Disabled Lives Matter
S02-Ep03_Dr_Heron_Werner

S02-Ep03_Dr_Heron_Werner

February 3, 2022

Season 02, Episode 03
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Dr. Heron Werner

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast.  Let's welcome co-hosts Nadine Vogel and Norma Stanley! 

Nadine Vogel: Hello everyone, this is nadine vogel and I want to welcome you as co-host of disabled lives matter we are more than just a podcast we are a movement, and today I am joined by the fabulous norma stanley.

NORMA STANLEY: Hello everyone.

Nadine Vogel: My co host in crime partner in crime.

[laughter.]

Nadine Vogel: And we are just delighted today to bring you Dr Werner Dr Werner is a specialist in fetal medicine ultrasound obstet obstetrics and gynecology not that easy to say.

Nadine Vogel: Dr Werner welcome.

Heron Werner: Thank you i'm very happy to be with you.

Nadine Vogel: Thank you so tell our audience where you're practicing today primarily.

Heron Werner: Yes, I live in Rio de Janeiro Brazil so i'm physician here work more with the fetal imaging ultrasound and also Magnetic Resonance Imaging. In special case.

Heron Werner: I I had been here in Rio for. 30 years. 

NORMA STANLEY: oh wow.

Nadine Vogel: So thank you, I you know it's interesting because when when we heard about you and your work and your background we were just so excited to speak with you. um.

Nadine Vogel: And I think our audience is going to be really surprised I didn't even know these things existed, but you came up with an idea an invention to make 3D models. Of fetuses.

Nadine Vogel:  but so if that's not amazing enough right i've heard a 3D lots of things, but not of fetuses, but you decided to do specifically for your patients who are blind so, can you tell me first, tell our audience just how did that idea even come to you.

 

 

Heron Werner: Yeah. um. I love very much human fetal imaging and I remember.

Heron Werner: When I was in my first practice I lived in France for three years and I remember there we received one time a patient a blind patient.

Heron Werner: And in that time we didn't have a 3D ultrasound 3D images for diagnosis, so we, I saw something very interesting because we did the profile of the fetus in the ultrasound.

Heron Werner: And with a scissor we cut the profile to the patient to feel the profile of the fetus, so I saw that it's very interesting.

Heron Werner: So the years past in the 90s, we start to have the 3D ultrasound there in the beginning, if 3D ultrasound was not very powerful it was difficult to prepare the images, the quality of the images were not.

Heron Werner: Very good, it was not very good.

Heron Werner: But in at the end of 90s, the ultrasound start to be the 3D ultrasound we start to be powerful and then we can improve a lot, the quality of the images so my experience it will increase it with the 3D ultrasound and.

Heron Werner: In the beginning of the year 2000.

Heron Werner: I received the clinical proposal.

Heron Werner: From the people from the National Museum in Rio de Janeiro.

Heron Werner: To to work with them with the fossils.

Heron Werner: Within computed tomography.

Heron Werner: What they would like.

Heron Werner: to do is to prepare the the rocks they have the rocks.

Heron Werner: With the fossils inside with do the CT scan and then by.

Heron Werner: Using 3D printers you can print, what do you see inside.

Heron Werner: The rocks.

Heron Werner: It was a very, very.

Heron Werner: Good experience, so we start to work together and we have the four we we did a group of four institutions here in Rio de Janeiro, which is Gávea university, Catholic University of Rio de Janeiro, the National Institute of Technology and also the National Museum of Rio.

Nadine Vogel:  Wow.

Heron Werner: So, and this was the first project, so our first this experience in 3D I have my experience in 3D ultrasound.

Nadine Vogel:  Right.

Heron Werner: But the experience of 3D printing what we start in this time at this time we so we use the non invasive technology in paleontology.

Heron Werner: Where we're different blocks of material containing fossilized the vertebrates from the museum, we can extract the rocks in do the 3D printing of the fossils so they they weren't very excited with these in they asked why not.

Heron Werner: They asked us in the clinic, why not we continue this with the Egyptian collection, because we have Egyptian collection in the museum, so we did the also the the.

Heron Werner: Egyptian collection use the mummified the human bodies in also animals, so, if I can see the.

Heron Werner: The bones of the vertebrates inside the rocks if I can see the mummies inside the coffin, why not again not I can produce the 3D the print of the fetus inside the the womb so then we start to do the we start our third project was with to call the Fetus 3D project and.

Heron Werner: The problem in that time was around.

Heron Werner: 2005 the quality of ultrasound to do all of this kind of 3D printing was very, very bad So the first experiences we started to study with the fetus with bones more malformations that we used to do a CT scan at the end of the pregnancy with low dose dose of.

Heron Werner: Radiation very low dose.

Heron Werner: to study the complex mal malformation bones more malformations and that with this we could do the 3D printing of the bones and help the specialists to identify the pathologies.

Nadine Vogel:  Wow, that's amazing.

Heron Werner: So ah. Yeah.

Heron Werner: Then we we started to talk with the the company's of ultrasound and M-R-I, because when you feed babies is ultrasound.

Heron Werner: To diagnose to start to prepare the protocols for use these in 3D printing so we got it in ultrasound and MRI Magnetic Resonance Imaging.

Heron Werner: In the initial idea was of reconstruction, the 3D printing of the fetus from ultrasound or MRI to assist medical students in the study of complex malformations in university.

Heron Werner: And also these models could also facilitate a multidisciplinary magical discussion, for example, involved with Neonatologist, geneticists, pediatric.

Heron Werner: resurgence in also radiologists did all of them discuss in those kind in this kind of images the diagnosis incoming complex pathologies, including pre and postnatal surgical planning.

Heron Werner: For the fetus or post natal in the babies.

Nadine Vogel:  Wow, that's amazing.

Heron Werner: So the quality, year after year is start to be better and better and then you think I remember the case, we did in France when I cut the fetus of the profile of the fetus and we say.

Heron Werner: Why, we cannot use also for prenatal care in in blind patients, yes, so I close to my house here in Rio, I have the Institute for blind people.

Heron Werner: it's a big institute here in Rio went there with my friends and I say so, we like to to start and then another experience in see how the patients feel the pregnant patients blind patients feel during the ultrasound if they can touch the fetus.

Nadine Vogel. Yeah,

Heron Werner: So.

Heron Werner: Then they.

Heron Werner: They say it's a good idea I wait to four weeks, months and more than one year, but one day a patient call.

Heron Werner: from there.

Heron Werner: and say i'm pregnant.

Heron Werner: They talk about to you, I like to have this experience and then we did the ultrasound and it work and that time was difficult to work with the images, because it takes the the the quality of the software to prepare the human.

Nadine Vogel: was not.

Heron Werner: Good so usually we take more than 10 hours to prepare the. images.

Nadine Vogel: Oh my God.

Heron Werner: But we did that in the day, the first experience was wonderful very, very.

Nadine Vogel: So what I find so interesting and normal you know as I'm listening to this right, then.

NORMA STANLEY: Yeah.

Nadine Vogel: So we have a doctor who specializes in fetal medicine that starts out by looking at and doing this in rocks.

NORMA STANLEY: Right.

Nadine Vogel: We have a doctor working with a museum and i'm thinking okay that that's a little odd right we go from rocks to but the journey, I guess, I would say that you have taken.

Nadine Vogel: You know, talk about out of the box talk about not necessarily connecting those dots but then when you talk about that last stage before you went to do this for for women who are blind.

Nadine Vogel: But about diagnosing and preparing you know my daughter was born significantly contracted all over her body, and you know, had we had that kind of imaging before.

Nadine Vogel: yeah we had those 3D models and I think that a number of things could have been.

Nadine Vogel: We could have prepared better.

NORMA STANLEY: yeah.

Nadine Vogel: And and procedures and so forth, so you know i'm taking this from a very personal note, as well, but but to hear you know.

Nadine Vogel: i'm just smiling because I can just imagine there's someone who can't see their baby right and can't look at that screen to be able to feel that and get a sense I I just that has to be just mind blowing.

Heron Werner: But it's incredible when I saw the first time they become up from the 3D printer I say it's unbelieveable when I showed them.

Heron Werner: In the Congress and the people saw in the first time that's incredible.

Nadine Vogel: Wow.  

Heron Werner: It was. very funny to see the the face of the doctors.

Heron Werner: watching that.

Nadine Vogel: Right. right. and to just because if you think about it, how else would a woman who is blind.

Nadine Vogel: Have any idea of how that baby is forming or you know even just through description, obviously, but, but I just love this, so this is fascinating, but we need to take a very short break and then, when we come back Dr Werner, Norma and I have all kinds of questions for you.

Heron Werner: All right

Nadine Vogel: So any to our listeners don't go anywhere, we will be back in just a minute with Dr. Werner  moving from.

Nadine Vogel: rocks to babies.

Nadine Vogel: All right, we'll be right.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: Well Hello everybody, this is nadine vogel joined by my co host norma stanley of the podcast disabled lives matter.

NORMA STANLEY: Well hello.

Nadine Vogel: And today we're talking to a doctor Werner this incredible emotional story, but it's not just a story it's it's real life and it's Dr Werner it's you creating these 3D models of.

Nadine Vogel: women's fetuses and when they're blind that's, the only way they can get a sense of right and and see but I, you know, I have to tell you.

Nadine Vogel: You know, for our listeners on break Dr Werner was showing us a sample of a baby's face a 3D image and you know, I was thinking, even though Norma you and I can look at the ultrasound right and.

NORMA STANLEY:  Right.

Nadine Vogel: right but i'm sitting here thinking Oh, but that's so much more powerful.

Nadine Vogel: Then seeing on a flat screen right.

NORMA STANLEY: Yes.

Nadine Vogel: Wow. So let me ask you this, Dr. Werner how many how many patients, how many patients, you know, pregnant women who are blind have benefited so far.

Heron Werner: So a to now 23 blind pregnant women.

Heron Werner: 18 of them, their husband was also blind they meet each other in the school they told me, and most of many of them to work together and.

Heron Werner: So we have one in one case the woman was Okay, but the father was blind and the other case the husband was blind.

Heron Werner: One case.

Heron Werner: In the other case just a woman blind.

Nadine Vogel: And in what is the cost and you said 23 women that that's the only just since 2017 I think right so it's only really in a fairly short period of time that you're doing this, but are there is there a financial cost to these to these couples.

Heron Werner: No, no, there is no financial cost.

Nadine Vogel:  Really.

Heron Werner: Because we have a program here, we pay for, for we we have a lab in which we talked that this must be free for them, so if the the the couple if they are in Rio de Janeiro area, we were you, we are based.

Heron Werner: There is no cost.

Heron Werner: Even the ultrasound so the ultrasound examinations free and also the 3D printed model is free.

Heron Werner: But if they live far from Rio.

Heron Werner: In another state or if they are outside of the country, so I asked them to send me the file from the ultrasound. 

Nadine Vogel: Okay.

Heron Werner: Sometimes the doctors they're called me to to.

Heron Werner: To explain them how should they manage the block the 3D file sent to me, and you sent to the patient without cost any cost so it's a program it's it's free yeah.

Nadine Vogel: Now is this free outside of your country like you know, is it first of all, I guess, I should ask the question are there other institutions doing this in other countries around the world, one and then two if they are, are they also providing it for free.

Heron Werner: i'm not sure.

Heron Werner: I don't think so yeah we you here is free, but I think around the world they they they pay I think.

Nadine Vogel: yeah I would I would imagine if you did this in the states.

Nadine Vogel: We definitely pay.

Heron Werner:  Yeah, yeah.

Nadine Vogel: i'm sure we pay a lot for it, and so, how many of these images in 3D images does a couple receive throughout that nine month period.

Heron Werner: We will do the ultrasound so the ultrasound we describe they all the images with talk too much with the patient talk a lot describing how is the fetus the position, and then we choose the best image and then we print. the best.

Nadine Vogel: And how many times do you like how many images will they end up having over the course of the pregnancy.

Heron Werner: How many exams so usually here we have three exams during pregnancy, first, second and third.

Heron Werner: trimester in the first trimester is around 12 week of gestation, the second trimester between 20 to 22 weeks, and the third trimester between 28 to 32 weeks of gestation.

Nadine Vogel: now let me ask you this, because obviously this program is funded for women who are blind or husbands, who are blind.

Nadine Vogel: But what happens if you're conducting an ultrasound and you can see, there is something wrong with the fetus right there's there's some clinical issues um would you then also do still use the 3D images for that.

Heron Werner: Yeah. This is this same one one important point in 3D images in 3D printed images in specially for blind patients, if you find them in some kind of malformation especially out external malformation like. cleft lip for example.

Nadine Vogel: Yeah.

Heron Werner: We can explain better the couple.

Heron Werner: What what is the malformation.

Heron Werner: You know, because the people who can see you can explain the TV in the monitor the machine, but for the blind, when they have to visualize.

Nadine Vogel: Yeah.

Heron Werner: They have what's the problem, even when they touch the problem in we have we had one case with problem.

Heron Werner: All of out of these.

Heron Werner: 20-23 patients and we have one case we.

Nadine Vogel: face malform malformation.

Heron Werner: We can describe we can discuss and explain better when you have the 3D model.

Nadine Vogel: When I would think to if there is an anomaly, that is, that great even from someone who can see it on screen.

Heron Werner: Yeah.

Nadine Vogel: Sometimes it's it's it's still very difficult to imagine what that really looks like or what that means and i'm just thinking from a very personal perspective, so I I appreciate this is very much on how long after the exam does the do the couple get the copy of the of the image.

Heron Werner: If they are based in Rio what we do, we do the ultrasound in special case we do MRI but.

Heron Werner: We do the ultrasound we explain everything some some most of the time it takes around five to seven hours to prepare the model.

Heron Werner: So I asked the patients go back home and I asked them to come back the next day or 48 hours, depends of the schedule and then we would do the ultrasound again explaining and then they can touch the image.

Nadine Vogel: i'm just saying in awe. norma do you have some questions I'm.

NORMA STANLEY: I was wondering, is it is this a service that.

NORMA STANLEY: can be offered to typical parents too, or is it specifically for you knoq, because I think that they would be. interested.

Heron Werner: Yeah we use a for free here just for blind patients, but we use a lot these for.

Heron Werner: For for the specialists to discuss complex malformations I think it's easier when you have a 3D model.

Heron Werner: very clear image and discuss the pathology.

NORMA STANLEY: Right.

Heron Werner: With this those kind of file.

Heron Werner: Because years ago we used we used to have neonatologist surgeons are all of them inside the room in discussing in 2d images, the problem is sometimes they were geologists know very well the images, but the surgeon they don't so discussion it's improved with.

Heron Werner: A lot when you have a very clear image 3D image.

NORMA STANLEY: Up to what age they do the imaging how old the fetuses when they're doing is it is it all the way.

Heron Werner: I like first trimester 12 weeks because you can see the whole fetus body in ultrasound and I like.

Heron Werner: The second, the end of second trimester around 22 weeks or 24 weeks when you can see the fetal face by ultrasound, but if you want to see the whole fetus.

Heron Werner: In the his body very well developed at the end of the pregnancy, then you have to do to do the MRI, because MRI has a very big field of view.

Heron Werner: And then you can catch the whole fetus, for example, our nine month fetus inside one image and, then you can bring the fetus in the the real size.

Heron Werner: In ultrasound you cannot do it so in ultrasound I like first trimester and.

Heron Werner: Beginning of third trimester to see the face.

NORMA STANLEY: Yeah.

Heron Werner: In MRI I like.

Heron Werner: The third trimester after 30 weeks.

Nadine Vogel: So I mean what's racing through my mind norma is just you know how many other applications.

NORMA STANLEY: absolutely.

Nadine Vogel: Right, there are for this so Dr. Werner you know i'm sure you've already thought about that we already moved from rocks to people.

Nadine Vogel: What what other applications are you, you know thinking, this could be used for.

Heron Werner: We use a lot here we just published a paper.

Heron Werner: In in conjoined twins.

Heron Werner: To planify the surgery, because when you see, we have our case now the the twins link it with the brain.

Heron Werner: And the discussion, how you sit there, how you separate them is starting prenatal so we start to prepare the 3D models and the surgeons start to talk with the patient.

Heron Werner: How they will procedure after the labor you know and and the patients in the beginning, are very anxious about that.

NORMA STANLEY: Right.

Heron Werner: And when you have the surgeons discussing this. What do you do in postnatal the anxiety of the patients is is getting down, you know.

Heron Werner: So used to prepare the patients and to explain them what What do you do after.

Heron Werner: The labor.

Nadine Vogel: Wow. norma i'm like speechless.

NORMA STANLEY:  I know.

Nadine Vogel: My brain is racing right.

NORMA STANLEY: I know I mean I would think, for you know families like ours, who you know who are expecting this might be something that can bring.

NORMA STANLEY: Like you said you'd know what to expect and how to handle it when the baby comes up in the morning and then finding out what you need you know just start planning for the future, so. yeah.

Nadine Vogel: But you're right Dr. Werner. you know I can think when when my daughter was born and she spent three months, in NIC-U and I remember the team.

Nadine Vogel: All the specialist would gather together in the conference room and there was be all these pow-wows, and you know, everybody in that case was sighted, but that doesn't mean that clinically they were sighted right.

Nadine Vogel: In terms of really understanding each of these issues with just made us feel even you know even further away.

Heron Werner: In another point interesting that's when you see all of these 3D images, which is not only 3D printed images but to also have the virtual body.

Nadine Vogel: Yes.

Heron Werner: That can use for the others purpose, for example, I can put the 3D glasses V-R glasses, and I can navigate inside the the womb.

Heron Werner: I can go inside the fetus and I can see, for example, fetus with a tumor in the neck, I can see the relation between the tumor and the airway path.

Nadine Vogel: Wow.

Heron Werner: So many possibilities, you can have with the 3D models so you can print the models so they can see the models virtually.

Nadine Vogel:  Yes. 

Heron Werner: Now what the sides cursed with the surgeons, for example, we are based in in the lab in the university the surgeons based in the hospital they send me we prepare the file in nowadays they can virtually.

Nadine Vogel: Right.

Heron Werner: You know we're.

Heron Werner: We can discuss virtually the 3D models that.

Nadine Vogel: What a long way, this has come.

Heron Werner: Like metaverse was like you know we be together with their avatars discussing the 3D virtual model.

Heron Werner: In a think soon we can touch also the virtual model, because if you have we have nowadays, we have the technology.

Heron Werner: And we did this experience we published this experience, we can have the virtual model, and it can put a glove, with sensors in the glove and you can go virtually in have the feeling of the virtual.

NORMA STANLEY: Wow.

Nadine Vogel:  Ah.

Heron Werner: So it's many we have many possibilities, you know, of course, the future more possibilities to facilitate this. virtual.

Heron Werner: discussion between the specialists and also with the patients.

Nadine Vogel: Well, you know I had to I have to say, as you know, hosting a podcast The last thing I should be is speechless.

[laughter.]

Nadine Vogel: But I'm kind-of speechless, aren't you norma.

NORMA STANLEY: I love it it's just so amazing what technology can do.

NORMA STANLEY: These day, but it's a game changer.

Nadine Vogel: And for good right because you know.

NORMA STANLEY: Absolutely.

Nadine Vogel: You hear, often in the news, you know, yes, we have capabilities from a technological standpoint but are they all being used for good, this is not just being used for good, this is being used for good better best I don't know this is this is truly. game changing.

NORMA STANLEY: Absolutely.

Nadine Vogel: I just I can't believe that we're out of time, I feel like I could spend another half, I just want to listen to more stories.

NORMA STANLEY: Yeah, that was pretty awesome.

Nadine Vogel: So, Dr Werner. Thank you so much for joining us today, I hope we can come back to you and hear a little bit more. About the developments.

Nadine Vogel: Please let us know, you know as there are major.

Nadine Vogel: Developments coming out, let us know bring you right back in and.

Nadine Vogel: and talk to our audience, but this was fascinating so I just want to thank you very, very much.

Heron Werner: It was a very good pleasure to me to be with you.

Nadine Vogel: Oh well thank you.

Heron Werner: I hope to be with you together another day.

Nadine Vogel: Absolutely. Maybe in person. Who knows.

Heron Werner: I know right.

Nadine Vogel: And to our listeners, i'm sure it is fascinating for you as it as it was for us, and this is nadine vogel and norma stanley.

NORMA STANLEY: Norma Stanley.

Nadine Vogel: Co host of disabled lives matter we are more than a podcast we are a movement, and we look forward to having you join us next time on the podcast, see you soon everybody bye bye.

NORMA STANLEY: Be blessed.

Heron Werner: Bye bye. Thank you.

Nadine Vogel: Thank you.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S02-Ep02_Steven_Bier

S02-Ep02_Steven_Bier

January 27, 2022

Season 02, Episode 02
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Steven Bier

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast.  Let's welcome co-hosts Nadine Vogel and Norma Stanley!  

Nadine Vogel: Hello everyone, this is nadine vogel and I want to welcome you to another fabulous episode of disabled lives matter norma norma stanley my incredible co host how the heck are you today.

NORMA STANLEY: i'm great it's great to see you guys everybody and looking forward to 2022.

Nadine Vogel: I know I can't believe we're already like into 2022 and you know it is time flies I know, everybody says that but.

Nadine Vogel: You know I actually I just say I saw a piece of art recently and it had all these clocks on it and butterflies, and the guy said his team was the time flies and said, well then, there you go.

[laughter]

Nadine Vogel: So today we are interviewing really a wonderful gentleman Steven Bier Steven started a nonprofit and a business as a result of having a son, who has autism.

Nadine Vogel: And i'm going to just really introducing all of this i'm gonna let him do it because I just it's so wonderful I love what you've done Steven  so welcome to the show um.

Nadine Vogel: You know i've heard P popcorn for the people of her popcorn with purpose tell us a little bit about what that really is so.

Steven Bier: Popcorn for the people, if you want to go into your imagination, for a second and go back in time to the summer of 2014.

Steven Bier: I have a son was high functioning on the autism spectrum and he could not get a fulfilling or meaningful job and here he is pushing he's pushing shopping carts at ShopRite.

Steven Bier: which you know, would be a great fit for some personalities others know him he wasn't no but he was doing it and then one day he forgot to put suntan lotion on the middle of July, he came home red as a lobster.

Steven Bier: My wife will talk about in a minute my wife said, this is ridiculous Steven you're pretty useless to me most of the time, but the one thing you can do is business can get a business going for Sam and the other young men and women in the neighborhood.

Steven Bier: And you know life's funny I saw I don't know right, I went to a to a business directory and online I opened it up and the very first thing on top was a popcorn stand for sale.

Steven Bier: That's interesting popcorn it's not seasonal it's year round it cuts to all social economic barriers everybody's it's not a fad.

Steven Bier: and it's not dangerous to make.and.

Steven Bier: My son's name is sandy said, Sam How would you like to be in the popcorn business and now was it, seven years later eight years later.

Steven Bier: That little stand has grown into a 4000 square foot processing Center.

Steven Bier: and ask me how many kids we have working for us.

Nadine Vogel: How many kids you have working for you.

Steven Bier: Oh it's so funny you should ask that.

Steven Bier: And I use the word kids lightly, because.

Nadine Vogel: I was just going to say young adults.

Steven Bier: Yes, so. um.

Steven Bier: They are We broke the 50 mark we're in the 50s now.

Nadine Vogel: Congratulations, what what is the age range of these folks.

Steven Bier: Oh, the age range is we have people coming from high school, they have more on job training, although they can work also you know after.

Steven Bier: School going up to, I think one man Rich is in his in his 50s.

Nadine Vogel: Okay okay and does everyone that works to do all 50 have autism or on the autism spectrum, or do they have they have differnt disabilities.

Steven Bier: Absolutely not.

Steven Bier: We do not want to close shop, very specifically, we are literally if you go to the dictionary, and you look up the word neuro diverse right because definition, it will say popcorn for the people.

Steven Bier: We are neuro diverse we have we have such a spectrum, we have young men and women, on the autism spectrum, we have some workers with cerebral palsy, we have two workers who are blind, which just amazes me when they're out there cooking popcorn.

Steven Bier: And we have so yes it's a big spectrum and at this point there's no like official statistics, but we're one of the biggest employers of autistic workers in the country pretty sure.

Nadine Vogel: Wow, that's that's fabulous and and you know we know, I mean norm and I are both you know moms who have daughters with disabilities adult daughters.

Nadine Vogel: So we know the unemployment rate of people with disabilities is high exceptionally high, but i've been told that for those with autism it's even higher Is that true.

Steven Bier: Yes, that the the best educated guess is 80-90% I think when you start hearing them was like that young to be exactly you get the picture is. really big trouble 

Nadine Vogel: Right So in addition to 50 people with disabilities that work there i'm assuming you have others that provide guidance that do various things to help them So how are you. structuring. 

Steven Bier: Okay so just to sit back for a second, this is a nonprofit.

 

Nadine Vogel: Okay

Steven Bier:  But but but but.

Nadine Vogel: But with capital B.

[laughter]

Steven Bier: We run it like a business with all the good and all the bad you know I could tell you some wonderful success stories and terrible situations where we were unable to employ people.

Steven Bier: One person he became violent and we didn't have a capability for that it is a business, it is looks like a almost like a factory with. pots.

Steven Bier: Everyone's gowned up for it forget the virus even everyone's gowned up to make the food, everything has to be you know sterile.

Nadine Vogel: Right.

Steven Bier:  So it is a real business with a huge workforce, we have all the way from one end we do allow some schools to come in and do some some simple work.

Steven Bier: You know, go to the high school range, but then after that.

Steven Bier: it's everyone and there's no there's no figuring where someone's going to fit in and until we meet them.

Nadine Vogel: But in terms of running the business aspects do you have besides yourself right helping other other volunteers are there other parents of these individuals other professionals How does that.

Nadine Vogel: structure work.

Steven Bier: I going to turn your question a little bit and put it this way, what would I advise other parents who wants to do something we get this all the time.

Nadine Vogel: Okay.

Steven Bier: it's interesting people reach out to us, and then, when we reach out back vastly over 9% of time it won't go anywhere and nothing will happen, I think, parents are really.

Steven Bier: Working themselves there you know, probably, if not overwhelmed or under a lot of pressure with having a work on the autism spectrum or any disability.

Steven Bier: Right and now here, at the same time you're doing it you're teaching your your son or daughter and you're getting treatments and you're getting therapies.

Steven Bier: And I now you've come to the last step the employment and it's not there and to step into that void and do it and try to create something yourself can seem daunting.

Nadine Vogel: Oh yes

Steven Bier: Right. It can seem daunting, so I would tell everyone one myself, you know people started it have little to no business, I mean just simple business stuff none of us have MBAs or anything like that.

Steven Bier: Volunteers can be helpful, but with volunteers, you have to really find that diamond in the rough.

Steven Bier: Because most volunteers, they mean well it's in the heart but they'll come for a little period of time there and a little period of time here to find you know we've been lucky to find a few incredible people with Mark Katz he's the CEO the CFO and the CEO also Vera Wang.

Steven Bier: We have a present from Vera Wang and he is ours every day.

Steven Bier: But he's an unusual situation most don't So I say to parents that other parents who were willing to work and you guys get together and think about you going to do is terrific volunteers, are good, but the end of the day, you have to do the heavy lifting yourself.

Nadine Vogel: Absolutely absolutely and and it's my understanding that you've had support from the mayor, I mean just from other companies, I think you what I heard now is you're even selling things beyond popcorn like you're making sandwiches did I hear correctly that boards head has now has taken an. Interest in you guys.

Steven Bier: No, no that's the it's actually the other way and, again, I would say this, the parents looking through things we started out and we went through a couple I wouldn't say failures, but things that just didn't work out well, but we learn, so we started out in a mall so popcorn stay in the mall.

Steven Bier: And the.

Steven Bier: best thing happened, it was my son and two other workers and the first thing we learned was that.

Steven Bier: hey here we have we have these students on the autism spectrum personalities mattered where they would succeed or fail so one young man oh my God he spent a tale he could tell a story he was just great and sales.

Steven Bier: And then we had other people who had poor hand eye coordination and we're unable to do jobs, like sweeping cleaning, so we put them in a different part.

Nadine Vogel: Right.

Steven Bier: And then from there, we began the best thing happened to us the mall threw us out.

Steven Bier: Threw us right out on our butts some international popcorn company came in, gave them like a quarter million dollars to set up a stand and we were out.

Steven Bier: And so we went to another mall we came up with this idea of sandwiches and I know a lot of the parents were trying to form things for you know their children.

Steven Bier: tend to drift towards food, and I would say food is really very difficult, you might want to rethink it there's a lot of moving parts, something which has a lot of moving parts.

Nadine Vogel: Yeah, yeah.

Steven Bier: Refrigeration freshness and so forth, so from that, we just kept it simple, so my take home message here is we actually did the exact opposite, of what you were saying.

Nadine Vogel: Oh okay.

Steven Bier: We sell one. thing. which is popcorn.

Steven Bier: And we sell.

Steven Bier: merchandise now.

Nadine Vogel: Okay okay that's.

Steven Bier:  Nothing sexy.

[Lot of Laughter]

NORMA STANLEY: Nice. though.

Nadine Vogel: I really I love that I absolutely love it norma do you like popcorn.

NORMA STANLEY: I love popcorn do you do flavor popcorn.

Steven Bier: It is all gourmet oh norma, this is not fair to you I'm gonna describe it, this is not fair.

Steven Bier: We make things like these cookies and cream, we had this wonderful.

Steven Bier: This one woman Agnes, who was a medical researcher and a culinary major so she kinda understood, chemicals and heat and cold and everything with the other.

Steven Bier: And she made she developed cookies and cream popcorn.

Nadine Vogel: The kids make the popcorn.

Steven Bier: Then they melt white chocolate and pour it over the popcorn and they smash up oreos with a hammer.

NORMA STANLEY: Oh wow.

Steven Bier: Let it dry out cookies and cream popcorn.

NORMA STANLEY: That sounds good.

Nadine Vogel: i'm gaining weight just listening to you.

NORMA STANLEY: I know right.

Steven Bier: There are no calories but it's all for charity.

Nadine Vogel: Oh Okay, well then, there you go I like that.

Steven Bier: We got a message from God.

Steven Bier: The message was, charity, no, no calories.

NORMA STANLEY: Sounds good to me.

Nadine Vogel: I love it.

Nadine Vogel: Well let me ask you this um well there's a couple of things actually let's start with give me a couple of success stories, you know i'm sure that there are many, many can you pick maybe maybe one before we go on brea, and then when we.

Nadine Vogel: Come back.

Steven Bier: There are a lot of favorites but one Patrick Patrick came.

Steven Bier: it's been a couple years already, but when he first came the first few days I said, this is not gonna work out he would work for like 20-30 minutes and then he had to leave to go out and do self stimming self stimulation.

Steven Bier: I'm sure you guys are familiar with that something that difficult in the workplace.

Steven Bier: And he wouldn't break, like every 20-30 minutes to do self.

Steven Bier: stemming is if the two three days I said I don't think this is gonna work fortunate, I was overruled, they said let's hang in there, with him, he is now he went from there, falling, to being able to do things like bagging and labeling now he's cooking popcorn.

Nadine Vogel:  Oh my gosh.

Steven Bier: I believe he's on, we have a segment that NBC today did a national television.  So if you Google popcorn for the people NBC today, you can go to our website and look under the media section it's there.

Steven Bier: And I believe Patrick is in there being interviewed on national.television.

Nadine Vogel: So what so i'm assuming that he still has to take breaks to self stim.

Steven Bier: that's a great question it's under control now and it can even be scheduled.

Nadine Vogel:  Wow.

Steven Bier: And so, everything is way down way.

Nadine Vogel: And do you think how do you feel like the employment kind of weighed into that you know because it sounds like the two probably came together.

Nadine Vogel: In a very positive way.

Steven Bier: You know I think at the end of the day, what are we doing at popcorn for the people we're taking people who are sitting at home unemployed.

Steven Bier: You know, living off the dole, you know it's not now you taking that and coming to an environment with all workers you know some on the spectrum you know some typical things going on is activity you're part of it you're creating, you can see what you've created it's pretty you know obvious.

Steven Bier: When you finish.

Steven Bier: The bag of popcorn, so I think it gives purpose and. um.

Steven Bier: I think that's really why.

Nadine Vogel: Okay, that sounds really good to me um you have one more really cool success story.

Steven Bier: I guess MIA MIA.

Steven Bier: MIA really had difficulty and the most she was able to do at the beginning, what we do is we look for ways to create employment within the system, so when the bags come right let's say the bag and have a pot, where you have your flavor.

Nadine Vogel: mm hmm.

Steven Bier: That's blank there's no flavor and we'll have stickers stickers for chocolate stickers for Carmel and we will have workers such as MIA who that's the highest level, she could do.

Steven Bier: In the office putting on stickers obviously we could print it beforehand pre printed with the word chocolate on there and it costs us maybe a half penny or penny a sticker but it creates a whole lot of work.

Nadine Vogel: Right.

Steven Bier: That's what MIA did unbelievably she went from just putting on stickers to she is now cooking popcorn. when I first came in you kind of knocked me over with a feather.

Steven Bier: which she first started working for us in the mall you turn around and she'd be gone and she'd be heading out in her mind decides she's gonna go get soda and we'd have to go through the mall finding which store she went to the.

Steven Bier: hideout so and now she's in the back okay popcorn.

Nadine Vogel: that's that's really cool.

Nadine Vogel: So what i'd like to do because we were at a time, we have to go on a break, but when we come back from break Steven what I would like to understand is.

Nadine Vogel: What is your process right so let's talk about when we come back you know how do people find out about you, how do you source.

Nadine Vogel: um and you know just what is that process from getting them i'm interested in this job to their employed so let's take a short break when we come back, we will start with that and for our listeners stay tuned do not go anywhere, we will be right back.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone and welcome back to disable lives matter more than a podcast, it is a movement and Norma my co host and I are moving along today with Steven Bier and Steven is.

Nadine Vogel: the founder the the disability poppa.

[laugher.]

Nadine Vogel: of popcorn for the people, Steven  welcome back.

 

Steven Bier:  Thank you.

Nadine Vogel: um you know you shared a couple of success stories before break what what Norma and I would really like to understand is.

Nadine Vogel: You know how does someone come to you in terms of i'm interested in a job So how do you source number one and then wto what is that hiring and recruiting hiring process onboarding process. um

Nadine Vogel: So we can better understand what that looks like and you never know who else is out there that might be interested.

Steven Bier: Sure, so the way that most people come to us.

Steven Bier: Is we have them come through the website and on the website there's a simple form to fill out if you're looking for employment, just as a standard type questions diagnosis true you know medications you know education history so forth.

Steven Bier: And then from those as the need arises and for those that are a good fit we pick from those applications, so if people are interested just go to popcornforthepeople.com.

Steven Bier: popcornforthepeople.com and you find the employment page and you fill it out, and you know we asked you to be patient, because these things tend to come.

Steven Bier: You know you have no openings for a couple of weeks, and all of a sudden you need three.

Steven Bier: So that that's the main way that we have people contact us.

Nadine Vogel: Okay, and then, once they once you they come in what is the interview process onboarding process, what does that look like.

Steven Bier: So they they'll they'll come in and we'll talk to them and just sort of go over you know their life and what was on the application.

Steven Bier: And then, if it looks like a good fit we'll have someone work a couple of times, maybe three four times i'm not putting them on payroll yet tell them look we're just going to see if this works for you.

Steven Bier: And it starts out sort of as an audition.

Steven Bier: And then it moves into a training and if if the three four times sometimes we'll know after one.

Steven Bier: If it looks like a good fit, then we put them on payroll and we try to be as flexible as we can to make it workout in terms of hours, and so forth.

Nadine Vogel: And what, what is your retention look like.

Steven Bier: what's that. retention.

Nadine Vogel: Your retention.

Nadine Vogel: In terms of you, if you bring.

Nadine Vogel: 50 on do all 50 stay.

Steven Bier: it's very high I don't know the.

Steven Bier: exact number but something specific has to happen for people to leave usually.

Nadine Vogel: Right and so have there been any difficult moments you know any issues where you just didn't hurt your heart.

Steven Bier: So, again popcorn for the people it's a nonprofit you know looking to create employment for the autism community, but to succeed we try to run it as a business.

Steven Bier: And while we try to bend over backwards to make this a workplace that people feel comfortable is sometimes it just doesn't I can think in my mind one worker.

Steven Bier: very nice young man, but he couldn't help hitting the other workers occasionally and we you know there's only so far that we can support someone so you know that that that broke my heart.

Nadine Vogel: Any others like that.

Steven Bier: Usually it's similar type situations where there's an aspect of disability that we can't handle.

Steven Bier: With how Marco sat down in know floor and took some of his clothes off and.

Steven Bier: You know we try we try.

Steven Bier: As well as we can.

Nadine Vogel: No, no, I get it, and that makes sense, so you know what advice would you give to others, so you know there's there's a parent out there.

Nadine Vogel: Who has a young adult has a disability autism on a neuro diverse spectrum let's say and struggling with how to help you know around employment what what advice would you give them.

Steven Bier: yeah so it's a full time job getting young men and women jobs in a way there's an 80-90% unemployment rate it's really a full time job trying to get them a job.

Steven Bier: And one of the things to keep in mind is that many of the large corporations they'll you know they'll try to be kind hearted and bring on disabled workers.

Steven Bier: But in the crunch, you may end up on the second tier so we saw with Sam where they were having him work at a shop, I should say was working in a supermarket.  And he. um

Steven Bier: But then when thanksgiving we came he wasn't on the schedule, because they knew they can be super busy Sam wasn't as fast, so I think you have to really look turn over every rock I think the best bet is small businesses.

Steven Bier: And maybe even putting together two or three part time jobs.

Steven Bier: work well.

Steven Bier: As far as if we're going to set something up yourself, you know you started as a mom and pop don't try to set up a huge big thing by yourself, it is definitely doable if you're getting a lot of you like it do the food its food keep it very simple.

Steven Bier: like we did. popcorn.

Nadine Vogel: Right right and then make them make sense and And what about on the other side, so what advice would you give folks who want to hire people who are neuro diverse.

Steven Bier: Okay, so people and there's a lot of that that questions been floating around a lot and I get asked to talk to different groups and that seems to be, we want to do the right thing, but when exactly sure how to do the right thing.

Steven Bier: You know, and you know, one of the things they say look.

Steven Bier: get over it get over your nervousness okay it's another worker and the best way for you to look at it as you're hiring is.

Steven Bier: don't have all the medical aspects look of it as a quirk young man's coming in young women, they have a little quirk Okay, you see it you you, you talk and communicate you understand what it's about you try to work with them to to be able to fit within a system.

Steven Bier: Okay, so I would think one of the most important things is.

Steven Bier: To talk to parents caregivers you know teachers whoever's involved with bringing the person on board.

Steven Bier: And and don't be afraid, you know different is not bad.

Nadine Vogel: Right, I like that.

Steven Bier: A lot of the differences are really strong, so I guess one last thing I would remind businesses that.

Steven Bier: were looking to hire is you have a worker that if I was to make up.

Steven Bier: A stereotype so we have, I think, is pretty accurate, it would be a worker who doesn't it person coming in, on the autism spectrum usually.

Steven Bier: doesn't smoke doesn't drink doesn't stay out late partying will be there on time and this job, if not the most important it's at least one of the most important things in their life and that's what I would say to other businesses.

Nadine Vogel: that's and you know if you think about what businesses want out of their employees, it sounds like a model and play right it sounds perfect.

Nadine Vogel: So um.

Nadine Vogel: I do have one other question but norma do you have anything that you'd like to ask Steven before I go for my last biggie.

NORMA STANLEY: No, I just you know parents, like us, you know there's some people who really want their children to excel.

NORMA STANLEY: And despite their disabilities, what do you say to parents to encourage them to to to encourage the children to be the best that it can be sometimes parents.

NORMA STANLEY: put their children to the side and say well you know he can't parents, like us, you know, we know that our children can do something my daughter is a model, what would you say to other parents like.

NORMA STANLEY: You know, so the.

Steven Bier: I would say mom dad you did all this work to get this far you started off giving all this work to get them into the right school, you went through the.

Steven Bier: IEPs and the district and and then you have all this time, going to doctors and medications right.

Steven Bier: You know which one's going to work changing doses is all the stuff right, then you went through probably a whole bunch of problems, the teen years.

Steven Bier: and parents don't forget there is life after school ends Okay, and that is getting a job and just like you did with the schools and just like you do with finding the best doctors.

Steven Bier: You have to go out there and interact with the business community, and you know if you don't get thrown out on your butt at least you know once every couple of weeks and you're probably not being pushy enough.

Nadine Vogel: yeah I love that how true well so Steven  I know that our time is running out, but I do have one last question what is, what are the plans for the future where where is popcorn for the people going next, what are you doing. How you expanding.

Steven Bier:  We are too big for our processing center that we need another processing Center.

Steven Bier: And we are looking at the possibility of some way, maybe we can franchise of people open up in other areas i'd say the parents, you know if you're interested, we can start something small.

Steven Bier: This all depends on foot traffic places where there are events going on and that's all we really we really look for so we started out.

Steven Bier: In a mall and now we're at Rutgers football Rutgers basketball Rutgers football.

Steven Bier: Has 50,000 people were at Philadelphia eagles are at the javits Center Rockefeller Center so.

Steven Bier: Some mom or dad out there you have busy events in your neighborhood we can work out set up a tent sell some popcorn.

Steven Bier: So that's one thing we need more processing centers, we need a way to raise money we really haven't been great at getting charitable donations, we have some wonderful people who have given money we're so grateful, but our focus was someone making the popcorn really good.

Steven Bier: So I guess Those are some of our plan so if anyone out there has an idea, you know we're we're all ears.

Nadine Vogel: yeah I think you need to be at least in all 50 states right. don't you think norma.

NORMA STANLEY: Absolutely.

Nadine Vogel: yeah well hopefully this show help that right.

NORMA STANLEY: yeah yeah, I think that's a done deal.

Steven Bier: So you guys are great.

Nadine Vogel: I just you know, I think that you know the three of us right we're all we're all parents have adult children with disabilities and you know as you were describing Steven  you know.

Nadine Vogel: All those stages that you kind of go through, I norma and I both right, we can relate completely to the point I can, as you were saying you can I can visualize right, you know where where we were.

Nadine Vogel: But I think for a parent of a child.

Nadine Vogel: with disabilities, no matter the disability yeah there's a saying that you know, a parent's job is never done you're always you're always you're the parent your child will always be your child.

Nadine Vogel: But I think when it comes to disability and it's just exponential right in terms of what we need to do.

Nadine Vogel: Because it's not just you know and Steve i'm happy to hear you know what you think about this, but it's not just making sure that they are gainfully employed and happy and healthy and all of this, while we're alive, but it's really creating something so that when we're gone.

Nadine Vogel: This can continue right that they can live independently and be happy and healthy and productive.

Nadine Vogel: And that's a real difference between us and the parents, whose children don't have disabilities right there will always be the parent with a child be independent, on their own and and we want that, for our kids too but it takes a lot more work.

Nadine Vogel: In many ways to get there, and so I just on a on a personal note i'm so grateful Steven  for for all you and your family and everybody has done to make this a success, it is.

Nadine Vogel: And we just I know from from my heart and i'm sure from norma's norma, if you want to add, you know we just want to see you grow and grow and grow.

NORMA STANLEY: Absolutely, it's such a big need in our Community, so we definitely want to see you flourish, so thank you for all that you do.

Steven Bier:  My pleasure.

Nadine Vogel: Well, it was wonderful Thank you again for joining us and we definitely look forward to hearing more and seeing what you guys are doing and having more popcorn for more of the people.

Norma Stanley: Right.

Nadine Vogel: So for our listeners, we know that you've enjoyed this taping as much as we have and we look forward to seeing you on our next episode of disabled lives matter more than a podcast it's a movement norma.

NORMA STANLEY: Be blessed everybody looking forward to seeing you next time.

Nadine Vogel: Okay bye everybody.

Norma Stanley: Bye-bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S02-Ep01_Jane_Dunhamn

S02-Ep01_Jane_Dunhamn

January 20, 2022

Season 02, Episode 01
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Jane Dunhamn

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: To all our listeners, thank you for joining us and welcome to the Season 2 opening episode of the Disabled Lives Matter Podcast.  Let's welcome co-hosts Nadine Vogel and Norma Stanley!  Nadine Norma take it away.

Nadine Vogel: Hello everyone and welcome back to disabled lives matter yes we're a podcast, but we are more than a podcast we are a movement, and I am joined by Norma Stanley my partner in crime my co host hey norma.

NORMA STANLEY: Hi. i'm so glad to be back Happy New Year everybody.

Nadine Vogel: Yeah, Happy New Year, so we are just delighted to be back with everyone, and especially because of today's guest so Jane Dunhamn Jene is one amazing lady.

Nadine Vogel: You are all going to hear about this on her her work in disability spans 50 years she started when she was two just so everyone knows.

Nadine Vogel: and her work is primarily focused on the intersections of race and disability.

Nadine Vogel: Among, among other things, and and probably one of the most wonderful things that I know about her is that she is the founding Member and director of the National Black Disability Coalition and NBDC so Jane welcome.

Jane Dunhamn, NBDC: Thank you for having me.

Nadine Vogel: Absolutely I you know there's so many things I want to ask you about that i'm like oh my gosh where should we start where should we go so let's let's start with the fact that, like norma like myself, that you are a special needs mom do you want to tell us a little bit about that.

Jane Dunhamn, NBDC: Absolutely um.

Jane Dunhamn, NBDC: If it's okay with you.

Jane Dunhamn, NBDC: i'm going to change language when it's comfortable for me and i've never used the word special needs.

Jane Dunhamn, NBDC: You know, those, those of us who were in the trenches doing Disability Advocacy know that special isn't quite so special.

Nadine Vogel: I agree.

Jane Dunhamn, NBDC: So, they took that out, and I have been working advocating for years for school districts to change that language.

Jane Dunhamn, NBDC: The same way.

Jane Dunhamn, NBDC: Um, folks with intellectual disabilities.

Jane Dunhamn, NBDC: got to start using its. um.

Jane Dunhamn, NBDC: mental retardation I really think we should change that.

Jane Dunhamn, NBDC: So anyway.

Nadine Vogel: So Jane i'll just comment on that because.

Nadine Vogel: that's The biggest challenge is that this.

Nadine Vogel: is legally.

Nadine Vogel: Legally. 

Jane Dunhamn, NBDC:  Yes.

Nadine Vogel: Means that terminology for IEPs individualized education plans and so forth, and so it actually makes it very difficult not to use that language in many instances, especially when we're talking about younger children.

Jane Dunhamn, NBDC: And you know I, I find it to be very interesting that.

Jane Dunhamn, NBDC: It's such a struggle with school districts and yet we were able to get mental retardation taken out of the medical profession and and the.

Jane Dunhamn, NBDC: The diagnosis and so in this huge entity around our health is able to hear us and to change that language, but our schools, which is supposed to be our basis of education we can't get them so.

Jane Dunhamn, NBDC: where'd that scares me in terms of overall discrimination.

Jane Dunhamn, NBDC: If that's what the attitude is.

Jane Dunhamn, NBDC: What are our schools teaching our children across the board.

Nadine Vogel: Absolutely.

NORMA STANLEY: It's a scary thought for sure.

Nadine Vogel: yeah yeah.

Jane Dunhamn, NBDC:  So anyway, you did ask me how did I get involved um.

Jane Dunhamn, NBDC: Like the two of you, when my daughter was born.

Jane Dunhamn, NBDC: And was diagnosed I actively became involved.

Jane Dunhamn, NBDC: Um. I wasn't I didn't approach it with with fear from newness I was very, very thankful that I grew up in a church where.

Jane Dunhamn, NBDC: Our priest sister Julia Carter.

Jane Dunhamn, NBDC: Was paralyzed from the chest down she fell down when she was in college at Morgan state in Maryland, and so I was nine and 10 and we saw Julia with these last deal braces and crutches and she had a car that had hand controls and she was the accountant from for.

Jane Dunhamn, NBDC: Nadine help me what's what's the to be searched place where.

Jane Dunhamn, NBDC: Yes, she was the accountant for Kessler for years and years, that's where she retired from so as a kid I got to see this woman who had significant impairment, this still went to work every day to drove her car and then my priests nephew.

Jane Dunhamn, NBDC: had an intellectual disability.

Jane Dunhamn, NBDC: And and and how he was included so now we're going back 60 years, and these are the images that I saw and then of course the other person they attended the church with you all might know about was Deirdre Davis.

Jane Dunhamn, NBDC: And you know she wasn't actually passed, about a year or so ago, and she was from New Jersey.

Jane Dunhamn, NBDC: And Deirdre was a wheelchair user became an attorney worked in Washington and so and I knew the family, the family.

Jane Dunhamn, NBDC: Were family, friends, so I grew up as a young child seeing people with various impairments included in it in our lives and in our in our faith life, so that when you know my daughter was given the diagnosis, it was okay well let's just move forward.

Jane Dunhamn, NBDC: And so, coupled with what I began to learn about disability and what I had grown up, and you know as a child of the 60s or 50s and the 60s.

Jane Dunhamn, NBDC: Around race, I was able to begin to put those two together and that's where my advocacy really began first it began with disability in general.

Jane Dunhamn, NBDC: Right and then, as the years went on, and looking at the disparities when it came to race and it took me i've only been doing actively the race piece, for the last 20-25 years because my goal was to get my daughter, where she needed to be in life.

Jane Dunhamn, NBDC: And so that was my first priority.

Jane Dunhamn, NBDC: And after she you know was on her own.

Jane Dunhamn, NBDC: I began to really do the advocacy around race and disability.

NORMA STANLEY: It's so weird life is so you know you just never know Deirdra Davis is actually the sister of a friend of mine who lives here in Atlanta, and the aunt of another friend who was actually another good friend of my service amazing small world.

NORMA STANLEY: yeah yeah.

NORMA STANLEY: Yeah yeah is she was a power powerhouse in the White House and the things that she did.

Jane Dunhamn, NBDC: If you hadn't known her grandmother.

Jane Dunhamn, NBDC: Were D got her feistiness from.

Jane Dunhamn, NBDC: The entire family was quite amazing yeah.

NORMA STANLEY: yeah.

Nadine Vogel: Well let's let's do this and let's let's just fast forward, because I have so many questions, and I know our listeners to about NBDC.

Nadine Vogel: Tell us you know what that is what the mission is how how how things are delivered I may interrupt you a few times and Norma just because we're so excited and fire out more questions for everything you say about that.

Jane Dunhamn, NBDC: Sure um NBDC is a grassroots Community I mean Community across the United States, not a local communities of black disabled people and family members.

Jane Dunhamn, NBDC: We do advocacy but the advocacy is really in helping one another, and so I get the information through our website.

Jane Dunhamn, NBDC: I don't do quite so much training, but i've done training around race and disability to organizations.

Jane Dunhamn, NBDC: So pretty much wherever the need is um.

Jane Dunhamn, NBDC: We do through our website, the identity piece, but that takes second seat to giving people information that's going to improve the quality of their lives.

Jane Dunhamn, NBDC: And that's what i'm most focused on how do we improve the quality of life for a black disabled person and or their family members, what is it that they need to know.

Jane Dunhamn, NBDC: Life does not need to be hard because disability is in your life and so that was my my goal in establishing NBDC.

Jane Dunhamn, NBDC: And for a long time, I worked really within the identity piece, and I realized that I wasn't getting to people what they needed as far as it everyday life and what's important in their everyday lives.

Jane Dunhamn, NBDC: So that that's pretty much, much it, you know we've done legislative work.

Jane Dunhamn, NBDC: We were able to get a bill passed in New Jersey that had an agency do an annual evaluation of how services were rendered to people of color in the state.

Jane Dunhamn, NBDC: And that has been replicated in other states.

NORMA STANLEY: I was going to ask you i'm sorry to interrupt but why did you feel the need to do.

NORMA STANLEY: That, because that is a question that you know.

NORMA STANLEY: Why do people want, why do we separate that there was obviously a need.

Jane Dunhamn, NBDC: Oh, oh yeah I don't see it as a separation, I see it as a coming together and then examining because services were not delivered equitably.

NORMA STANLEY: hmm.

Jane Dunhamn, NBDC: So for me.

Jane Dunhamn, NBDC: The ableism and racism or part of the same package when it comes to people of color with disabilities, we can't separate out the racism that exists.

Jane Dunhamn, NBDC: And racism exists in disability, the same way, it is in other parts of our culture in the United States and our policies and so that that needed to be looked at and every time I spoke to a family of color well.

Jane Dunhamn, NBDC: i'll tell you I had a mom in Newark tell me, she was advocating for a young woman who was a single mom who had cerebral palsy.

Jane Dunhamn, NBDC: And I just recently heard about the movie King David I don't know if you're familiar with it, but then the tennis star is dead.

Jane Dunhamn, NBDC: And it's a scene and we're a social worker comes to the House, and this is the same thing that happens over and over again, a social worker came to this young woman's house.

Jane Dunhamn, NBDC: To do an assessment and she went in her refrigerator she just went over boundaries.

Jane Dunhamn, NBDC: And that woman who was advocating for her is.

Jane Dunhamn, NBDC: As a mom also now has an adopted with disabilities said.

Jane Dunhamn, NBDC: I don't believe they would go into a white family's house and go in the refrigerator and the behavior that was there, so it's really clear very, very clear that the differences, and I even before I got into.

Jane Dunhamn, NBDC: The advocacy and looking at the policy.

Jane Dunhamn, NBDC: Just a different sense of I experienced and having my daughter and and what that looked like, especially from first in the beginning with the medical profession and what the delivery and what that outcome was for me.

Jane Dunhamn, NBDC: And so, because of that.

Jane Dunhamn, NBDC: it's important that we look at race and when you think about it, why shouldn't disability have that component to it, we have an agency that looks at the difference in race for for healthcare.

Jane Dunhamn, NBDC: So if we have an agency that looks at race and healthcare, the office of minority health if we have HUD it looks at housing and urban development, why wouldn't we look at race within disability.

Nadine Vogel: So let me ask you Jane what was the outcome of that.

Jane Dunhamn, NBDC: Which one.

Nadine Vogel: Of the city, looking at the disparities in New Jersey.

Jane Dunhamn, NBDC: I don't I don't know because I was in state government at that time.

Nadine Vogel: Okay. 

Jane Dunhamn, NBDC: And I retired and then I was busy with NBDC and forming NBDC I have kept tabs and they have not been as.

Jane Dunhamn, NBDC: um.

Jane Dunhamn, NBDC: How can I be kind. No I try to be as kind of as I can as um fruitful as I should be and, following that but, again, this is where the advocacy piece comes in.

Jane Dunhamn, NBDC: This is where the racism comes in.

Jane Dunhamn, NBDC: The advocacy being it is black disabled people and family members that must make sure that these laws are upheld if they don't people ignore those laws.

Jane Dunhamn, NBDC: This is where the the racism come in, because, unfortunately, I will say all but many disability agencies are not necessarily geared towards the hard work of looking at race and what is happening around services for people.

Nadine Vogel: Well they're not they're not always ready to do the hard work that they're funded to do in the first place.

Jane Dunhamn, NBDC: Exactly .

Nadine Vogel: Even beyond race, you know I I can remember it, you know my daughter now is 30-31, I think, and I can remember you know, taking her to agencies in New Jersey.

Nadine Vogel: And because she didn't fit their mold and she had skills that perhaps they weren't used to if we really can't help it like you, are the you are get more funding than any other agency and you're right but, but if you don't fit.

Jane Dunhamn, NBDC: Whether it's race or anything else, what we found is, if you don't fit.

Nadine Vogel: nicely into their little you know box, how they define what they think they are there to do.

Nadine Vogel: You don't you don't get it, and I, and I think race just adds to that you know at my company in springboard we have a whole practice or an intersectionality and we have an event around it and we were talking at our event last fall around intersectionality relative to police brutality.

Nadine Vogel: And that you know people who are disabled are are subject to police brutality in many ways, just as much as the black and brown community and we had individuals there from the police for from other places that said, well, I am black and disable can you only imagine.

Jane Dunhamn, NBDC: Exactly you know what if i'm sorry I didn't mean to interrupt you, but we were saying when we really we those of us from across the country.

Jane Dunhamn, NBDC: Who do have been doing this advocacy work when we started what we would say was I remember, I was at a conference in California.

Jane Dunhamn, NBDC: This is at least 35-40 years ago and I said when I walked through the door I can't separate being black as separating being a mom of a disabled child my daughter will not be able to separate what her experiences as being a black person and what her experiences.

Jane Dunhamn, NBDC: We bring all of who we are to that table.

NORMA STANLEY. Exactly.

Nadine Vogel: And we need to learn.

Jane Dunhamn, NBDC: And, and it was then that we began to get some traction, not just because what I said, but all of us were saying the same thing that we can't separate out, who we are.

Jane Dunhamn, NBDC: To look at all of who we are.

Nadine Vogel: Absolutely, well, we are just at a point where we need to go on break I have.

Nadine Vogel: 15 minutes has just flown so let's do that let's take a short break for our listeners don't go anywhere, we will be right back.

Nadine Vogel: And what i'd love to do Jane is when we come back let's talk a little more let's go a little deeper into NBDC and what your core initiatives or and and how that's playing out that okay.

Jane Dunhamn, NBDC: that's fine Thank you.

Nadine Vogel: Alright, see you all in a minute.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: Hello everyone welcome back to the second half of today's episode of disabled lives matter Norma Stanley my co-host and I are interviewing the lovely Jane Dunhamn.

Jane Dunhamn, NBDC: Hello. [laughter.]

NORMA STANLEY: [laughter.]

Nadine Vogel: And um before we went on break.

Nadine Vogel: We said that when we came back Jane we want to hear a little bit more about NBDC.

Nadine Vogel: You know, initially, I think, right now, you have like I know you did a lot that you do, but I think there's like two core programs or initiatives that you're focused on right now wonder if you could share a little bit about that.

Jane Dunhamn, NBDC: yeah, these are the two programs that.

Jane Dunhamn, NBDC: Have financial backing and I just want to take this opportunity to thank those for money comes from contrai contributions and people have just been so generous any because of that generosity, we were able to start our um.

Jane Dunhamn, NBDC: our um.

Jane Dunhamn, NBDC: program or scholarship program last year was the first and we had fordham for awardees and we're hoping, you know it share that we can at least have, for, if not more, and grow from there, the reason that it's important is because.

Jane Dunhamn, NBDC: We want to get.

Jane Dunhamn, NBDC: As many children with an educa a college education as possible.

Jane Dunhamn, NBDC: People children who want to do this because i'm not a proponent that everybody should go to college I think people need to decide who and what they are and what they want to do, but the.

Nadine Vogel: People who are not.

Jane Dunhamn, NBDC: yeah for those who want to go to school, we want to provide that opportunity we want to help be part of that financial support.

Jane Dunhamn, NBDC: Primarily because it cost twice as much for disabled person to go to college, I learned that from from my daughter's experience in that although she had services for personal assistance.

Jane Dunhamn, NBDC: It wasn't enough to care to cover the cost of.

Jane Dunhamn, NBDC: The full time because my daughter has quadriplegic so she needed 24 seven living away from home so on top parents with non disabled kids were in college and talk about the expense, I say everyone add $40,000 a year to pay for some.

Jane Dunhamn, NBDC: Assistance and so because of that.

Jane Dunhamn, NBDC: type of expenses not everybody's expenses like that, but it is, it can be anywhere from 10 to $50,000 more.

Jane Dunhamn, NBDC: per year for a student with a disability to attend college, depending on their needs and families can afford that and then you look at families who are poor and they're poor from from from racism and the lack of opportunities.

Jane Dunhamn, NBDC: It was just really important that we were able to use that money that was donated to us to give back and establish that Program.

Nadine Vogel: So before we move on to to the other program should someone want to donate to that program or should we have a listener, who wants to go to college, who has a disability, how do they reach out to you guys about that.

Jane Dunhamn, NBDC: What they can do is go to blackdisability.org all one word blackdisability.org and the donation is there on the website, as well as the application for the scholarship program okay.

Nadine Vogel: Great Thank you so your other your other big program that that you're being funded for now is, I believe, to have an attorney on staff.

Jane Dunhamn, NBDC:  Yes.

Jane Dunhamn, NBDC: You got me just clarify we're working on funding for that particular program that that's what we're working towards.

Nadine Vogel: Why do you need an attorney.

Jane Dunhamn, NBDC: Because we get so many phone calls or emails.

Jane Dunhamn, NBDC: about people who need some direction disabled people who are homeless, the people who are unable to get services.

Jane Dunhamn, NBDC: From vocational rehabilitation services it's across the board it's a myriad.

Jane Dunhamn, NBDC: of issues that people encounter as you also have mentioned that there's the incarceration piece the justice, piece of things that come up where people have been unduly harassed by the police, because of disability, so that is something that.

Jane Dunhamn, NBDC: it's real important that even if NBDC can afford to pay an attorney to take on individual cases, having an attorney who will hear the issue, who can direct families, yes, you do have a real legal case, and this is where you need to go or to have that roster.

Jane Dunhamn, NBDC: would be really helpful to have that person that's on board that folks can get in touch with and have a consult what is the issue and have that open attorney really give them the advice.

Nadine Vogel: mm hmm yeah you know it's it's a shame that.

Nadine Vogel: it's a shame there's such a need for that.

NORMA STANLEY:  Exactly.

Nadine Vogel: I mean Norma when I hear about that you know, again we have adult children with disabilities and you know.

Nadine Vogel: I can think over the years of different issues that that we've had or maybe that you had, but you have the means to get what you need but think of all the people out there that don't.

Jane Dunhamn, NBDC: Yeah.

NORMA STANLEY:  Absolutely.

Jane Dunhamn, NBDC: And just and just from the medical profession, and I am going to share a very personal story because it's the beginning.

Jane Dunhamn, NBDC: When my daughter was born.

Jane Dunhamn, NBDC: There was an issue with the doctor.

Jane Dunhamn, NBDC: and

Jane Dunhamn, NBDC: Two things that were really important, without going through all the steps of what happened during that delivery in the medical piece.

Jane Dunhamn, NBDC: But I think it was a couple of weeks, maybe two weeks after my daughter was born, it was a notice in the paper that she and her husband had bossier license in New Jersey, because of selling drugs out of their their um their office.

NORMA STANLEY: Wow.

Jane Dunhamn, NBDC: And so um I had friends that worked in the hospital where my daughter was born and it's a Jane you really need to to look into this.

Jane Dunhamn, NBDC: I was young.

Jane Dunhamn, NBDC: The doctor told me that my daughter probably would be live to be three or four if I was lucky I wasn't thinking in terms of legalities I was thinking in terms of keeping my baby alive.

Jane Dunhamn, NBDC: And so, these sort of things happen over and over again so from the health care and doctors and what happens.

Jane Dunhamn, NBDC: And let me just go back because it's important to me that.

Jane Dunhamn, NBDC: When I went to get.

Jane Dunhamn, NBDC: my daughter registered they didn't have a record of her birth, I had to go to the hospital to get a record for birth to take to City Hall, to make sure that she was registered, and when I got I was mistakenly given documentation and what it said was on her the medical.

Jane Dunhamn, NBDC: chart with living child with a question mark.

NORMA STANLEY:  Wow.

Jane Dunhamn, NBDC: So it was all kinds of stuff that happened.

Jane Dunhamn, NBDC: In that hospital and that was the very beginning of my journey as a single parent with a child, with a disability.

Jane Dunhamn, NBDC: So you look at that medical stuff that happens to us and how we're in danger, and how our children or our loved ones are in danger, and then you look at at the.

Jane Dunhamn, NBDC: justice system and what happens with people with disabilities and then you look at service delivery, the need is across the board.

NORMA STANLEY: Today, with the situation where people who are just you know black mothers who are having more of their children die, and all the mothers are dying.

NORMA STANLEY: In general, there is something going on in terms of the care and that needs to be looked at.

NORMA STANLEY: Because there are more.

NORMA STANLEY: incidences of those things happening.

Nadine Vogel: yeah.

Nadine Vogel: No. Absolutely.

Nadine Vogel: Well, as we're on this topic of care and health care and medical care, I think, normal you and I would be remiss not to ask Jane about Covid.

Nadine Vogel: And the any impact, but you know Jane what I want to know is the impact of covert if there has been an impact on you on your daughter it on the families you serve what has your experience been.

Jane Dunhamn, NBDC: Um Covide has been devastating for the disability Community um did you see the the.

Jane Dunhamn, NBDC: interview that the with the CDC director said that's been a hot topic, the last couple of days.

NORMA STANLEY: Yes.

Jane Dunhamn, NBDC: I don't know Okay, so that you know that.

Jane Dunhamn, NBDC: People that had these coexisting. um.

Jane Dunhamn, NBDC: issues where the folks who died from from from Covid and so, not just the folks who had died, but the other thing that hasn't been talked about.

Jane Dunhamn, NBDC: Except for advocates and they have not been able to if they even the historical or disability organization had not been able to get that across to to government agencies that people with disabilities are hit hard because of the vulnerability because of.

Jane Dunhamn, NBDC: immune systems already being compromised, and so it hit our household too because of.

Jane Dunhamn, NBDC: The first vaccine that my daughter got back last March, the very next day she woke up and she couldn't see she had vision issues and it took us about.

Jane Dunhamn, NBDC: A month and a half, maybe two months before we're able to get to the bottom of it, and she has a myasthenia gravis, which is an auto immune.

Jane Dunhamn, NBDC: disability and so in the beginning it was okay well there's not enough scientific proof.

Jane Dunhamn, NBDC: To say that but, as time has gone on, yes, they have been able to make that connection, and as of I think recently this only been maybe three people in the country that had a connection between the vaccine and myasthenia gravis.

Jane Dunhamn, NBDC: So.

Jane Dunhamn, NBDC: One of the things that I guess wanted to get out to people what we have done Oh, let me just back up.

Jane Dunhamn, NBDC: and make connect the dots with this my daughter had to retire from her her job she worked for the US Department of Labor here in Washington for 24 years but.

Jane Dunhamn, NBDC: With with her other impairments, and now with this, because she is in pain and even though she can see she cannot look at a screen and be at TV computer screen.

Jane Dunhamn, NBDC: More than maybe 15-20 minutes and then she has to put the blindfold on so it it just we're hoping that she can go into remission but it hasn't happened yet so she has retired from that.

Jane Dunhamn, NBDC: But one of the things that I want people to know is that anybody who has had.

Jane Dunhamn, NBDC: A condition as a result of the vaccine, that there is an agency and it's called Countermeasures Injury Compensation Program and it's under HRsa.gov/cicp, so they really should.

Jane Dunhamn, NBDC: Go to the website, because they asked if you had any sort of.

Jane Dunhamn, NBDC: Other condition as a result of the vaccine and and that's important for people to do.

Jane Dunhamn, NBDC: And so you say from the people that we know people were calling in as my daughter talked to her friends and her friends are community of people with disabilities oh yeah one of her friends.

Jane Dunhamn, NBDC: Had a mini stroke, she was able to come back from it.

Jane Dunhamn, NBDC: And then, as as much as when I came to my daughter's I was renting a car, and I was at the car rental place and talking about why I was here, and the man said.

Jane Dunhamn, NBDC: I wouldn't tell anyone i'm not really part of the disability community, he says, but I have.

Jane Dunhamn, NBDC: Diabetes and I had a reaction to the vaccine, so no matter where I went I was hearing these stories that people that have other impairments had had had a serious reaction from the vaccine, and so I was really glad to hear.

Jane Dunhamn, NBDC: I read an article.

Jane Dunhamn, NBDC: That the advocate advocacy agency, the larger ones, wrote in response to the CDC CDC directors.

Jane Dunhamn, NBDC: disrespectful comment around people with disabilities and Covid dying.

Jane Dunhamn, NBDC: that they will be looking at these issues because it's both issues are equally important, the fact that people died and what does that look like, because one of the things that I learned that I had medical people that I asked was that when studies are being done.

Jane Dunhamn, NBDC: And trials being done for for for for the medicine and new vaccines, they don't use people with disability.

Jane Dunhamn, NBDC: They use the strongest and healthiest.

Jane Dunhamn, NBDC: People as subjects.

Jane Dunhamn, NBDC: And so, that means they don't know how other folks are going to respond to it and i'm surely not in a position to say how that should work.

Nadine Vogel: Right.

Jane Dunhamn, NBDC: But but that's something that needs to be looked at, and I also just want to clarify I would never say to anyone not to get the vaccine, even though it had devastating effect for my daughter too many people in this country have died, however.

Jane Dunhamn, NBDC: If people get a vaccine and they have a reaction a life altering reaction, I do believe the government does have some responsibility.

Jane Dunhamn, NBDC: yeah I feel as if they.

Jane Dunhamn, NBDC: Take they've taken it for the great the greater good, they take they take the hit for the greater good this important that people get the vaccine, but if there is an issue that.

Jane Dunhamn, NBDC: There should be some sort of compensation for people's having a life altering experience.

Nadine Vogel: yeah you know, in my experience and Norma, I don't know about you, but I have found that when someone with a disability.

Nadine Vogel: In this situation, Covid gets a vaccine has a reaction gets into a car accident gets her that the the general rule of thumb is we blame it on the original disability.

NORMA STANLEY:  Yes.

Nadine Vogel: And it has nothing to do with that you were you know rear ended with your car nothing to do with you took this vaccine that we know you don't know a lot about and again i'm a proponent of the vaccine.

Nadine Vogel: and getting boosted, and all that, like you, Jane so, I agree, but I think is a bigger issue a play that I think you touched on, which is just that.

Nadine Vogel: Again, it goes back to the discrimination, the health disparities around people with disabilities in terms of no matter what happens oh it's not our fault, they were disabled before I must have been that it's not this it's because of their disability is just coming out now after 30.

Nadine Vogel: Things lLike that it's very frustrating.

Jane Dunhamn, NBDC: yeah and really it's because of the impairment, because I look at disability, people are on disabled because of ableism because of the discrimination so it's the actual impairments that people have the body mind differences that they keep going back to I mean we're we're mom so.

Jane Dunhamn, NBDC: I don't know if you've experienced, but by the time I do it, it was 10 years old, you know us she still gets gets hers falls down or get sick and and nothing to do with the cerebral palsy.

Jane Dunhamn, NBDC: And every time we went to a hospital the intake was tell me about your delivery it's like she has pneumonia, why are we talking about my delivery 10 years ago.

Nadine Vogel: yeah oh my God that is so true.

Jane Dunhamn, NBDC: And I hear that from adult people with disabilities.

Jane Dunhamn, NBDC: That whenever they are in a medical situation they have to be firm and this is why i'm here, and you know you're crossing boundaries you're going into personal matters that has nothing to do with where I am i'm here today.

Jane Dunhamn, NBDC: So there's still a lot of.

Jane Dunhamn, NBDC: work to be done.

Nadine Vogel: Right or you know that my my pet peeve that Norma's heard me talk about this that you know i'll accompany my daughter let's say to a doctor to a hospital or something.

Nadine Vogel: And you know she she drove there she's communicating with them she's college educated and they look at me and say so mom you know and then i'm like one i'm not your mom and to why you're talking to me i'm just like hearing it like it, it just makes me crazy.

Jane Dunhamn, NBDC: yeah yeah yeah.

Nadine Vogel: It makes me crazy. Well, unfortunately what's making me crazier is that we are out of time. Oh my God.

NORMA STANLEY: I know. Great conversation.

Jane Dunhamn, NBDC: Thank you for inviting me and it was a pleasure.

Nadine Vogel: This was delightful just delightful and, and so the work you're doing Jane is so incredibly important, and I just hope we have ways to talk with you more and.

NORMA STANLEY:  Yes.

Jane Dunhamn, NBDC: If I have a minute just to add one is the conversation we need to get to, but I wanted to talk just a little bit about impairmentISM and I won't go into it, because we're at a time, but when.

Jane Dunhamn, NBDC: We as a disability community must come together we must come together we are so separate by separated by a medical diagnosis.

Nadine Vogel:  Absolutely. 

Jane Dunhamn, NBDC: And so.

Jane Dunhamn, NBDC: i've come up with impairmentism I know what used in the academic field but different people use a different ways.

Jane Dunhamn, NBDC: And it's been very frustrating for me for people that I care about.

Jane Dunhamn, NBDC: who have disabilities don't have intellectual disabilities get so insulted if someone thinks they have an intellectual disability and it's like why.

Jane Dunhamn, NBDC: It you know if you think that's such a big thing, what do you what are you thinking about people's intellectual disability their your brothers and your sisters too why are you fighting to prove to the world how smart, you are.

Jane Dunhamn, NBDC: If you are, you are, and if somebody doesn't think that, why are you so offended.

Jane Dunhamn, NBDC: That means does your brothers and sisters with intellectual disabilities, need to be offended, we need to come together and stop trying to say well there's a hierarchy here, and this person's impairment, it makes me.

Jane Dunhamn, NBDC: More or less than who I am.

Jane Dunhamn, NBDC: And I really would like to see an end to that I looked at colorism and colorism is a prejudice or discrimination against indigenous with a dark skin tone typically among people have the same ethnic or racial group.

Jane Dunhamn, NBDC: And impairmentism is the same thing I coined it as prejudice or discrimination against individual with intellectual disabilities from disabled people.

Jane Dunhamn, NBDC: And the need by disabled people to convince others that they do not have an intellectual impairment and so that's something that I really want to talk about and and really come together, especially because academics really set the tone for disability studies and yet.

Jane Dunhamn, NBDC: I just don't find that there is enough of coming together.

Jane Dunhamn, NBDC: Around, including people with intellectual intellectual disabilities as a family of disability.

Nadine Vogel: So it's interesting that you say that, though I mean, I agree with you 500% whether it's colorism it's ableism, you know impairment isn't any of those isms I me.

Nadine Vogel: yeah yeah.

Nadine Vogel: Right.

NORMA STANLEY: There's too many isms.

Nadine Vogel: Exactly if you could remove all the isms would be good. um I do think, though, and this is just from my experience in working with corporations.

Nadine Vogel: And the employment of people with disabilities, I do see one of the reasons I don't say right or wrong, but I see it as one of the reasons this occurs with the disability Community around cognitive disabilities.

Nadine Vogel: Is that companies tend to lump everyone together and they'll say Oh well, this position requires you know someone with a college degree or this position requires you have a disability well obviously you couldn't do that, and so this.

Nadine Vogel: There are assumptions that are made about people with disabilities, that if you have a disability and must also impact your cognitive ability and therefore.

Nadine Vogel: You wouldn't be eligible for this position, so I do think that there's an issue there and we we do a lot of Springboard where we training companies and training executives, so that they don't think that way because it when they do it contributes to exactly what you were just talking about.

Jane Dunhamn, NBDC: Well yeah I think that's from a policy perspective.

Jane Dunhamn, NBDC: But i'm looking at.

Jane Dunhamn, NBDC: Individuals who really are accomplished individuals who get highly offended then when when someone thinks that they have intellectual impairment and it's like let.

Jane Dunhamn, NBDC: It go they've already been people already established them and they're sitting where they need to be sitting.

Jane Dunhamn, NBDC: But

Jane Dunhamn, NBDC: If someone comes up I've sat with someone doing an event, and it was an event for people with disabilities and he was from out of state and other people with disabilities, because of the speech impairment thought that he had an intellectual disability.

Jane Dunhamn, NBDC: Those are his brothers and sisters, why are you so annoyed by this.

Jane Dunhamn, NBDC: And so i'm saying more from a person to person people to people.

Jane Dunhamn, NBDC: We need to start making these hierarchies ourselves.

Jane Dunhamn, NBDC: that's.

Jane Dunhamn, NBDC: that's where I sit with that.

Nadine Vogel: I agree.

Nadine Vogel: When I when I hear stuff like that i'm like you know I get over it get over yourself.

Jane Dunhamn, NBDC: yeah.

Jane Dunhamn, NBDC: yeah.

Jane Dunhamn, NBDC: yeah but.

NORMA STANLEY: It comes downs to everybody being their.

NORMA STANLEY: authentic self.

Jane Dunhamn, NBDC: I know, but.

NORMA STANLEY: And a lot of people don't know how to do that.

Jane Dunhamn, NBDC: Yeah and and it's a little bit it's a lot more complicated than that, but I think, as long as we talk about it, because if that's if that's the case it's like Okay, we get to me saying and.

Jane Dunhamn, NBDC: And the Jim crow South why don't you get over yourself.

Jane Dunhamn, NBDC: Yeah it's a little bit more embedded than that and we.

Jane Dunhamn, NBDC: Just need to be aware of who we are and and and where we see people in the world yeah.

Nadine Vogel: Jane what what can we do to help move that along, because I do think it's important.

Jane Dunhamn, NBDC: I think we can can begin to talk about it amongst ourselves in our Community.

Jane Dunhamn, NBDC: there's a lot of talk that we need to do that, amongst ourselves and amongst our families, so the talk that adult people with disabilities have and who we talk among ourselves as one conversation then there's the conversation of.

Jane Dunhamn, NBDC: Families, we as family members can advocate.

Jane Dunhamn, NBDC: For for our kids we can do over the health care, but when we sit with family members who treat our children less than the other kids in the family, those conferences conversations go silent, because if you're too vocal about it there, she goes again.

Jane Dunhamn, NBDC: And it's actually you with the rest of your family, so we need to talk around ourselves as people with disabilities and then we need to talk around our families and it's really, really hard, but we have to have conversations, aside from policy.

Nadine Vogel: Compensation was family conversations, they are, we can have a whole discussion just on that topic.

Nadine Vogel: And maybe we'll come back and do that.

Jane Dunhamn, NBDC: Okay.

Jane Dunhamn, NBDC: Well i'm sorry to take more time, but thanks so much.

Nadine Vogel: Again, thank you so much, and thank you for everything that you do.

NORMA STANLEY:  Yes.

Nadine Vogel: Okay bye.

Jane Dunhamn, NBDC: bye.

Norma Stanley: Have a blessed one.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S1-Ep39_Nadine_and_Norma_Season1_close

S1-Ep39_Nadine_and_Norma_Season1_close

December 3, 2021

Season 1, Episode 39
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: N/A

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Well Hello hello to all our listeners, this is nadine vogel and Norma Stanley, Norma say hey to everybody.

NORMA STANLEY: hey everyone how's it going.

Nadine Vogel: We, as you know, are your fabulous co hosts of disabled lives matter which is more than just a podcast, it is a movement, and you know I think thinking about this a lot norma I think we have created a movement.

NORMA STANLEY: I I really pray we did.

NORMA STANLEY: It is so much needed and the seems like it's starting to take some steam.

Nadine Vogel: yeah absolutely so first Norma, I would like to apologize to everyone for not being with all of you for thanksgiving so we.

Nadine Vogel: hope that you all had a fabulous thanksgiving holiday with friends with family that you got to eat lots of Turkey or whatever fixings that you like, I know that I was stuffed probably more so than the Turkey.

[laughter]

Nadine Vogel: How about you norma.

NORMA STANLEY: Oh absolutely I i'm still eating it i'm done with it now, though.

Nadine Vogel: Oh gosh no, we still have it ah, ya, yay.

Nadine Vogel: So what we thought we would do today is instead of having a guest we thought we would be our own guests.

Nadine Vogel: And have a conversation and I don't know how many of you have tuned in to this really cool program called disability in America it's being.

Nadine Vogel: Hosted by the Washington Post and the Ford foundation Frances Stead Sellers is the person she's a senior writer at the Washington Post and she's been interviewing individuals.

Nadine Vogel: And today, I just heard wasn't actually say but earlier, I heard one of the programs, and it was about how disability drives innovation.

NORMA STANLEY: mm hmm.

Nadine Vogel: and norma I thought wow that's like right up our alley right like we.

NORMA STANLEY: I love it.

Nadine Vogel: Really we've been talking about that, and they have three individuals on Sinead Burke, who does.

Nadine Vogel: adaptive let me think, I think, she does fashion and she has dwarfism and she does advocacy She then there was Wesley Hamilton so Sinead Burke Wesley Hamilton he does adapted physical training.

NORMA STANLEY: mm hmm.

Nadine Vogel: it's really cool he uses a wheelchair, and then Jeffrey Mansfield is deaf and is an architect.

NORMA STANLEY: Yeah.

Nadine Vogel: And so talking about different aspects of innovation.

Nadine Vogel: And one of the things that just really resonated with me and I thought it'd be good to talk about is you know when the A-D-A came out, it was it was the basic minimum right, it was.

NORMA STANLEY: That's right.

Nadine Vogel: Right and I get frustrated and I know you do norma about you know companies that tout well you know we're A-D-A you now compliant and we're A-D-A accessible, well like all right, so what.

Nadine Vogel: That's the law.

NORMA STANLEY: mm. hmm.

Nadine Vogel: Or if in another country meeting those minimum minimum guidelines and what they were talking about was you know amplification.

NORMA STANLEY: mm. hmm.

Nadine Vogel: Like in architecture amplify the design codes and the standards in the built environment so that it's not just compliant but it actually promotes delight.

NORMA STANLEY: That's right.

Nadine Vogel: It's not check the boxes let's create this amazing experience for people.

NORMA STANLEY: Exactly exactly and and why not I mean the population calls for this it's a huge population.

NORMA STANLEY: And.

NORMA STANLEY: You know it's not just individuals it's the network and there's a global network why not the families individuals make life easier for everyone.

Nadine Vogel: Absolutely, and you know it's funny because Jeffrey as he was talking about, I was imagining he's talking about airport someone had asked. A question about airports.

NORMA STANLEY: mm. hmm.

Nadine Vogel: And you do you remember the days when you were waiting for the plane, the only way you knew they were boarding was either you saw the mass exodus right going out the door to the plane, or they were on those you know handheld speakers which were hard to understand anyway.

NORMA STANLEY: Yeah.

Nadine Vogel: And announcing you know group A group B, but now you see them on screen as well.

NORMA STANLEY: Oh.

Nadine Vogel: So there's a screen above the door that says, you know now boarding this class or now recording group A group B so if someone is deaf or has hearing loss, they can just look at the screen.

NORMA STANLEY: Yup.

Nadine Vogel: Right so that it's it's there's multiple ways of providing access and I thought that that was really important and something Jeffrey said, we were talking about this minimum the minimum standards, and he said why can't we create maximum why.

NORMA STANLEY: Exactly.

Nadine Vogel: Why is it always have to be.

NORMA STANLEY: Bare miniumum.

Nadine Vogel: Right. Why aren't we looking at the culture of people with disabilities and it is a culture right.

NORMA STANLEY: Absolutely.

Nadine Vogel: Why don't we design.

Nadine Vogel: Tools and areas to uplift people.

NORMA STANLEY: That's right.  Why don't they it just boggles my mind I.

NORMA STANLEY: don't understand it, I just don't.

Nadine Vogel: yeah it does and have you i'm sure you've experienced you know people say Oh, people with disabilities as if all disabilities are the same and all people.

NORMA STANLEY: Right.

Nadine Vogel: As if it's monolithic.

NORMA STANLEY: Right.

Nadine Vogel: As opposed to intersectional.

Nadine Vogel: Right. Because there are people who are deaf or blind with physical disability and some people don't have more than one.

NORMA STANLEY: That's right.  And many people do.

Nadine Vogel: Ab absolutely, and so the question was you know how do we build with disability narrative in mind get away from that old medical model which A-D-A in some ways still although it's created amazing opportunities it's still in some ways, almost feels like the old medical model of disability.

Nadine Vogel: Right. So how do we, how do we look and create something that brings memory and brings culture and brings all kinds of narratives that really are truly representative of and positive for people with disabilities.

NORMA STANLEY: That's the $100,000 question i've gotta say.

NORMA STANLEY: You know.

NORMA STANLEY: Each of the various cultures that are out here who are fighting for their own individual space in society.

NORMA STANLEY: It was always a journey was always a process, it was definitely not overnight, and you know the disability Community now being one of the largest consumer segments, and as well as you know, a major population, they are now fighting for that voice and that space and um.

NORMA STANLEY: You know it's time for people to start to take notice and they are starting to take notice which is a good thing, which is one of the reasons why this whole Washington Post that took place.

NORMA STANLEY: But still, like you, like Mr. Mansfield said, while we still at the bare minimum it's been there's been enough people in the disability Community here in our society that should have been happening all along.

Nadine Vogel: Right.

NORMA STANLEY: But I guess, we have to start somewhere.

Nadine Vogel: Yeah, absolutely.

Nadine Vogel: Well The other thing I thought was really interesting so Wesley um is is someone who uses a wheelchair.

NORMA STANLEY. mm. hmm.

Nadine Vogel: He is disabled because he was shot with a bullet. 

NORMA STANLEY. mm. hmm.

Nadine Vogel: You know.

Nadine Vogel: What I found fascinating, though, is that he was overweight his whole life, and I think about he does he deals with accessible gyms.

NORMA STANLEY. Yes.

Nadine Vogel: Physical fitness working out with a disability. Right and I think calls it adapted athletics, but he said he was overweight his entire life it wasn't until he became disabled and using a wheelchair that he got into shape.

NORMA STANLEY. Wow.

Nadine Vogel: Now, think of how in many ways that's the opposite of what most people think right. Most people think if you become disabled and you start using a wheelchair you're not going to exercise.

NORMA STANLEY. Right.

Nadine Vogel: Right.

Nadine Vogel: You really have to watch what you eat because you're just going to blow up and get big and he said that because of his lack of physical acuity.

NORMA STANLEY: uh huh.

Nadine Vogel: When he became disabled he was so out of shape.

NORMA STANLEY: mm hmm.

Nadine Vogel:  That that in and of itself became disabling.

NORMA STANLEY: Yes.

Nadine Vogel: Right. And that's what really forced him to realize, you can and need to be in great physical shape you're going to be, you know operating a wheelchair you're going to be doing all these things.

Nadine Vogel: So it was fascinating and he was talking about how gyms and all kinds of related facilities and not accessible to people with disabilities.

Nadine Vogel:  And at springboard um our team that does physical accessibility audit we've had an opportunity, many times to when we're on a company's campus to see their company gyms.

NORMA STANLEY: mm hmm.

Nadine Vogel: And it's always fascinating to see the inaccessibility.

NORMA STANLEY: They don't they don't think about it again I don't think they really notice when they're building these places, whether it's a you know development, the housing development or real estate place.

NORMA STANLEY: Things they they don't have people who understand what's needed as part of that planning process today.

NORMA STANLEY: And you would think that they would remember.

Nadine Vogel: Yes.

NORMA STANLEY: To do that. 

Nadine Vogel:  You would think.

NORMA STANLEY:  You would think.

Nadine Vogel: You would think so, the other, the other topic that that they focused on was fashion and the fashion industry and stayed all about that, and she works with the fashion industry.

Nadine Vogel: Um so something she said that really resonated with me and she said that the the fashion industry is one that creates and cultivates culture.

NORMA STANLEY: mm. hmm.

Nadine Vogel: Right you think of all the magazines fashion magazines right.

NORMA STANLEY: That's right.

Nadine Vogel: So if if that industry is really setting the benchmark for culture.

NORMA STANLEY: Yes. 

Nadine Vogel: That industry is ignoring people with disabilities.

NORMA STANLEY: Yes. 

Nadine Vogel: Right then there you go.

Nadine Vogel: So.

Nadine Vogel: You know, we have a lot of adaptive fashion, now that has come about.

NORMA STANLEY: Yes. 

Nadine Vogel: But again, she made a really good point is like okay so we're creating this adaptive fashion, but are we also ensuring that the fashion designers of people with disabilities.

NORMA STANLEY: Right.

Nadine Vogel: Right the various suppliers, the various parts of that supply chain.

NORMA STANLEY: Yes. 

Nadine Vogel: So that. It's considered all the way around.

NORMA STANLEY: That's right.

Nadine Vogel: And why is the general design and then adaptive Why is it, why don't we think about adopted more universally and she gave a great example I started laughing and she and I know you relate to this.

NORMA STANLEY: Uh huh.

Nadine Vogel: So she used the example for women or anyone who chooses to wear a dress.

NORMA STANLEY: Yeah. 

Nadine Vogel: The zipper is always in the back.

NORMA STANLEY: Yes. 

Nadine Vogel: Right so she said, who design dresses with zippers in the back.  men, because she said, the idea was you know if you're if you're a woman by yourself, you know you probably have to be contortionists to try to unzip that dress.

NORMA STANLEY: Yes. 

Nadine Vogel: Right.

Nadine Vogel: So the assumption is, you would have a husband someone with you.

NORMA STANLEY: Um hmm.

Nadine Vogel: That could do that.

NORMA STANLEY: Yeah.

Nadine Vogel: Now I don't know about you i've been in hotels and you know countries even like India, where it's really not appropriate and i've gone to the front desk and asked could you zip this up for me.

[laughter]

Nadine Vogel: So she made a really good point and said so, it would not be a don't, we have to adapt that and that's for everybody.

NORMA STANLEY: That's for everybody.

Nadine Vogel: That's just not just for people with disabilities um the other thing she made a really good point of was where does the fashion industry, employment, where we see fashion industry, employment, most of the time it's in the retail world.

NORMA STANLEY: Like going to the malls store.

Nadine Vogel: But other retailers really thinking about accessibility are they thinking about their flooring so it's more accessible to people.

NORMA STANLEY: Right.

Nadine Vogel: And it was it was just it was you know it didn't tell me and i'm sure if i'm saying anything to you that you didn't already know.

NORMA STANLEY: Right.

Nadine Vogel: But the fact that they were putting it out there.

NORMA STANLEY: That's what I love about it, I think it's really helpful to have you know, a major outlet like the Washington Post and the Ford foundation.

NORMA STANLEY: To make that possible.

NORMA STANLEY: And that it's a continuing conversation that's important.

Nadine Vogel: Right.

NORMA STANLEY: And it's bringing a level of prejudice to do it to to how important the disability community and how significant they are.

Nadine Vogel: Right.

NORMA STANLEY: You know, in our society, and people need to know that.

Nadine Vogel: Right.

Nadine Vogel: Because you think about the Tommy hilfiger line let's just use that as an example.

NORMA STANLEY: mm hmm.

Nadine Vogel: Their first line was for kids. with disabilities.

Nadine Vogel: For adaptive clothing well what if it's not the child that has a disability, but it's the mom or dad.

NORMA STANLEY: Right and children grow up.

Nadine Vogel: Right. So how do we, how do we connect the dots and ensure that we're just all we all wear clothes.

NORMA STANLEY: Always.

Nadine Vogel: Right.

Nadine Vogel: We should all be seen as customers and you know how do we do this in a way that systematic.

NORMA STANLEY: mm hmm.

Nadine Vogel: It's sustainable.

Nadine Vogel: You know what does that look like and how do we ensure that the businesses, even beyond fashion right that that they're doing that.

NORMA STANLEY: Right.

Nadine Vogel: And some words that you know that she brought up that again not new but equitable just creative and accessible for all, and I think you know that that says it right, because you know I had the opportunity to work with the Hilfiger line, and you know.

Nadine Vogel: You know.  For Sierra right.
 

Nadine Vogel: How you. What you wear affects how you feel.

NORMA STANLEY: Absolutely absolutely i'm a big proponent of dressing up and looking good.

Nadine Vogel: I know you are, cause you because I've seen you.

[laughter.]

Nadine Vogel: You are always looking hot. babe.

NORMA STANLEY: I thank you very much.

Nadine Vogel: And Sierra by the way.

NORMA STANLEY: Exactly Sierra does not leave the house in anything but you know, on top of a fashion game that's just the way we are, and you know.

NORMA STANLEY: Just because she's in a wheelchair doesn't mean she can't look and she knows the difference when she looks like just regular, which is that on something that's designer or looking something really cool.

NORMA STANLEY: She knows it.  And and and she she has a different air about her when she's dressed up.

Nadine Vogel: Exactly exactly and so take that out of fashion for a second.

NORMA STANLEY: mm hmm.

Nadine Vogel: And think about when a business creates you know, an accessible bathroom.

Nadine Vogel: Right and they make it. to code.

NORMA STANLEY: mm hmm.

Nadine Vogel: It's not pretty typically they're not putting the pretty in it like you see in some of these you know beautiful hotels luxury hotels. Right.

NORMA STANLEY: Right.

Nadine Vogel: And and and again, why not if there's an accessible restroom why doesn't that one have full length mirrors, why is that always just the smaller one right assuming you're in a wheelchair, like those are the kinds of things that nobody's thinking about.

NORMA STANLEY: Nope.

NORMA STANLEY: And that's what I need people like us.

[laughter.]

Nadine Vogel: You got that right. babe.

Nadine Vogel: You got that right.

NORMA STANLEY: Cause we think about it all the time.

Nadine Vogel: Right, and so, how do we move from I mean I know i'm always talking to companies that you know how do you move from compliance not just to best practices, but even just better practices, improved practices right next practices, you know the best practice thing is kind of old.

NORMA STANLEY: Yeah.

Nadine Vogel: Right.

NORMA STANLEY: Yeah it is, but you know, I guess with any kind of a real change.

NORMA STANLEY: It starts with the top.

Nadine Vogel: Absolutely.

NORMA STANLEY: And the leaders of these companies are still resisted in many ways the same, I mean that's why the whole D-E-I thing is still still has to be addressed, because the leaders of these companies are still not truly committed.

NORMA STANLEY: The same thing just made from top down.

Nadine Vogel: Too you know company leaders talk about innovation, all the time they need innovation, and now they certainly need employees right.

Nadine Vogel: But. They need innovation um people with disabilities are so innovative, they have to be.

NORMA STANLEY: They have to be. Yes.

Nadine Vogel: I see you see it in Sierra I know I see it in my own daughter and colleagues and friends right they have to be innovative, so if we take a step back and realize that disability in and of itself and people with disabilities can drive innovation.

NORMA STANLEY: Yes. 

Nadine Vogel: My gosh shouldn't we have more people with disabilities.

Nadine Vogel: At the table.

NORMA STANLEY: Participating.

Nadine Vogel: For everything we talked about.

NORMA STANLEY: Exactly exactly.

Nadine Vogel: Someone said to me, nothing about us without us kind of thing.

NORMA STANLEY: Yes. 

Nadine Vogel: And it's it's, how do we ensure that we're, including the voices and not just the voices, we want to hear but.

Nadine Vogel: All voices and and I think this applies to race it applies to sexual orientation, 

NORMA STANLEY: Yes. 

Nadine Vogel: Right because, again, equity, as I always say it's not about treating everyone the same but rather by giving everyone the same opportunities.

NORMA STANLEY: Yes. Absolutely.

Nadine Vogel: But. We have to bring them to the table to do that.

NORMA STANLEY: We do, and let them be free enough to actually speak give them the know the authority.

NORMA STANLEY: To be able to feel comfortable.

Nadine Vogel: Yeah.

NORMA STANLEY: To say that's wrong.

Nadine Vogel: Right. Absolutely.

Nadine Vogel: You know what disability disabilities do matter. Right.

Nadine Vogel: And I think that you know when I think about this first season, I mean you know it's it's it's interesting because we're concluding our first season of the pilot.

NORMA STANLEY: I know. Right.

Nadine Vogel: And I still feel like oh my gosh you're talking about the first episode.

NORMA STANLEY: Yeah.

Nadine Vogel: So we're concluding the first season and I.

Nadine Vogel: I think about all the people that we've interviewed.

NORMA STANLEY: mm hmm.

Nadine Vogel: I you know I feel like a mom you know I can't pick which one's my favorite.

NORMA STANLEY: I know there have been some awesome guests.

Nadine Vogel: For all and and what makes these guests so awesome is what they have done, not in spite of but because of their disability.

NORMA STANLEY: Yeah.

Nadine Vogel: And and and taking that and run with it, and I just hope that our listeners who don't have disabilities, really, really, you know pay pay heed to that.

Nadine Vogel: And really get that you know.

NORMA STANLEY: Yeah yeah when my daughter, and I were at NBC the other day, because she had an opportunity to be an extra on NBC TV show that's going to be airing in January.

NORMA STANLEY: And one of the production assistants, and it was a room full of people with disabilities, of all types across the spectrum and he was going on, he said he never seen that many people with disabilities that he didn't know hw didn't realize.

NORMA STANLEY: That so many different.

Nadine Vogel:  Wow. 

NORMA STANLEY: So. that's what I said.

NORMA STANLEY: Wow. That was interesting he was a young man, he was maybe about 25.

Nadine Vogel. Right.

NORMA STANLEY: He was very curious about how the people either acquired it or was it that they had and how they were living in doing that everybody in the room, were doing the thing I mean.

NORMA STANLEY: They were doing their thing, and he.

NORMA STANLEY: It encouraged him and it made him curious.

Nadine Vogel: Well what's interesting though about that Norma is that you know one hand i'm like does he live under a rock like.

NORMA STANLEY: I know. Right. That's what I said.

Nadine Vogel: But on the other hand, if companies are not hiring enough people with disabilities.

NORMA STANLEY:  RIght.

Nadine Vogel: He's certainly not seeing them as colleagues.

NORMA STANLEY:  Exactly.

Nadine Vogel: Right and you spend you know a good chunk of your day working.

NORMA STANLEY:  That's right.

Nadine Vogel: And if we're not doing more to have people with disabilities in the media, so when he is you know i'm you know watching streaming.

Nadine Vogel: TV watching movies he's not.

Nadine Vogel: You know, so I went hand i'm like wow and the other hand, and like. Ugh.

Nadine Vogel: It just reinforces what we have to do.

NORMA STANLEY: Yeah.

Nadine Vogel: So with that I just want it well, first of all I want to say thank you. You are an amazing co-host. 

Nadine Vogel: I love doing this with you.

NORMA STANLEY: Yeah i'm having a great time too.

Nadine Vogel: This is, this is just.

Nadine Vogel: terrific and and you know I certainly want to wish our guests our viewers or listeners a fabulous fabulous holiday season of health and wealth and happiness and going into having the most amazing 2022.

Nadine Vogel: Absolutely absolutely.

Nadine Vogel: And I certainly hope that this podcast can contribute to that at least in a small way.

Nadine Vogel: Right. To people so um I also want to say happy and healthy holidays New Year to you and to Sierra.

NORMA STANLEY: Thank you, same to you.

Nadine Vogel: I just I can't believe it's December oh my.

NORMA STANLEY: I know.  The year slipped by.

Nadine Vogel: I know and and to our audience, we will be back live on January Thursday January 20.

Nadine Vogel: And we look forward for you to rejoin us please tell your friends tell your colleagues tell everyone, you know, this is an important topic.

NORMA STANLEY: Yes.  

Nadine Vogel:  Like like Norma I always say at the beginning it's not just a podcast it's a movement.

NORMA STANLEY: Yes.

Nadine Vogel: And we need you all of you to help us move this along and grow.

NORMA STANLEY: Absolutely and it's going to grow with with you or without you.

Nadine Vogel: Hopefully with you.

NORMA STANLEY: Yes. Hopefully with you.

[laughter.]

Nadine Vogel: So with that Happy healthy New Year everybody norma I love you.

NORMA STANLEY: Yes.

Nadine Vogel: I can't wait to see on.

Nadine Vogel: January 20.

NORMA STANLEY: Yes.

NORMA STANLEY: And look forward to it.

Nadine Vogel: We'll talk then bye bye everybody.

NORMA STANLEY: Have a blessed holiday bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of the podcast. Make sure to tune in on Thursday, January 20th when we kick-off Season 2 of Disabled Lives Matter. You know it's not just a podcast, it's a movement.  So with that to all our listeners.  Happy Holidays. Happy New Year. May it be filled with love, joy and blessings. See you next year.

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S1-Ep38_Teresa_Beard

S1-Ep38_Teresa_Beard

November 19, 2021

Season 1, Episode 38
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Teresa Beard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: All right, well welcome everyone, this is needing vogel your co host of disabled lives matter, as you know, it's more than a podcast it's a movement and what helps that movement is my fabulous co host norma Stanley.

NORMA STANLEY: Hello everybody.

Nadine Vogel: So norma I don't know about you, but our guest today, I first of all let me just say Teresa beard she is a writer a podcaster and a consultant from Western New York, but norma when you heard about the podcast.

Nadine Vogel: And the title of it.

Nadine Vogel: I don't know what your reaction was my was, and this, this is some cool sh--t.

NORMA STANLEY: Okay, okay.  Well that sounded very cool to me too.

Nadine Vogel: yeah so um now that we've gotten everyone to wonder well what is the name of her podcast it is sh--t that scares me.

Nadine Vogel: Some people that alone is going to be scary so welcome to teresa how are you.

Teresa Beard: I am so great Thank you so much for letting me be here, this is exciting.

Nadine Vogel: Absolutely so well you know, obviously that's the elephant in the room, so let's start with.

Nadine Vogel: What the podcast is about, and why you called it, that.

Teresa Beard: Well, so the podcast is literally about sh--t that scares me um I have been a lifelong.

Teresa Beard: fan, how you know how to fascination with things like the paranormal super supernatural like I can remember, being in first and second grade and being like obsessed with Halloween and wanting to learn about ghosts and all that good stuff so.

Teresa Beard: That has carried me through my entire life i'm you know I just turned 39 so uh.

Teresa Beard: I when I thought about starting a podcast and also because.

Teresa Beard: paranormal and supernatural podcasts are the ones that I listened to the most I started thinking about like.

Teresa Beard: All the stories that you hear on paranormal and supernatural pa podcasts and even true crime and they're all kind of the same, which you know is great, because I only have to have listen to them when i'm listening, I can multitask, but I also is kind of like well.

Teresa Beard: it's a big wide world and there's so much other scary stuff in the world, and not just like oh it's a ghost and no it's an alien but like how about.

Teresa Beard: The fact that you can go to work one day or go to school, one day, and not come home or.

Teresa Beard: You know, existing in the world as a disabled person is terrifying.

Teresa Beard: So there's all these other things, and you know how do you incorporate all of these scary things into one sort of neat package and it just became sh--t that scares me.

Nadine Vogel: So we. used to have someone at.

Nadine Vogel: springboard who used to you know, when there was a lot of crazy work, you would say you know, is the scary pile right.

Teresa Beard: yeah.

Nadine Vogel: And I think that this is something bigger now you know you mentioned that you know living in a world as someone with a disability is scarier certainly can be scary so tell us a little bit about that, and your disability.

Teresa Beard: Oh wow um so I was born with a disability, I have a birth defect called.

Teresa Beard: chiari malformation and there's a bunch of different types, I have one of the less severe types.

Teresa Beard: This is the same birth defect that causes like spina bifida if you guys know what that is um.

Teresa Beard: You know little kids being born with holes in their spines is is a more severe form of this but, like you know growing up, I wasn't actually diagnosed until I was 16 or 17 

Nadine Vogel: oh wow.

Teresa Beard:  um which is you know pretty common for this birth fact and.

Teresa Beard: My mom found out that she also has it when I was diagnosed she was in her early 40s at the time, so you know I spent the formative years of my life like.

Teresa Beard: Having these horrible migraines and falling down all the time, and all these other things that like nobody knew why so they just kind of like ignored it.

Teresa Beard: And that.

Teresa Beard: was like my I never thought of being a person who's disabled, so it was never.

Teresa Beard: I just had to find ways to exist in a world that like.

Teresa Beard: wasn't here for my particular like i'm also very short i'm four foot 11.

Teresa Beard: I haven't grown I joke, since the seventh grade so like that is part of my disability too so.

Teresa Beard: i've always existed in a world that was not meant for people like me.

Nadine Vogel: mm hmm.

Teresa Beard: And that.

Teresa Beard: has been.

Teresa Beard: I mean.

Teresa Beard: I don't know any different so it's not like I had to learn to to get along like that, but when I really think about all the things that I have to do to compensate to like work a real job and and have all the go to school and.

Teresa Beard: it's sort of staggering to me what I what I always accepted as normal that other people didn't have to deal with so.

Teresa Beard: But in addition to like this birth defect, I have it causes all these other things like chronic pain and chronic migraines and all these things that can be really debilitating.

Teresa Beard: That you know you have to fight with doctors to get them to listen to you and.

Teresa Beard: You know it's very easy for them once they find out that I have chiari for them to just blow everything else off as oh it's it's just another symptom of this illness that you've had so you're born so. yeah.

Nadine Vogel: so what would you say you wish, you know what do you want people to understand the most about.

Nadine Vogel: I would say your disability and in your disability, you know is very much invisible right unless and until it becomes visible right, so what would you say that you wish people understood about invisible disabilities, probably in general and then your specific illness. 

Teresa Beard: um. Just because I don't look sick doesn't mean i'm not, which is, I think, really common among people with invisible disabilities like but also just because i'm okay in this moment doesn't mean that an hour from now I won't be flat on my back with a migraine.

Teresa Beard: Or that.

Teresa Beard: Tomorrow i'll still be okay.

Teresa Beard: that's a big one, because.

Teresa Beard: Even our current very broken disability system struggles with that.

Teresa Beard: Because it's like I am today very functional and very capable of like working a full time job, and you know going grocery shopping and all these other things, but.

Teresa Beard: Tomorrow, a week from now, a month from now, I might not be so i'm not you know right now clinically disabled, but I also not fully functional so that's The thing that I.

Teresa Beard: want people to understand more than they currently do and it's not just like people with my illness my best friend has an illness called charcot marie tooth.

Nadine Vogel: mm hmm.

Teresa Beard: And she actually works for the national organization for cmt now and same thing if she didn't work for the nonprofit for her disability.

Teresa Beard: She would have to fight every single day to get people to take her seriously as being disabled so.

Nadine Vogel: And I think you're right those things are scary. right.

Teresa Beard: yeah.

Nadine Vogel: they're scary to hear about.

Nadine Vogel: Very scary to live with which I guess goes back to your purpose for starting the podcast like you said it's not all about ghosts and goblins right it's about real life, I mean norma you know you and I have talked about you know, having adult daughters with disabilities, you know.

NORMA STANLEY: Yep.

Nadine Vogel: We get scared to death on a lot of things.

NORMA STANLEY: So many things.

Nadine Vogel: There's some scary crap out there for us too.

Teresa Beard: yeah and I think I mean my mom too like if she didn't have the same types of disabilities, that I do um she would just be beside herself with panic like constantly but.

Nadine Vogel. yes.

Teresa Beard:  You know, but because she has that Frame of Reference she's a little more chilled out about it, I think.

Nadine Vogel: So I'm curious and in you know, norma, you and I talk often about this balance and the balance, they always say it's not work life balance is integration.

Nadine Vogel: right but i'm curious for you Teresa as as someone with this disability that one day it is, and when they it's not kind of thing, how do you juggle job and life and projects and and not knowing what tomorrow, may be, how do you balance all of that.

Teresa Beard: um it's really freaking difficult.

Teresa Beard: Until about six months ago I worked like a standard full time job I worked for a dating APP I was extremely lucky because that job had always been remote um I started there in 2015 and was remote the whole time so.

Teresa Beard: At the time that I got that job I was just starting to figure out that I need to prioritize where my energy is spent.

Teresa Beard: And the way that I put it is like.

Teresa Beard: I start out every day with like a half tank of gas or less so I need to prioritize where that gas where that fuel goes.

Nadine Vogel:  Got it.

Teresa Beard: And, if I can cut out things like even excuse me like driving to a job, a commute takes that emotional physical fuel for me i'm getting ready in the morning, there were days when I was like I can either shower or I can start work on time.

Nadine Vogel:  Right, right.

Teresa Beard: Things that you can't really do when you have a traditional job so now.

Teresa Beard: That job got to be too much for me, because it was very demanding and very stressful and so now, I still have to prioritize where my energy goes but i'm working for myself, so that gives me a lot more flexibility.

Teresa Beard: Luckily, I have the kinds of skills that lend themselves to being self employed.

Teresa Beard: With a you know modicum of discipline that I learned from working remotely.

Teresa Beard: I can't say that I have much but.

Teresa Beard: um but also I.

Teresa Beard: out of necessity, I get groceries delivered and I.

Teresa Beard: have somebody come in and clean my house a couple times a month to do the deep clean, because if i'm spending my energy on a grocery trip or you know washing my baseboards.

Teresa Beard: i'm going to do nothing else that day 

Nadine Vogel:  Right, right.

Teresa Beard: So that's I that's been my biggest challenge to is.

Teresa Beard: relearning how to prioritize my energy.

Teresa Beard: Not just my time.

Nadine Vogel: yep well you know what's interesting about this, because I was going to ask a question Norma I often talk about like you know self care.

Nadine Vogel: Right and how to practice self care.

Nadine Vogel: And you know, certainly someone adults with disabilities folks experiencing mental health related issues.

Nadine Vogel: that's a big deal right for special needs parents like norma you know sierra is in a wheelchair, and you know sierra's amazing but The thing is, is that she relies on you right to take care of her.

NORMA STANLEY:  Totally.

Nadine Vogel: So there's this issue of self care and what I what I love hearing about what you're saying Teresa is that it's really taking a step back and understanding yourself.

Teresa Beard:  Yes.

Nadine Vogel: And accepting and embracing who you are like you said, your energy level what you can do instead of fighting it.

Nadine Vogel: and saying, I know I you know I start with half a tank but i'm just going to work as if I had a full tank, no matter what right that that's not self care so.

Nadine Vogel: It sounds to me like the way you've been successful and certainly you are successful and balance everything really has to do with your acknowledgement of how you're feeling and your self care, I could gather.

Teresa Beard: Yes 100% and it has taken so long to get to the point where i'm not like being super harsh on myself for not being able to do the same things that quote unquote normal people can do like.

Teresa Beard: I have a fiance who is amazing and wonderful, but able bodied and doesn't have health problems and whatever so I.

Teresa Beard: Even up until like four or five years ago would browbeat myself into Okay, well, I have to go to the grocery store, I have to do this.  I have to do this.

Nadine Vogel:  right.

Teresa Beard: Instead of acknowledging that my time and energy is more valuable.

Teresa Beard: Like literally and monetary more.

Teresa Beard: Valuable than being put elsewhere.

Nadine Vogel: what's your worth.

Teresa Beard: Exactly and like you know spending the extra 10 or 15 bucks to get my groceries delivered because it's really ultimately all it costs, I'm over going to the grocery store.

Nadine Vogel: I hate grocery shopping.

Nadine Vogel: Can we just say I hate grocery shopping.

Teresa Beard: I like going to the grocery store when I don't need to.

Nadine Vogel: Okay, okay.

Teresa Beard:  I love when I get to walk around.

Nadine Vogel: Like walking around with a list.

Teresa Beard: yeah yeah if I only need to like do my weekly trip.

Nadine Vogel:  Yeah.

Teresa Beard: because it's not just wandering around the store it's like getting this stuff to my car.

Teresa Beard: Unloading it when I get home, so I can.

Teresa Beard: it's worth that extra 10 or 15 bucks to me like.

NORMA STANLEY: I'm going to do the same thing I became sick, as a result of taking my daughter's wheelchair in and out of the car for 30 years and so i'm in the process of. and I. 

NORMA STANLEY: love to go shopping I love grocery shopping I love to cook and um, but I have come to the decision that I have to do the same thing I have to step back and say is a better way that I can get the same result and not put too much wear and tear on myself, because I am getting older, you know.

Nadine Vogel: Oh but you're getting better. norma

Teresa Beard: Like a fine wine Why and cheese.

Nadine Vogel: That's right exactly exactly well on that pleasant note.

Teresa Beard: acknowledging our limitations, is what it's about.

Nadine Vogel: Well, acknowledging that side to note wine cheese and really like you know thinking for dinner now.

Nadine Vogel: let's take it let's go to commercial break and then we will come back with Teresa Teresa I I have so many more questions and I asked you i'm having so much fun talking with you so everybody stay with us don't leave we'll be back in just a minute.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: all right Hello everyone and welcome back to the second half of today's episode of disabled lives matter.

Nadine Vogel: norma stanley and I are having this fun conversation with Theresa beard who hosts a podcast sh--t that scares me, and you know what I totally get it now.

Nadine Vogel: Before this We weren't sure, but totally get it now so Teresa before we before we broke um you were talking about you know self care and how you juggle and manage and it's being true to yourself, but you also did say something I picked up on that it kind of took you a long time to get there.

Teresa Beard: Oh yeah.

Nadine Vogel: Right, so what advice would you give your younger self whether it's about medi you know battling some of the medical issues finding treatments or just you know honoring your time and energy for yourself, for your fiance What would you tell her.

Teresa Beard: uh honestly.

Teresa Beard: Therapy, go to therapy.

Teresa Beard: Because I part and parcel of my birth defect is mental illness primarily anxiety and depression and research is fuzzy on whether.

Teresa Beard: You have mental illness, because you have chiari or, if you have mental illness, because, like people with disabilities generally have higher rates of mental illness.

Nadine Vogel: Right 

Teresa Beard: um.

Teresa Beard: But for so decades of my life I fought and fought and fought I can do it myself I don't need therapy, I really bought into so much of the stigma that surrounds mental illness and mental health treatment and.

Teresa Beard: I was so much worse off for it, if I had.

Teresa Beard: You know started therapy at 17-18 years old, when I really started struggling I could have saved myself so much trouble and like just Teresa go to therapy it's fine.

Teresa Beard: you'll feel so much better afterwards.

Nadine Vogel: yeah no, I think, and I think people are, I think people are afraid of therapy, I think you know they feel like they're giving up you know there's all kinds of stigma.

Nadine Vogel: associated with mental illness and then you add will go to therapy or support groups and suddenly the stigma goes even further.

Teresa Beard: Yeah.

Nadine Vogel: Which is, which is a shame, because, like you said that that's what's helped.

Nadine Vogel: yeah and we know that that helps so many people, so if you meet someone new.

Nadine Vogel: we're not let's say on the scary sh--t podcast and we're not on the disabled lives matter podcasts but you know you're with friends, you know you're out, you meet someone do you talk about disability and, if so, in what scenario, or how do you talk about it.

Teresa Beard: And it kind of depends like i'm very open about it but.

Teresa Beard: Not like oh hi it's nice to meet you I also have a disability, I also you know i'm in therapy and take take medications but like.

Nadine Vogel: [Laughter]

Teresa Beard: Like honestly.

Teresa Beard: I did.

Teresa Beard: Once go on a first date and uh the guy was amazing I was super into him and I was just sort of starting my therapy journey, and you know I, for some reason, decided to lay it all out on the table for this dude.

Nadine Vogel: [Laughter]

Teresa Beard: we're still together for a year, so.

Nadine Vogel: What.

Teresa Beard: Well maybe you know.

Nadine Vogel: it wasn't that scary for him so okay.

Teresa Beard: that's no way.

Teresa Beard: He I was like yeah I you know i'm on medication and therapy whatever he goes oh cool meet too and with.

[Laughter]

Teresa Beard: A whole thing.

Nadine Vogel: The new me too movement. 

Teresa Beard:  Right yeah yeah and like.

Nadine Vogel: The real life version.

Teresa Beard: The the transparency was really fantastic because, like first dates are so annoying i'm really glad that I haven't been on one in a really long time, but like.

Teresa Beard: I don't ever want people to feel like they're meeting my PR representative so with anybody at this point, you know if it comes up I talked about it.

Teresa Beard: You know it's it's, a thing that I am.

Teresa Beard: Very over my shame of.

Nadine Vogel: Right, right.

Teresa Beard: That shame lasted way too long about my disability my mental health, the works so i'm very, very open about it now, but not.

Nadine Vogel: Well it's interesting too, because you know, like you said, your job was remote.

Nadine Vogel: So you weren't sitting in an office in a location, with a lot of other people and Norma I you know we talked to folks all the time that work in corporations or.

Nadine Vogel: or in a retail environment and they're surrounded by people and they go through this issue of.

Nadine Vogel: Do I disclose do I not disclose what do I say, is it hurtful is it helpful and that alone creates all kinds of anxiety. 

Teresa Beard:  Yeah.

Nadine Vogel: If you will, right and it just in my opinion, just takes it to a whole nother level so.

Teresa Beard:  Yeah.

Nadine Vogel: I just.

Nadine Vogel: I love how you've just come to terms but not come to terms in terms of a why me come to terms with this just who I am i'm still going to be the best and successful and do all these crazy wild things it's just who I am.

Teresa Beard: yeah.

Teresa Beard: Well, and it's funny that you mentioned work because I got insanely lucky with my.

Teresa Beard: Previous job, the people that I worked with my management, because we all.

Teresa Beard: We worked in an industry that is very niche and can be very stressful our primary responsibilities were like keeping people on our website safe.

Teresa Beard: From scammers.

Teresa Beard: or criminals or.

Teresa Beard: Some of the darker aspects of online dating.

Teresa Beard: And we joke that we're just a bunch of like introverted weirdos trying to do good in the world, and so there were a lot of people like me they were other disabled people.

Teresa Beard: There were.

Teresa Beard: people with mental health challenges people you know my manager for six years, almost has chronic fatigue and used to work in like high powered corporate jobs, he was a CEO and all the stuff that he got sick and ended up.

Teresa Beard: joining this company and working in his capacity that he could would CFS and it just I was so lucky to be surrounded by.

Teresa Beard: Other people with the same kinds of challenges.

Nadine Vogel:  Yeah.  

Teresa Beard: And I think that if I hadn't and if they hadn't been so open about it, it I would be in a very different place in my my journey now.

NORMA STANLEY: able to find your tribe.

Teresa Beard: Yes, and so so randomly because we had people on the west coast people in Texas my manager with CFS is in Canada, like all these people from all over the US and Canada coming together totally randomly like.

Teresa Beard: How my.

Teresa Beard: former director put together this team, I will never understand.

Teresa Beard: Because we just they were very much my tribe and very much still our other some of my closest friends, you know we don't talk every day anymore.

Nadine Vogel: That's great.

NORMA STANLEY:  It is 

Nadine Vogel: so if we continue on the scary.thing.

Nadine Vogel: what's the scariest thing ever happened to you.

Teresa Beard: Oh i'm.

Teresa Beard: crap.

Teresa Beard: Honestly uh some of the situations, I found myself in in my younger days when I was online dating.

Teresa Beard: were absolutely terrifying and I was like a series of very stupid decisions on my part that led to some very scary situations, which is part of why I was so passionate about the job that I then did later.

Teresa Beard: i'm trying to prevent those same situations from happening to other people um the scariest situations that i've ever been in in my life have always been with other humans and never with you know go Sir aliens do scare the crap out of me.

Teresa Beard: But i've never met one.

Nadine Vogel: You gotta see right here.  yeah.

Teresa Beard: I don't know what it is about aliens man that's, just like the we I think we all have our like paranormal thing that like we don't want to talk about because it's just scary.

Nadine Vogel: Right. right.

Teresa Beard: For me it's aliens.

Nadine Vogel: No, I hear you and you know it's It is interesting, because I do just my personal opinion, and this is it you know I get teased a lot about this, my husband, I had been together since we were 14 years old, when I talk about dating you know people like yeah, what do you know.

Nadine Vogel: yeah right I you know, but when I when I think about online dating and both my daughters.

Nadine Vogel: date from online it just that scares the bejesus out of.

NORMA STANLEY: you and me both.

Nadine Vogel: yeah and.

Nadine Vogel: Adding with my older daughter, in particular, her disability.

Nadine Vogel: It really scares the crap out of me.

Nadine Vogel: And you know it just It just seems to be the way everybody does it these days.

Teresa Beard: yeah and it's a it's an interesting thing because I was 18-19 years old at the real dawn of the whole online dating thing in the early 2000s.

Teresa Beard: And like that's how I have always met my partners and, like my now ex husband and all my significant relationships have been people that I met online.

Teresa Beard: And for me, I am also really good at sussing out who is.

Teresa Beard: not great.

Teresa Beard: From like photos and.

Teresa Beard: essays and stuff like.

Teresa Beard: Especially now, after being you know elbows deep.

Teresa Beard: In that world for six years, but to me it was always like online shopping like you can go on Amazon and put in all these filters and.

Teresa Beard: You know these websites will spit out your options for who you can date that's I never got the same kind of sense about people that I met in real life that I did with people that I met on the internet.

Nadine Vogel: interesting.

NORMA STANLEY: i'll probably have to get some some tips from you about how to date online.

NORMA STANLEY: You know i'm just one of those people that if I had to go online, I may never date again in life.

NORMA STANLEY: Just can't I can't see it I can't see it but.

Teresa Beard: it's it's like I mean like i've been you know people have tried to pick me up in bars and whatever has happened to everybody, but like.

Teresa Beard: It like that was always the thing that I found so unbelievably sketchy like the thing that always freaked me out the most was like you'd walk into a public place and some dude would be.

Teresa Beard: up on you like wanting to.

Teresa Beard: get your number and i'm like who are you i'm trying to have a drink with my friend, can you please leave like.

Nadine Vogel: Right I know, I just it's true it's true again I wasn't in that world, so yeah okay.  

Teresa Beard:  yeah.

Nadine Vogel: It still scares the bejesus out of me.

Teresa Beard: It scares my mom too like you know, especially before I started working in online dating my mom would be like, are you out of your mind you met someone on the internet.

Nadine Vogel: Right, right.

Nadine Vogel: Well, I have my girls put on what is it it's like the find my phone says, I like I can see where they are and know where they are it's not now like creepy like i'm not following around all the time, but if they go out like I just kind of want to know some stuff.

Teresa Beard:  Yeah.

Nadine Vogel: So I can you know if anything happens, but anyway, I you know this has been amazing amazing interview I am just in love with you this.

Nadine Vogel: I could talk to you all day, unfortunately, we are out of time, so one last question, I would love to ask and norma you may have one as well, I would just like to know what do you consider your superpower, because I think you have a lot, but I want to hear what you think.

Teresa Beard: What my current superpower is.

Teresa Beard: is I think i'm easy to talk to people find me very easy to talk to, and like all.

Teresa Beard: That yeah all facets of my life so.

Nadine Vogel: Okay norma I think that's definitely a superpower of her yeah.

NORMA STANLEY: yeah definitely definitely I would ask you question, it would be on online dating and what was the one tip that you would give someone who has never done it and may want to do it.

Teresa Beard: Be vigilant.

Teresa Beard: And if you get a feeling that something is not right, it probably isn't do not ignore it, listen to your intuition.

Teresa Beard: If if if somebody is telling you one thing one day and something else the next day there's a problem RUN don't listen ferrexpo nation just run.

Nadine Vogel: This run and if you, and if you if you use a wheelchair. Wheel really fast.

Teresa Beard: Yes, really quickly.

Nadine Vogel: Well, on that note, I just want to say.

Nadine Vogel: Thank you once again Teresa This is just lovely speaking with you.

Teresa Beard: Yes, you too Thank you so much for having me.

Nadine Vogel: And I you know I know that our listeners enjoyed this today, and although the name of your podcast once again for people to listen is sh--t that scares me, I think that you do anything but scare people.

Nadine Vogel: Just fabulous to thank you and for our listeners, this was another episode of disabled lives matter more than a podcast it's a movement norma.

Nadine Vogel: Thank you dear.

NORMA STANLEY: We thank you, you are lovely all the wonderful guests we keep getting so stay tuned we have a lot more coming.

Nadine Vogel: Absolutely take care, everybody bye bye.

Teresa Beard:  Bye.

NORMA STANLEY: God bless.

 

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S1-Ep37_Sue_Strand

S1-Ep37_Sue_Strand

November 11, 2021

Season 1, Episode 37
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Sue Strand

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: hello, and welcome everyone to another wonderful episode of disabled lives matter I am nadine vogel your one of your co host with my other Co host norma.

NORMA STANLEY: Hello everyone.

Nadine Vogel: So norma and I, you know we talk all the time about this is not just a podcast, this is a movement.

Nadine Vogel: And you our listeners are helping us to make it a movement and bring it to.

Nadine Vogel: Not just people with disabilities, but people that don't have disabilities, because that's going to help them understand our world right and understand that people's lives, including the lives of people with disabilities do matter.

Nadine Vogel: And so today's guest, I think, is going to illustrate this point and probably better than anyone sue strand.  hello sue.

Sue Strand: Well hello everybody.

Sue Strand: Nadine and norma and everyone out there.

Sue Strand: who happens to be listening.

Nadine Vogel: So I want you to tell us to start off by telling us a little bit about yourself and the background and about disabled bikers what it is why you started it things like that.

Sue Strand: Well, a little bit about me.

Sue Strand: I have.

Sue Strand: my brother is the one that started this.

Nadine Vogel: And he passed away in.

Sue Strand: 2012.

Nadine Vogel: I'm sorry.

Sue Strand: And he left the company to me, and I am not a motorcycle rider, but I do understand this disability.

NORMA STANLEY: Side thing.

Sue Strand: His wife and him got into a motorcycle accident back in the late 70s, I believe it was, and she broke her back, and so my brother who built motorcycles, then.

Sue Strand: Developed how to be able to ride as a person, that is paralyzed from the waist down so he built her up a trike and then put in the wheelchair carrier so carrier so that she could join them in their rides, because that was something they were very, very passionate about.

Sue Strand: So he kind of developed.

Sue Strand: Things to work for people with disabilities, he was an amazing motorcycle builder he built motorcycles for the CEO of St jude's hospital and his wife.

Sue Strand: Yes, he was very, very good and along the lines of this he helped people that were disabled get back on the bike again.

Sue Strand: When he passed away I picked up and wanted his dream to carry on I didn't want that to die.

Sue Strand: So I have gotten in touch over the years, with many people who have products that help disabled people ride again whether they're a paraplegic.

Sue Strand: or they're just an amputee or they just have nerve problems or what getting older, getting up there, you know that kind of thing and that's basically, what I do, I like to help people find the resources to get back on the bikes awesome.

Nadine Vogel: that's just amazing I you know i've learned through my husband, in particular, that.

Nadine Vogel: When someone rides a motorcycle they are committed like they are all in right it's a lifestyle, especially you.

Sue Strand: know.

Nadine Vogel: A certain brands right like indian and Harley whatever.

Sue Strand: So.

Nadine Vogel: i've also learned that when someone becomes disabled not born disabled but but has an accident like your sister in law, did you know it's it's very difficult for them to imagine doing things that they did prior to the accident, even just basic things.

Nadine Vogel: So talk to me about you know someone becomes disabled has an accent, how do they even get their head around but they could potentially ride a motorcycle again.

Sue Strand: that's the whole it's most of what we do and what we have are for people that had never thought that they could do it again and they come upon us by accident.

Sue Strand: Ah, when they go oh my gosh you know and there's some there are some programs out there, that will help disabled people right again, for instance, if you were a vet and were injured and.

Sue Strand: In the line of duty, the vets got, had they have a program that they will pay to get you back on the bike again they will buy.

Sue Strand: upgrades every two years to put on your motorcycle and so forth, so that's one good thing and an insurance company if you're injured.

Sue Strand: In an can no longer keep your lifestyle, the way that you were doing it before your insurance will cover this and they will pay for you to get back on your bike again and the upgrades and the modifications, most people don't know that.

Sue Strand: i'm shocked.

Sue Strand: Well, they need to I mean they're they're paying for you to recover your lifestyle as close as possible, so there are programs out there and there's a lot of people who do poker runs and they dofundraisers if you're with a group of other bikers, they can put something like this together.

Sue Strand: They can make a motorcycle that was two wheels make it a trike with the trike kit and the dual brakes is up on the handlebars so you can run the front and the back breaks in one one motion.

Sue Strand: There are thumb throttles there are automatic clutches there's virtually so many different ways that we can get you back on the bike if you can still.

Sue Strand: ride a two wheel, but you just have trouble holding it up there's what's called kickstand that actually lowers down when you start to slow down and it comes up.

Sue Strand: onto the bike to keep it up right so that will help you get back on the bike that way too so there's so many different programs, and in fact I kind of forgot the question the you asked.

Nadine Vogel: I don't you know I need to because i'm so i'm so into listening to this i'm like.

Nadine Vogel: wow, so this is Marianne of products that I had no idea that exists 

Sue Strand: Yes.

Nadine Vogel: That can adapt right So how do you where do these products come from are the are the brand the big motorcycle brands, you know embracing this, or is this just individuals, how do you get those parts let's start with that.

Sue Strand: The majority are individuals who have developed something either for themselves or saw the need and feel the need.

Sue Strand: larger companies like Harley they have reverse kits that are on the new bikes and stuff that will help somebody but they really don't have any products other than that and that's the whole thing so many people are. Um

Sue Strand: Not.

Sue Strand: knowing anything about this industry you look at all the motorcycle dealers, you have someone that comes in the door, and they have.

Sue Strand: A possibly a limp or they're having difficulty or they're an amputee or whatever, this is going to increase those dealerships.

Sue Strand: Sales because they can modify  the bike if it's put on by a Harley dealership or a Honda dealership it does not void the warranty.

Sue Strand: So it's be included if it's put on by one of those professionals and most of the places out there don't if they just they don't know anything about it we've tried to reach out to them and, for some reason we're not getting the kind of response, but this would help everyone.

Sue Strand: Just so easy.

Nadine Vogel: Well, so oh gosh I have so many different things i'm thinking right so. there is

Nadine Vogel: NMEDA, which is the national mobility equipment dealers Association for cars way for automobiles to adapt them and have them.

Nadine Vogel: Adapting sort of in a certified way, so we know they're safe, etc, so what i'm hearing is there really isn't an equivalent of that for motorcycles at this point.

Sue Strand: Not that i've ever heard of.

Nadine Vogel: So your role, then, is in this process is really important process is what.

Sue Strand: I like to.

Sue Strand: I like to educate and try and reach out to the individuals to get ahold of if they're buying a motorcycle what we can do for them, or if they're looking for a motorcycle what we can adapt for them the modifications so it's basically not we individually, but.

Sue Strand: All of the the bike builders that are out there, the fabricators somebody that's within their area, there are certain things that we have on our website that actually.

Sue Strand: can be followed by someone, and so it doesn't cost them anything from us they're just some ideas and plans that they can use. Unfortunately this particular industry is very expensive.

Sue Strand: And that's The sad thing about it when we try and reach out to someone to make something.

Sue Strand: For us, that could be done on a regular basis, nine times out of 10 the ball gets dropped they don't go forward with it, so we have to buy what we can we have so many more ideas of what can be done if somebody is interested out there, they could make these things for customers and.

Sue Strand: and help to you know share it off with instructions, so the bike doesn't have to actually be there.

Nadine Vogel: So you have a so so disabled bikers has a collective, I guess, I would say, of individuals that can do the adaptations around the country, it sounds like.

Nadine Vogel: And then, as a result of that if people here of you have like through this podcast they will contact you and you put you kind of other connectors you put them together or help them understand how this is possible.

Sue Strand: Basically yeah but the honest thing is, we don't have a lot of people that we work with that are mechanics and so forth, if most of the motorcycle people out there have a mechanic that they go to anyway.

Sue Strand: They have someone.

Sue Strand: That they work with that person can contact us and we can tell them okay we've got this this and then since bike builder or fabricator or something they figure it out.

Sue Strand: And then they can help the customer with that we do have a few people, but not on a large scale it's mainly using your person that you already go to.

Sue Strand: or someone in your area that you can start going to that we can help with and anyone that's a custom builder should be able to figure it out pretty easily actually so.

Nadine Vogel: This is this is this is amazing to me norma I i'm just like you know i'm thinking about this and.

Nadine Vogel: If you're in general about motorcycles and then you think about this live here in general about motorcycles whoa how amazing.

NORMA STANLEY: Very cool I mean it makes me think maybe i'll get on one of those adaptable ones.

Nadine Vogel: [laughter.]

NORMA STANLEY: Me and Sierra. Do they make them for two.

Nadine Vogel: You never know.

Sue Strand: I tell you i'm with you i'm not a rider, and when I used to write on the back of my brothers, I was a little nervous, whereas.

Sue Strand: He was very cautious and very careful and there would be no need to be nervous, but when you think about all of the people out there that.

Sue Strand: don't consider a motorcycle when they're turning lanes when they're turning into something, and all of a sudden, they get hit.

Sue Strand: And then they're either dead or disabled or not, the same way that they used to be and their their bike is mangles or whatever it might be.

Sue Strand: But like I was saying, if it wasn't an accident that you're getting that cause you become disabled your insurance company or their insurance company, whoever paid for your medical bills has to pay for you to get back on your bike.

Sue Strand: And they have to pay for a bike and so forth, and so you can't just let these people go.

Sue Strand: Hold them to it, because they can they can take modifications and pay for it on a new bike and you can be back on the road again that's one thing about motorcycle riders they're just they.

Sue Strand: Being able to ride the motorcycle is everything to them, and when you take that away from them, they slowly basically just kind of sink into the distance.

Sue Strand: If they have the opportunity.

Sue Strand: Okay yeah i'm going to get a bike it's going to have a dual handbrake you'll have an auto clutch everything will be on the handlebars.

Sue Strand: or whatever it might be, we can switch around left side right side if something's not working well on their body and get them back in the wind that's amazing.

Nadine Vogel: that's something that I mean that's important on so many levels, but you know, like myself, I couldn't even imagine that this was possible, so we do need to go to commercial break as soon as we come back, though I do want to ask you about the disabled bikers initiative.

Nadine Vogel: and love to hear a love to have our listeners hear more about that so give us just one minute stay tuned everybody don't leave we'll be right back.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: Hello everybody welcome back to today's episode of disabled lives matter Norma I today are talking with Sue strand owner of disabled bikers, first of all i'm i'm shocked at what can be done i'm shocked it if the what i've learned is how easy This can be done and.

Nadine Vogel: Without a lot of money right that insurance companies will actually help fund this so that if you are a rider or you were a rider before your accident, you can be a rider today.

Nadine Vogel: And Sue Sue you know we were talking before about how do we turn this into really an initiative that we can get the big biking brands arms and legs around, and I was, I was shocked to hear what you share with us so, can you share with our listeners how you've tried to do this.

Sue Strand: Absolutely within the past 10 years i've actually tried to contact every single Harley dealership by email and or phone in the United States, I have a full list of them, as well as in Canada and basically nothing no response they're not i'm not asking them to buy products.

Sue Strand: i'm just trying to.

Sue Strand: get them aware that if they have someone who is disabled or having just has you know little issues and stuff like that that they can ride again.

Sue Strand: And, and to be able to say to a person that walks into the dealership I know exactly where we can go, so you can get back on a bike.

Sue Strand: But no, no response, however, there has been customers who go into some Harley dealerships, for instance, and they say hey i've heard about this, can you get ahold of this company and see if you know you can get me on the win on the bike again, and they have called me.

Sue Strand: But for them to just have the information to the parts in the sales department or wherever it might be have someone and just say hey I know of a company that can help you with this and we can put it on your bike i'm not asking them to send it somewhere else i'm trying to make them. know that they can have an answer for this person.

NORMA STANLEY: But you're driving traffic to them.

NORMA STANLEY: that's interesting.

Sue Strand: yeah yeah.

Nadine Vogel: Do you think so, do you think it's an issue of they're worried about liability that if they do it, and they do it wrong that the person, you know will get hurt further I mean I don't know i'm just. speculating.

Sue Strand: Well you know.

Sue Strand: Even a brand new bike if a person doesn't know how to ride, it can get hurt as soon as they leave the parking lot, you know that. that's just a

Sue Strand: Possibility this as long as it's put on if you're bike's under warranty as long as it's put on by a Harley dealership if you've got a Harley bike a Honda dealership so forth, and so on, they put it on it's included in the warranty you don't lose anything and.

Sue Strand: it's.

Sue Strand: it's no different a modification of this is no different than putting in a handicap ramp or a handicap.

Sue Strand: bathroom it's something that should be allowed to every dealership So if you walk in and you say hey I heard about this disabled bikers place an, and I know that they have.

Sue Strand: Left sided foot controls.

Nadine Vogel: or right side.

Sue Strand: You know, whatever it might be, can you reach out to them that's perfectly fine we even helped them get a discount to.

Sue Strand: To people, we also offer a veterans discount personally and we offer anyone who belongs to motorcycle association a discount as well, so just trying to get them unfortunately most parts are very expensive.

Sue Strand: yeah and a lot of these people don't have the money for it.

Nadine Vogel: Well norma, I think you and I need to noodle on this and.

NORMA STANLEY: yeah.

Nadine Vogel: Just feel it, you know I don't know if if they're afraid of how it's going to associate with the brand I you know, I would just love to I would love to have a conversation with someone.

NORMA STANLEY: I agree.

NORMA STANLEY: And again, people have to understand that you know we're all just one incident away from being absolutely part of this Community so many opportunities for them to.

NORMA STANLEY: a leveraged by reaching out to not only the people who may need.

NORMA STANLEY: That for a family network and friends, I mean they would love that.

Nadine Vogel: But i'm wondering i'm wondering if it's not like a brand issue right.

Nadine Vogel: They don't want to have their brand associated with.

Nadine Vogel: You know you're going to get you're going to fall you're going to get disabled on your bike and ever blah blah blah right so i'm just wondering if they're trying to just be quiet about it, but having said that.

Nadine Vogel: That you know, promoting it is different than at least taking the information and saying hey we're a resource, if something happens so that's that little different, but.

NORMA STANLEY: At least be be amenable to the idea.

Nadine Vogel: is absolute just like I said, like NMEDA right.

Nadine Vogel: for cars, I mean everybody knows at some. point. they'll have an accident.

Nadine Vogel: or whatever so that's just troubling on so many levels so.

Sue Strand: It is, I've been bashing my head against the wall for 10 years trying to get them to to notice.

Nadine Vogel: I was going to say.

Nadine Vogel: No go ahead, go ahed.

Sue Strand: Well, I was just going to say we contacted Harley and they were very interested, but they wanted us to send a.

Sue Strand: will have to make at least 100,000 in one year to be considered to be somebody that they would send out to their people so.

Sue Strand: With That said, you know there's no way we can show that we make a hundred thousand dollars a year.

Sue Strand: And so we stopped with that, but we contact the individual ones, and they can contact us they have put these parts on their customers motorcycle in their shops, they are the ones that have contacted us yes it's perfectly they're happy about it.

Nadine Vogel: Okay well we're gonna have to add this list.  there is more work to be done.

Sue Stand:  so okay.

Nadine Vogel: So, so you know well, first let's start it is folks out there, listening to this how do they get in touch with you let's start with that.

Sue Strand: Well it's disabled, just like the word says di a ab l E D dash bikers, with an s.com and then there's contact information they're.

Nadine Vogel: Disabled bikers COM.

Sue Strand: disabled dash bikers dot com 

Nadine Vogel: bikers days or disable dash bikers, yes.

Sue Strand: Thank you. So.

Nadine Vogel: You know, there was an article that that that I had seen that i'd read about what you were doing, I think the title was the road doesn't end here.

Nadine Vogel: And I love that right so thinking about this, the road doesn't end here, what do you see for the future, for the work you're doing for people with disabilities, relative to bikes, what do you see.

Sue Strand: Well we're just going to still hammer it out just try and we're there in case somebody contacts us we've tried so many different avenues but, honestly, I just want to keep my brother's dream alive that he was passionate about this and.

Sue Strand: So many people that i've spoken to a lot of them say oh my gosh I didn't know this even existed.

Sue Strand: wow you mean I can get back on my bike i've not been able to ride for 10 years you're kidding me right and it's just it's exciting so.

Sue Strand: i'll be here i'll be waiting for anyone who wants to contact us we've tried so many different ways and possibilities and it just people just are not opening up to it.

Nadine Vogel: And what about for someone who's never written before, but now they are disabled, and they would like to take up motorcycle riding as a disabled person How does that work.

Sue Strand: For the first and foremost, is to take some lessons, you need to learn how to ride a bike prop properly and in every state or every city, most of the This is very easy to do.

Sue Strand: If you that's your first and foremost, if they're disabled get a trike or buy a bike that you can afford or that you like.

Sue Strand: And then we'll get a trike kit so they take off the back wheel they put on a two wheels and and makes it into a three wheeled trike very simple if they need a wheelchair carrier, we have those.

Sue Strand: If they need the handle bars to be accessible only we can do that anything I mean, even if you're a very, very short person very short and you have trouble reaching the handlebars and the foot, yes, one there, there are ways of adapting to that as well.

Nadine Vogel: wow that's that's just amazing.

NORMA STANLEY:  That's awesome.

Nadine Vogel: And so my.

Nadine Vogel: last question, because we are running out of time is you are located in South Dakota I believe you have sturgis which is like you know is a large motorcycle event.

Sue Strand: yes.

Nadine Vogel: Do you see individuals with disabilities at sturgis riding there.

Sue Strand: my brother used to go to sturgis every single year, since he was like 17 years old, and he died when he was 56 I believe so, anyway, he.

Sue Strand: He had a booth there, and he would go there every year, and he would talk to people and get involved with other companies and show them So yes, there are a lot of people out there with disabilities, that that do ride and.

Sue Strand: Many of them that that don't just show up and they walk around you know so because they don't know.

Sue Strand: That they could ride again so yeah it's and especially age wise, as we get older many things are.

Sue Strand: Not as easy as they were before you know, and so they stopped riding because of that well we've got ways to work around that too, so you know, whatever it might be let us now we'll figure it out together we'll get in touch with you and talk about what you need.

Nadine Vogel: Is this amazing, I mean norma isn't this incredible.

NORMA STANLEY: This is so awesome and I just ask any media coverage about what you guys do because I think if more people knew that you existed in with the kind of work that you're doing.

NORMA STANLEY: I think you would get a lot more, you need the visibility that's that's going to be important, and I was just wondering had there been any you know major network.

Sue Stand: No.

NORMA STANLEY: So we have to do something.

Nadine Vogel: yeah yeah yeah you know on of the things I love about these  podcasts is that you know norma you and I, like we.

Nadine Vogel: We get the you know we get the pleasure and the honor of hearing about these amazing these amazing businesses and programs and thing yeah disabilities that even for us that work in this space didn't know about so.

NORMA STANLEY: yeah.

Nadine Vogel: This is terrific so Sue Thank you very much.

Nadine Vogel: Norma and I are going to noodle and figure out how to get you out there more and.

Nadine Vogel: For our listeners, we hope you enjoyed today's session, as much as we did hearing about this, if you have a disability, you know if someone that has a disability they love to ride they road before or they're just getting older and need some help.

Nadine Vogel: Please contact disabled dash bikers.com so wishing everyone a wonderful week and we'll look forward to seeing you on disabled lives matter for our next next version norma take care.

NORMA STANLEY: Thank you everybody.

Sue Strand:  Bye!  Thank you.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S1-Ep36_Yannick_Benjamin_and_George_Gallego

S1-Ep36_Yannick_Benjamin_and_George_Gallego

November 5, 2021

Season 1, Episode 36
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Yannick Benjamin and George Gallego

 

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Okay Hello everyone and welcome to this episode of disabled lives matter, yes, we are a podcast but more than that, we are a movement and this movement, I am joined by my co host the amazing Norma Stanley.

NORMA STANLEY: Hello everybody.

Nadine Vogel: Hello.

Nadine Vogel: I can't believe it's November.

Nadine Vogel: Does anybody else have that shock I I know it comes every year.

Nadine Vogel: Thanksgiving comes every year, but I don't know I always seem to be surprised by it.

NORMA STANLEY: Time's has flown by this year.

Nadine Vogel: Time is flying absolutely, so we are joined by two fabulous guests, today we have Yannick Benjamin and George Gallego, I would like to start with you Yannick, and I can tell us just a little bit about who you are what you do and why you do it.

Yannick Benjamin: yeah so thank you both for having me on it's such an honor very excited but a long story short, my whole background is in the hospitality industry i'm also born and raised in New York, both of my parents.

Nadine Vogel: Woo!

NORMA STANLEY:  Yay!

[Lots of laughter]

Norma Stanley:  We are New Yorkers too.

Yannick Benjamin: Yeah, good okay we're like the last of the Mohicans you know what I mean. yeah but I really you know, had a really great childhood, I think, overall, I mean I grew up on 47 street and 10th avenue you know right down the block from Times Square.

Yannick Benjamin: You know, and my parents were incredibly generous and really good honest, hard working people and I just kind of followed in their footsteps they were both in the hospitality industry.

Yannick Benjamin: And that's what I wanted to do from a very early age and basically.

Yannick Benjamin: I was able bodied working in restaurants loving every minute of it and in 2003 I was in a car accident that left me permanently paralyzed but really through the support.

Yannick Benjamin: Through the love through the just the motivation that I was surrounded by was able to continue to pursue.

Yannick Benjamin: That objective my dream of working in restaurants working in hospitality and and you know co founding a restaurant that I currently have.

Yannick Benjamin: With George Gallego, and so I would be I would I would be the biggest biggest liar to say I did this on my own, I was very blessed to be surrounded by so many great people.

Nadine Vogel: And, and the name of the restaurant is Contento. yes.

Yannick Benjamin: Contento. exactly correct.

Nadine Vogel: In East Harlem I think right.

Yannick Benjamin: that's right 88 East 111 street between Park and Madison.

NORMA STANLEY: that's where I used to live.

Nadine Vogel: To all our listening listeners, this is where you guys need to go right.

NORMA STANLEY:  Awesome.

Nadine Vogel: This is where you need to do and you're also the Co founder I think of a program called Wine on Wheels.

Yannick Benjamin: Correct correct and so Wine of Wheels our initiative is really to bring awareness raise money, especially our main initiative is really to kind of.

Yannick Benjamin: You know, bring awareness, to the hospitality industry about inclusivity about breaking barriers, hopefully, within the next few years, along with George Gallego i'm really trying to see.

Yannick Benjamin: You know, restaurants, hotels in any other forms of hospitality businesses to employ more people with disabilities and to help them along the way, as well.

Yannick Benjamin: And that's really the goal and the objective and then also to raise money for programs, like the Access Project that George Diego will tell you more about shortly.

Nadine Vogel: Excellent excellent, and I know that for both of you, your tagline you put in places "access for all," and I, you know that says it all right. I think that says it all.

Nadine Vogel: And, and you know I love I love Yannick that as a sommelier.

Yannick Benjamin: I finally got that right.

Nadine Vogel: i'm feeling you take it you've taken this background that you have and its talent and turned it into something that not only is good for people of all walks of life, but especially for individuals with disabilities, which.

Nadine Vogel: And it was really important we always say you know disabled lives really do matter well.

Yannick Benjamin: sure.

Nadine Vogel: Is this is it right so George tell us a little bit about your background and what you're doing.

George G.: you're so born and raised in New York.

Nadine Vogel: Woo!

George G.: we're all native new yorkers.

George G.: And and really raised and raised in brooklyn in williamsburg a which has evolved quite a bit, just like East Harlem has come a very long way from from word was back in the days.

NORMA STANLEY:  Yes.

Nadine Vogel:  I'm a Bronx girl.

George G.: All good. Bronx, Brooklyn, Manhattan.

George G.: Queens we're all new Yorkers so it's all good so as far as as far as disabilities concern I wasn't born with a disability, I, too, had an accident which caused me to become spinal cord injured.

George G.: I fell from a height equivalent to three stories while working landed on my back from the impact I severed my spinal cord.

George G.: So both Yannick and I, and I are spinal cord injured his level is a little higher than mine.

George G.: I am a T-10, T-11 I think Yannick you're a.

Yannick Benjamin: T-six.

George G.: T-six Okay, which which basically the so the main there's a difference in in everyone and every disability that everyone has experienced, but the difference between Yannick and I is basically.

George G.: The abs right, I may have a few more abs then Yannick is his injury starts from the chest upward and mine actually starts from the naval upward.

Yannick Benjamin: much, much better looking stomach than I do you know I got that little kangaroo pouch you know.

George G.: You know you look good.

George G.: so late in life really was extremely challenging after my injury, because I went from a very active lifestyle to live in a very sedentary lifestyle, I went from 160, 170 pounds up to 350 pounds.

George G.: And yeah and that's that's what happens when you rely on pain meds to deal with any any nerve issues that you may have, as well as spasms and pain in general.

George G.: So, but it took me 10 years to actually turn that around once I realized that my life was heading like quickly in a downward spiral.

George G.: I decided to first start working on myself physically, so I started exercising doing simple things and then over time, I was able to drop the weight on back down to about one well i'm I weighed less than I did before. So i'm probably at 155.

Nadine Vogel: Excellent.

George G.: And.

Nadine Vogel: Congratulations.

George G.: Thank you, thank you and I realized that getting physical getting involved in athletics.

George G.: played a huge role in my ability to be able to bounce back so primarily because once I was able to embrace my physical self everything else.

George G.: flowed after that I was able to embrace myself mentally emotionally and just move onward and upward so as far as as far as my work history is concerned, as I worked, I was in a newspaper industry, I won't name the company, I worked for cause they were horrible after my injury.

George G.: But yeah but everything changes after injury, you find yourself reinventing yourself not just once but over and over and over and if you're able to accept the fact that life will just continue to evolve, then, then you can live life to the fullest.

George G.: As far as Contento is concerned, I have never been involved in the hospitality industry in a way that Yannick was.

George G.: Never worked in a restaurant, although I love to visit restaurants.

George G.: The but the work that I have done and Yannick really helped me realize that, although I didn't work directly in the hospitality world i've always been.

George G.: involved in in giving and transfer helping transform lives, so, in a sense, thanks to the Yannick, I was able to view this through a different lens.

George G.: So the work that i've done in helping others and helping people find their path in life was similar to what Yannick has been doing all his life in the hospitality industry right, it was really all about making feel making folks feel comfortable.

George G.: With themselves and with with their surroundings and helping them really just move forward, you know embrace and move on.

Nadine Vogel: Excellent.  Thank you i'm curious I mean, I have some very specific questions for both of you or relative to the business, but I am curious how did the two of you come together.

George G.: yeah. It's a long story. So.

[Laughter]

George G.: yeah no we We will give you the condensed version.

Nadine Vogel: Okay.

George G.: So so i've been injured for almost 30 years now and Yannick and Yannick has you're going on 18 years.

Yannick Benjamin: eighteen correct correct exactly. 

George G.: Exactly so when.

George G.: So when you Yannick was first injured, I was part of a mentoring program and that's how we initially connected, I always Yannick and I will connected through the mentoring program at Mount Sinai hospital.

George G.: and also through.

George G.: The New York City chapter of the United spinal association and our our connection our friendship had evolved from that point onward.

Nadine Vogel: Very cool really yeah it's it's it's a great story and we haven't even started with the story yet oh my gosh.

Nadine Vogel: So, so you know talk to us a little bit about what are the challenges that you guys face having a disability owned restaurant, you know I mean, I think I think restaurant ownership is tough, no matter what.

Nadine Vogel: We add covid to it, of late it got tougher, but I suspect that you know, having disabilities has made it if not tougher at least very different so i'd love to hear about that.

Yannick Benjamin: Well, I mean I you know i'll speak for myself, you know I think what what's really important to emphasize is that exactly what George just said, because he's in a wheelchair and I'm in a wheelchair.

Yannick Benjamin: We, we do have different needs and we we do things differently, based on our level of injury and this applies to people in the low vision community.

Yannick Benjamin: Hard of Hearing everyone's got different needs, so I think that's you know one thing that we really have to emphasize, you know so it's a very broad category.

Yannick Benjamin: As for me, you know it's been really a blessing in disguise, in the best possible way, and when I tell you that, Contento.

Yannick Benjamin: Is a beast I say that, in the most polite way it is incredibly busy, and you know for listen i'm you know i'm a 44 year old guy right and.

Yannick Benjamin: For an able body person working in a place that's it's physically demanding you've got to move, you know even for myself, you know I worked out every day I take care of myself and eat right, you know.

Yannick Benjamin: and physically like at the end of the day, I am like wiped you know and and not only that, but um you know you've got to be on right, so you know that that emotional connection you've got to constantly be on your.

Yannick Benjamin: On your in my case, not on my toes but on my wheels right and so that that can be really you know.

Yannick Benjamin: You know draining mentally and then and then physically just you know bending here bending there all of that, you know what what what might be easier for an able body person when they're serving wine.

Yannick Benjamin: For me it's really taking that effort so that, from a personal standpoint um you know takes a lot out, you know it is, it is exhausting and I would I would never try to.

Yannick Benjamin: camouflage and pretend that i'm Superman that that oh yeah yeah yeah i'm doing it just like everybody know it takes a lot for sure.

Nadine Vogel: Right, right. No, I get it so i'm curious, if you think about you know people that you admire and then this goes to both of you, you know it's there's someone out there, that you say I just I really admired the most.

Yannick Benjamin: I look, I mean George George there I guess.

Nadine Vogel:  George.

Yannick Benjamin: All right, I mean yeah I mean listen, first and foremost, I think you know, obviously the the person that the two people that I admire the most who definitely my parents.

Yannick Benjamin: I am, where I am today because of them my value system is based on who they are, and what they taught me and and i'm just simply practicing what I learned from them.

Yannick Benjamin: But I was also very much influenced by the Christian brothers that were teachers in my elementary school.

Yannick Benjamin: So I do have a deep admiration for some of them that I grew up with you know.

Yannick Benjamin: That taught me, I mean, obviously we already know we don't have to go too deep but there's certainly a lot a lot, a lot of things that I definitely disagree with.

Yannick Benjamin: The in the Catholic religion but as far as who they were and how they.

Yannick Benjamin: empowered me and how they influenced me I I owe a great deal to them, I always admired their servitude the fact that they sacrifice the greater good to have an approach of family or being in a relationship.

Yannick Benjamin: So yeah I would say, those are people that I definitely admire there's a gentleman to that I worked with at Le Cirque, which is a very famous restaurant that's now close his name is.

Yannick Benjamin: Ciro Marchioni and I often find myself thinking about him every day, a lot, you know and he's someone that I definitely deeply admired as well.

Nadine Vogel: And it was that, because of what he built and what he did in the industry.

Yannick Benjamin: yeah I mean I think he was like you know, Mr cool right.

Yannick Benjamin: And I I always loved me he just simply had that kind of cool factor that it factor and.

Yannick Benjamin: You know I met him when I was a very young kid getting into this industry and Le Cirque at that time was the Center of the universe and.

Yannick Benjamin: He just kind of invited me in that world and I wouldn't say that he he really grabbed me my my my my by my hand but he you know, without he in directly impacted my life.

Yannick Benjamin: Very much to who I am today So yes, yes, someone that I, I always think about.

Nadine Vogel: So, so when we think about you know Norma and I talked about that you know will go out to restaurants, will take our daughters, who have disabilities will go out with us.

Nadine Vogel: You know I remember when my older daughter was younger and she was being fed through G tube and we're feeding her in the middle of a restaurant right, you know lots lots of issues, so I certainly understand the importance of creating this this culture of inclusivity in the. Industry.

Nadine Vogel: But maybe you could talk to us about you know how do we get from here to there, because if.

Nadine Vogel: there's a lot right, this is the employees, like you talked about.

Nadine Vogel: and hiring people in the hospitality industry that had disabilities but it's also how we serve people with disabilities.

Yannick Benjamin: correct and I think that's a great question and it's a it's a really important topic right because it's.

Yannick Benjamin: First and foremost, you can create a restaurant or a business that has perfect universal design that's barrier free.

Yannick Benjamin: But if you don't have that culture of empathy if you don't have that culture of welcoming and just you know have your stuff educated on how to deal with.

Yannick Benjamin: People of all different backgrounds than that universal design is useless right, it means absolutely nothing.

Yannick Benjamin: And so I think you know one obviously that continuation of education, the other side, and when I say, the other side, meaning people that work in the industry.

Yannick Benjamin: In the restaurant and the hotel and any other business, the ability to be able to listen, the ability to be able to see like I don't know, and I want to learn, please teach me.

Yannick Benjamin: With That being said, I know, when I go to a restaurant i'm a full time wheelchair user i'm paralyzed from the waist down.

Yannick Benjamin: I get it, I understand that I can't expect everybody to possibly know what I need right, so I feel like as long as I ate they have this energy of like him, and we are so happy to have you here.

Yannick Benjamin: Is there anything that we can do to make you feel comfortable, are there any use simple terminology terminology, but.

Yannick Benjamin: You know I know that I can't go in there, thinking that they are going to know everything that I need so I feel like I have a responsibility, as someone with a disability to just simply guide them and direct them.

Yannick Benjamin: And that's all it takes and just kind of talk to them and they appreciate it, I feel like sometimes.

Yannick Benjamin: We may be in our Community, and when I say our Community, people with disabilities, we often expect the other side to know things.

Yannick Benjamin: And you know what we do have a we have a responsibility, one to advocate for ourselves, but let's reach over the aisle.

Yannick Benjamin: And let let's use that opportunity to teach them and that's what it comes down to so you know not only just beat not only advocacy but also being an ambassador for the disability community, we have to also do that as well. Does that answer your question.

Nadine Vogel:  Yeah absolutely it's um and you right there's so much there because you know someone can come in the restaurant, who is blind, so we can come in who's a wheelchair users someone can come in who's death, I mean you know.

Nadine Vogel: there's all different disabilities, but I think to your point it's it's a it's two parts right it's you being willing and able to convey your needs but it's, on the other side for the restaurant owner and management to be willing to receive the information.

Yannick Benjamin: Yes

Nadine Vogel: And accommodate as needed.

Nadine Vogel: And I think that last part is the part that many of us struggle with. Sometimes.

Yannick Benjamin:  Yes yeah no no absolutely I mean listen it's up I think it's a it's a constant.

Yannick Benjamin: evolution, which is great I think we're definitely years behind, maybe even decades behind on where we should be with accommodations for people with disabilities, of all backgrounds intellectual physical neurological you name it.

Yannick Benjamin: But I do think that things have started to happen, I mean listen um and, as I say, always and George as well there's there's over 60 million Americans with disabilities, I think it's a one in four and so those are numbers that we can no longer ignore because we have to take seriously.

Yannick Benjamin: You know so that's that's where we're at right now, and I think that people that that own restaurants people that work in restaurants or any kind of hospitality, outlet.

Yannick Benjamin: has to say hey you know, we need to figure this out, because there are people that have a disability that want to spend money.

Yannick Benjamin: But they're not going out they're not going out because.

Yannick Benjamin: There is fear of rejection this fear of like i'm going to go there and they're going to make me feel uncomfortable so what may seem like an expensive concept to make your restaurant accessible but long term your return on investment.

Yannick Benjamin: is going to be there and we have seen that at Contento and i'll tell you what I want to make this very clear, you know, first and foremost foremost we're you know we're a small restaurant right.

Yannick Benjamin: We really are ideally you know if we could, if we had the money we had the resources we would have a restaurant that's 5000 square feet.

Yannick Benjamin: and tables be spaced out, we will do the whole shebang that's not the reality of it, but the most important thing is creating a culture of.

Yannick Benjamin: have been inviting have an empathy and saying hey we are here for you just tell us what you need to do what you need and we're going to make it happen.

Nadine Vogel: Right right absolutely and norma, I mean Sierra your daughter she's she uses a wheelchair, so I mean you live this every day right.

NORMA STANLEY: Absolutely, and I just love the fact that you know what he said, where it is the onus is on us to as customers.

NORMA STANLEY: With them family members with wheelchairs or individuals who may be using wheelchairs, or may have a disability, just to kind of I guess put pride aside and say you know what I could use your help in this area.

NORMA STANLEY: In your.

NORMA STANLEY: establishment to make you more comfortable just something that I guess you know we don't do, and we do probably expect more of the.

Yannick Benjamin. Yes.

NORMA STANLEY: People at the restaurant or at the establishment and they may actually prepared.

NORMA STANLEY: right to be able to address, so this a two-way street um but at the same time, you know I just think I love this and to be able to eat at your restaurant next time I'm in New York.

NORMA STANLEY: That's my old neighborhood.

Nadine Vogel: Well you know.  It's it's one of these things you know i've been to many restaurants and I go to use the restroom and they'll say yes, you know there is an accessible restroom, but then there's like a high chair, or something blocking.

NORMA STANLEY: Oh.

Nadine Vogel: You have to.

Nadine Vogel: navigate around you can't get in there and i'm thinking really.

Nadine Vogel: You know, and I and i'm.

Nadine Vogel: I have no issue saying something and and I, 

Yanick Benjamin:  Good. 

Nadine Vogel: you know I say something all they time, but you know they look at me like I have four heads it it's just.

Nadine Vogel: Yes, really I just makes me makes me crazy well, we need, we must, I could well I don't even want to stop, but we need to take a short commercial break.

Nadine Vogel: But when we come back, we are going to talk more with Yannick Benjamin and with George Gallego and we will find George we may have lost him oh.

Nadine Vogel: So stay tuned everybody don't go anywhere.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone and welcome back to today's episode of disabled lives matter we are here with the amazing Yannick Benjamin.

Nadine Vogel: and his business partner George Gallego and we're talking about there with sounds like an fabulous restaurant I can't wait to go Contento in East Harlem and you know.

Nadine Vogel: When we when we left before commercial break, we were talking about asking for what you need right, and you know I brought up the example of your restaurants that yeah, this is an accessible restroom you just can't get in there, but, but we have one so.

Nadine Vogel: You know it's one of these things where.

Nadine Vogel: it's what you know what does it take first and foremost, to have a great restaurant, what are the key components of having a great restaurant and then How does that change if it changes to be a great restaurant and i'm going to put this in quotes for all.

Yannick Benjamin: Right. Well, first of all, first and foremost almost i'm always shocked when I meet people that work in the hospitality industry and they tell me how they hate people.

Yannick Benjamin: Very strange thing to hear, but you, you know if you're going to be in this industry you've got to like people you've got to be able to like to interact hear their stories and and, first and foremost.

Yannick Benjamin: sort of kind of make them the priority right it's about creating experience for them now, I want to make one thing very clear, I am not I don't believe in that philosophy that the customer is always right.

NORMA STANLEY:  Right.

Yannick Benjamin: I don't do that because I think that there's plenty of times, where the customer is wrong.

Yannick Benjamin: And I tell the rest of the staff at Contento that if you feel at any moment that someone is making you feel uncomfortable or being disrespectful.

Yannick Benjamin: Do not take that or let me know, and I will handle it I think that's really important especially.

Yannick Benjamin: Now that we're heading into this new era post covid you really you really have to love people, you have to be passionate about food and and and beverage.

Yannick Benjamin: And within that figure out what it would genre you really are passionate about whether it's South American Food French, Italian, whatever it is, it could be anything fast food doesn't make a difference.

Yannick Benjamin: So you you the food that you serve the beverages that you serve are all stuff that you would be willing to eat yourself and something that you would.

Yannick Benjamin: enjoy at your own home, so I think if you do that, then you've got to create an ambience I mean you can have the best, the most expensive interior designer.

Yannick Benjamin: create your restaurant, but if it doesn't have the energy and the ambiance of welcoming then it's going to be a total utter failure, and I think the best restaurants that i've ever been to sometimes they just have a very minimalist approach.

Yannick Benjamin: But when you go there it's just like it.

Yannick Benjamin: there's this energy of welcoming and love and i'm like okay that's it and I think listen Contento certainly has been able to do that for sure so you've got to be able to create that energy that's that's, the most important thing okay.

NORMA STANLEY:  I agree.

Nadine Vogel: So. How did you and George actually come together to to you know, in terms of Contento, specifically like what was what was the idea.

Yannick Benjamin: yeah so George is all as he likes to describe himself and I totally agree he calls himself a social entrepreneur, you know, and it was always on the go he's got his hands in different projects, I was working you know all the time in different restaurants different hospitality establishments.

Yannick Benjamin: And George being the mentor that he is and just kind of the go getters a Yannick like why don't you work for yourself hey i'm working for other people and i'm like George this industry's, a beast.

Yannick Benjamin: It is hard like yeah I don't know.

Yannick Benjamin: Well, anyway, fast forward right down the block from where he lives because he lives on 111 between park and Madison at this in this beautiful building.

Yannick Benjamin: And there was a spot that was open, he said, I think there's something very interesting, you should come check it out and I looked at it and the rent was incredibly low was like almost like hard to believe, and he said I would love to be involved, and you know that's.

Yannick Benjamin: that's all she wrote after that.

Nadine Vogel: That that's that's that's amazing that really is I love the simplicity of that don't you norma.

 

NORMA STANLEY: it's the connection that's what I call it and exactly and actually my in laws live a block away.

NORMA STANLEY: From your restaurant so.

NORMA STANLEY: I will defintely be they're on 110th and.

NORMA STANLEY: park.

Yannick Benjamin: Oh well, have them come by we would love to have them. Absolutely.

NORMA STANLEY:  Absolutely.

Nadine Vogel:  So George. Your back yay!

George G.: I'm Back yeah so I.

George G.: So, as I mentioned earlier, I'm at the space that we're building out and my HVAC guys are here and we, the power went down temporarily I didn't realize it happened until.

George G.: The Internet and everything went down.

George G.: So we had connection, but not.

Nadine Vogel: No problem.

Nadine Vogel: So so George let me ask you this, what do you think it's going to take to get more people with disabilities in the hospitality industry.

Nadine Vogel: Because I can see so many different issues like we don't have more so, what do you think it's going to take.

George G.: So I so Yannick is going to handle one part, and together we'll handle the second part, so.

George G.: Yannick has already started the movement within the.

George G.: hospitality industry and he's got folks really accepting idea of having people with disabilities all types of disabilities within their workspace.

George G.: There are certain things as a person, as a person with a mobility impairment, that I can do.

George G.: Obviously, certain things that I cannot do and I accept that but i'm willing to do the best that I can do in those areas that I can actually maneuver.

George G.: And, and so folks within the hospitality industry are receptive to the message right, but the second part is to get folks in a disability community.

George G.: To to believe in themselves and and and realize that they can change to the point where they can actually move on in life and accepted a position and hospitality industry.

George G.: But there's so many fears involved, you know within folks in the disability Community you know people are afraid of losing their their healthcare benefits they're afraid to you to lose their.

George G.: Their fixed incomes, the SSI or the ssdI and many don't realize that that life will definitely change it become better once you actually have a sustainable income that's not a fixed income.

George G.: So, so what Yannick and I intend on doing is within within the space of Content, and also whether this new space that we're building in East Harlem.

George G.: We plan plan on utilizing both spaces to create programs to focus on on on making these changes within the minds of the folks that we're working with whether it's it's the folks in the hospitality industry or our comrades in a disability Community.
 

Nadine Vogel: Excellent excellent.

Nadine Vogel: I imagine is like fears of you know, even just accessibility of the kitchens right, if not, if not the the dining rooms themselves just the kitchens, because I know we have a whole team that does.

Nadine Vogel: Universal design physical accessibility audit things like that and we've gone into restaurants and we've gotten even into corporations, where they've had you know, on site cafeterias and we go into the kitchen and we look around and we're like yeah no this won't work.

Yannick Benjamin: yeah Nadine, I just want to say one thing, I think, though, I you know one thing that's a major issue, too, is if we had universal health care if we, had guaranteed like.

Yannick Benjamin: medicaid was provided just across the board, I think it would relieve some of the anxieties that that most people with disabilities have.

Yannick Benjamin: And I think one of the main issues now imagine if you're just able body right and you found yourself working at like a really good hotel company right let's say the Marriott right where they offer pretty great benefits great.

Yannick Benjamin: private insurance and you have a very intimate relationship with your Ob gyn your gynecologist your your urologist right.

Yannick Benjamin: And all of a sudden there's a new job that there's an opportunity right.

Yannick Benjamin: You may not take that job only for the fact, because the insurance that they're offering now is no longer in network with the Ob gyn the gynecologist your urologist that you've been seeing for all that time.

Yannick Benjamin: And you know the system that we have it there's a form of oppression toward with it.

Yannick Benjamin: And so that in itself is an issue, so if you if you if you rely on a home attendant to come in two hours in the morning to get you out of bed.

Yannick Benjamin: You know you're relying on 150 catheters you know now you're kind of playing with fire, because you don't know what that private insurance can do to you right you don't.

Yannick Benjamin: And so, that is the biggest issue, and so what we need to do is get really powerful voices in the hospitality industry to come together and why not get a nationalized.

Yannick Benjamin: Healthcare insurance plan, and I think if you get that locked in, I can tell you, you will see more people more.

Yannick Benjamin: Not more diverse people working in the industry, but it's still an industry that's incredibly volatile and lock structure and until we get that down I think it's going to be very complicated.

Nadine Vogel: So i'm i'm imagining that the two of you are going after Congress going after all the major industry organizations speaking at their conferences, yes.

George G.: All I wanted was to open a small restaurant that's all I wanted.

George G.: And it's now evolved into this.

George G.: This this movement, which is, which is really it's really amazing and it's not something that that we anticipated but it's the path that we're on now.

Nadine Vogel: yeah. No you guys.

Nadine Vogel: should be at these like you know industry, conferences and be talking about this right, this is.

NORMA STANLEY: I was on a recent conversation with one of the food writers for the nations restaurant news magazine, and I definitely think that y'all should have a conversation.

Nadine Vogel: Norma can you make an introduction.

NORMA STANLEY: Definitely do that I can definitely do it.

Nadine Vogel: All right, yeah we got we got to get this story out there bigger bigger, better because.

Nadine Vogel: it's that important so we've been talking about all the really cool things positive things any regrets anything you would do differently.

George G.: I. thing that.

George G.: Personally I.

George G.: We i've had so many experiences in life great experiences horrible experiences manageable experiences, but i've never been one to say that I regret any of my experiences because i'm who I am today because of the sum of all of my experience.

Nadine Vogel: So I wouldn't change it.

George G.: I would just just learn from it and keep on moving forward.

Nadine Vogel: got it okay Yannick.

Yannick Benjamin: Oh God, I mean again um what would I have done differently, I mean listen there's I think you know I certainly don't regret because I think that one thing that I will say is that.

Yannick Benjamin: There are mistakes that have been done not purposely and you learn from them and you try to improve and improve upon them, and you build upon that you know it's sort of like you know layer by layer by layer and so.

Yannick Benjamin: That that's what I I try to do I think that's what George tries to do that's what we all try to do.

George G.: Absolutely.

Yannick Benjamin: and really and that's the key.

Nadine Vogel: yeah no absolutely, so we are running out of time which is really sad because I could talk to you guys, like all day.

Nadine Vogel: um.

Nadine Vogel: Let me ask one last question, if I may, and if there's anybody dead or alive that you could sit down and have dinner with who would it be.

Yannick Benjamin: You want to go first George.

George G.: Sure, so my my father passed.

George G.: In 1990 and he hadn't never had a chance to see or experience anything that I seen and experienced so I would love to be able to bring him back.

George G.: Just so that I can show him what has become of his son and his other children and my children as well, he never had a chance to meet his grandkids, so I would love to bring them back have a sit down right like they do, and in Yannick's world, you know the mafioso guys.

George G.: Only kidding and.

George G.: You know and introduce him to my life.

George G.: and to the people that i'm surrounded by.

George G.: So, and you Yannick.

Yannick Benjamin: yeah I mean I mean someone you know kind of I i've never met my grandfather on my father's side who actually went blind.

Yannick Benjamin: In his in his 40s he was a farmer lived in the middle of the country, so not much access, but you know i'd love to have a conversation with him and and.

Yannick Benjamin: kind of like George just kind of tell him what i'm up to and and understand what his I mean you know I can't imagine what it was like being a farmer during World War one World War Two in France under the occupation.

Yannick Benjamin: and have going blind, you know, for you know so i'm sure he's got plenty of stories so yeah.

Nadine Vogel: Well, I gotta tell you my goal.

Nadine Vogel: Is next time i'm in Manhattan next time i'm up there is to have dinner with the.

Nadine Vogel: Two of you, at Contento.

Nadine Vogel: That's my goal.

Nadine Vogel: So i'd norma any any closing remarks you like to make.

NORMA STANLEY: same thing, I look forward to checking your restaurant out i'm a foodie at heart, I love to cook and I would love to know what your menus are but we're going to find that in-person.

Nadine Vogel: yeah we're gonna go check that out well George Yannick Thank you so much you so illustrate the power of disability and that disabled lives really do matter, so we know all of our listeners they're gonna be like oh my gosh when I, how do I make a reservation, how do I get there, so we.

Nadine Vogel: can't wait.

Nadine Vogel: until the crowds start coming.

Nadine Vogel: yeah look forward to staying in touch guys Thank you again so much.

NORMA STANLEY: Yes, thank you.

Yannick Benjamin: Thank you for having us.

George G.:  Thank you for having us.  Have a great day.

Nadine Vogel: Okay bye-bye.

NORMA STANLEY: Have a blessed day.

Yannick Benjamin: You to.

George G.: Likewise and stay safe everyone.

NORMA STANLEY: You too.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S1-Ep35_Kyle_Maynard

S1-Ep35_Kyle_Maynard

October 29, 2021

Disabled Lives Matter
Season 1, Episode 35
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Kyle Maynard

 

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everybody, this is nadine vogel your co host of the podcast disabled lives matter, and I am joined by my fabulous co host norma Stanley.

NORMA STANLEY: Hello everyone.

Nadine Vogel: And as norma and I always say this is much more than a podcast, this is a movement and y'all need to join this movement now.

NORMA STANLEY: Absolutely.

Nadine Vogel: Right. Well, this is going to be a really exciting episode, because we are joined by Kyle Maynard.

Nadine Vogel: kyle is well he's a lot of things he's an entrepreneur speaker best selling author he's an award winning extreme athlete because being a general it is not enough.

Nadine Vogel: And the first man to bear crawl to the top of the highest mountain in Africa mount kilimanjaro and a summit of argentina's Mount. Aconcagua, if I said that right.

Nadine Vogel: Aconcagua, if I said that right, which I think is the highest peak in both hemispheres so i'm just going to start with this um first of all Kyle I don't know how many people you really are because I don't know one person that can actually do all those things.

Nadine Vogel:  [Laughter.]

Kyle Maynard:  [Laughter.]

Kyle Maynard: There may be a few doppelgangers out there.

Kyle Maynard: Yeah.  If I do anything too bad, then I can blame it on them.

Nadine Vogel: Oh, my gosh um so first of all talk about what is bear crawl.

Kyle Maynard: Bear crawling is basically the way that I walk.

Kyle Maynard: So I know we're recording video, but basically to give your listeners like a perspective i'd.

Kyle Maynard: I walk from like from my elbows and knees.

Kyle Maynard: And so.

Kyle Maynard: A lot of people I know with like you know in chairs and stuff like that, like you know the transfer out.

Kyle Maynard: You know, get on to a different things to climb up on different stuff for me I don't really use a chair in my house at all, so when I walk up just walking on my elbows and knees.

Nadine Vogel: Okay, so that's what that is so now, if I understood correctly, I think that you had you were born with this condition, but in your entire life you've never used any kind of prosthetics.

Kyle Maynard: I used to when I was younger.

 

Nadine Vogel: Okay.

Kyle Maynard:  Basically um.

Kyle Maynard: I use them to help with like.

Kyle Maynard: Certain things like reaching certain things.

Nadine Vogel: Okay.

Kyle Maynard: And I still sometimes will use similar things like stools are cherries, are that kind of stuff you can jump up on countertops but the prosthetics I would use this like hooks to grab on the stuff.

Nadine Vogel: got it got it, so I am really, really height impaired just so you know, and so let me just tell you anything I can take I will take like hangers.

Nadine Vogel: And hooks and everything's just to reach things because I can't reach anything which is in no way anything like living with a disability.

Nadine Vogel: But just from a height perspective and trying to get to things I tell people all the time, like you know what do you think is typical height, because to me it always seems like it should be the jolly jolly green giant the way everybody uses things to reach you know.

Nadine Vogel: So you know you've been very focused on on living independently from the very beginning, so how does someone with with disabilities, such as the ones you have.

Nadine Vogel: Go to become like a championship wrestling I think you're a crossfit certified instructor I can't imagine doing crossfit on my best physical day.

Nadine Vogel: So, how did you get from one place to the other like what what took you there.

Kyle Maynard: Basically, it was I first fell in love with it, I found there's a video online it's a it's kind of obscure name but it's called the nasty girls.

Kyle Maynard: Okay, so there were these then it's a workout for their these three these three girls that were like Eva T was one, there was a girl named Nicole.

Kyle Maynard: Can't remember Nicole's last name.

Kyle Maynard: and annie sakamoto I think was the other.

Kyle Maynard: So I watched that video and I just fell in love with it, and I was like man, this is this awesome the sport everything about it like it was very similar to like this kind of like philosophy that I had you know, training, the wrestling stuff like that.

Nadine Vogel: growing up.

Kyle Maynard: So it was on it was yeah it was just a that's kind of where I fell in love with it, and I remember one of the girls.

Kyle Maynard: At the end of.

Kyle Maynard: The first workout.

Kyle Maynard: She cried.

Kyle Maynard: And I was like whoa you know that's that's insane that's like that level of intensity would bring somebody to that position.

Nadine Vogel: Right right, it is intense and you said you you started this very young so i'm curious from a parent perspective, how they reacted to you doing this with they nervous for you, I mean.

Nadine Vogel: I I have an adult daughter, with significant physical disabilities and I, you know would always anytime she wants to do something that I thought was a little too physical I would get so nervous.

Kyle Maynard: yeah.

Nadine Vogel: You know how did your parents react.

Kyle Maynard: I could always kind of um.

Kyle Maynard: accepted the fact that, like some of the things I wanted to do, maybe they weren't their favorite things.

Kyle Maynard: You know, stepping in a cage at MMA I think that was probably the most extreme.

Kyle Maynard: it's definitely something that was totally totally different than.

Kyle Maynard: Yes, i'd done before.

Nadine Vogel: yeah that would scare the bejesus out of me.

Nadine Vogel: So you have written a book, if I recall correctly called No Excuses, and I believe it's a New York Times bestseller um when you say no excuses talk to us what's behind that.

Kyle Maynard: Basically it's it's like the philosophy of it is, is that there's always like an excuse or reason to not do something.

Nadine Vogel: mm hmm.

Kyle Maynard: Right and there's always going to be a you know a thing that keeps us from our potential in life, and that that you know, identifying what those things are is that the first step to be able to do something about it.

Kyle Maynard: It was something that my wrestling coach came up with I didn't get the credit for it, he said he would say you know, during practices basically.

Kyle Maynard: You know kids would come up to me, complain like on my wrist hurts my leg hurts, and all that he'd say like oh kyle probably wishes that he had wrist or a leg to hurt. and.

Nadine Vogel: Right. So i'm curious you know this this story this book on and in this focus of you know no excuses you're a public speaker.

Nadine Vogel: On you speak to audiences of students of executives of other athletes, so when you when you speak to them about this and coming from the perspective of someone with a disability, how do you find the audiences react and respond to it are they different from one another, for some reason.

Kyle Maynard: yeah it's um it's kind of a wide range of different groups over the years it's been like you know that's kind of the cool thing about it so i've gotten perspective from like elementary school classrooms all the way up to fortune 500 companies, you know.

Kyle Maynard: Military special operations groups, you know wrestling teams to like NC double-A gymnastics events all kinds of stuff you know and where we met with the runway dreams right like it's a totally different thing in terms of like a fashion related.

Kyle Maynard: bank so it's it's been pretty cool that the the message itself is a seeming way sort of fairly universal one um.

Kyle Maynard: And so you know it sort of blends and lends itself to being adaptable in different groups.

Nadine Vogel: Right, right. Well you know it's just interesting because um.

Nadine Vogel: I think that people pick up on things differently right depending what their own experiences are, and so you know, we know that and we've experienced here that you know children.

Nadine Vogel: especially younger children they fear disability because it's not known to them that they don't know what to expect, and so I just wonder what they take away from that presentation from hearing you then you know someone who's 50 years old, live their life and said yeah I get it.

Kyle Maynard: yeah there's I mean definitely different different people say different things.

Kyle Maynard: I remember one one kid that stands out there was a speech in like a small mining town in West Virginia and he said afterwards, you were like talking about their dreams like what do you want to do when you grow up and said, I want to work at mcdonald's.

Kyle Maynard: And I was like.

Kyle Maynard: that's awesome wasn't what I was expecting but. You know.

Nadine Vogel: it's yeah it's interesting perspective is everything right.

Nadine Vogel: And I know, one of the groups that that you also speak with quite often, and not just speak with but you've committed time and resources to is working with wounded and recovering veterans so, can you tell us a little bit about that.

Kyle Maynard: Sure um yeah so it's been a dream of mine to you know, since I was a kid I dreamed about serving in the military that the.

Kyle Maynard: You know, for me, like the.

Kyle Maynard: The cards that I was still you know it's something that was going to be possible, so it's something that you know it's just.

Kyle Maynard: I think those those dreams have kind of changed and evolved over time and I realized that I could go and contribute in a different sort of way right.

Kyle Maynard: And I think that that sort of you know it's a similar thing that a lot of the troops have to deal with when they come back home with an injury right it's like how do they go and continue to.

Kyle Maynard: provide meaningful value and service in a way that you know after they've endured some sort of injury yeah.

Nadine Vogel: Right.  And I would think that you uniquely can help them from the standpoint of you live with this your whole life right they said they've suddenly been thrown into it.

Kyle Maynard: it's a.

Kyle Maynard: it's it's a different thing, though, to I mean, given the fact that, like I have grown up.

Kyle Maynard: With it, you know they haven't.

Nadine Vogel:  Right.

Kyle Maynard: So you.

Kyle Maynard: Should have seen that in the world that have disability, a lot we have different people that you know adapted to different things at different times you know, sometimes like there's injuries and you know just different life things that happen and occur.

Kyle Maynard: Even even with covid you know it's i've got a friend last night that I was texting with that literally she was saying that like she's she's having a super hard time with the like with.

Kyle Maynard: Depression and like like mental health stuff as a consequence of covid I was like wow I never really thought that that was, you know that that was a thing right like it's not something that gets covered all the time.

NORMA STANLEY: Right yeah.

Nadine Vogel: we've been on it springboard I would say, probably more than any other topic that we've had for request for in the last year and a half to do, training and resilience programming is around anxiety and depression related to covid.

Kyle Maynard: Really.

Nadine Vogel: Yeah.

Kyle Maynard: Wow is it in terms of people that have had the virus, or is it people that were like dealing with the lockdown.

Nadine Vogel: Everything 

Kyle Maynard: Or both.

Nadine Vogel:  Yeah so we have folks you know that that had been dealing with working from home and really feel like they need to be in an environment with other people.

Nadine Vogel: Then you have folks are working like in a distribution Center have to be with other people that really feel like they want to be.

Nadine Vogel: You know, working at home, we have folks who have children with disabilities at home that when they couldn't go to school, the parents were really struggling with how to help them and not have them regressed either physically or.

Nadine Vogel: academically right whatever whatever the issues were on, we also have issues of just people now it's there's so much uncertainty.

Nadine Vogel: You know my employer said we're going to go back to work in October well here's October, now they said, well, maybe January will make like.

Nadine Vogel: People are just struggling in different ways, and I I you know, I wonder how and maybe you can share with our audience are there other pieces in that in your no excuses book.

Nadine Vogel: That could apply to this, and maybe you could help them kind of get out of some of the way they're feeling because mental health is thoughts and feelings right it's a disability, that we don't see.

Kyle Maynard: it's actually it's been so long since I.

Kyle Maynard: Since I wrote the book.

Nadine Vogel: That's your homework, you need to go back.

Kyle Maynard: You mean, go back and read the book.

Nadine Vogel: [Laughter.] And they come back and talk about it um you know, I think, even for folks listening, I mean norma you, you and I were talking about this, I was telling her you that you do Brazilian Jiu jitsu.

Nadine Vogel: So why don't you just first tell our audience what that is and how it's different than other jujitsu because.

Nadine Vogel: I read a little bit about it, and my mind was like blown.

Kyle Maynard: yeah it's a.

Kyle Maynard: So basically.

Kyle Maynard: The short story with that is is that it's like.

Kyle Maynard: Three dimensional wrestling.

NORMA STANLEY: wow.

Kyle Maynard: So it's in the wrestling wrestling take a very two dimensional kind of like impact kind of like force on force on that thing and jujitsu I think is just adds a new dimension to it.

Kyle Maynard: Because in wrestling you can't be pinned right are you The goal is to not be pinned in jujitsu it opens up the dimension and allows you to get to learn to fight from the back.

Kyle Maynard: So it's.

Kyle Maynard: It that just yet kind of adds like a different layer of have a whole new world and it opens up with that and it's not necessarily that one is like you know superior or.

Kyle Maynard: or not it's.

Kyle Maynard: I mean, there is an objective aspect to that, I think.

Kyle Maynard: If I were to choose kind of an equally matched.

Kyle Maynard: Jiu jitsu.

Kyle Maynard: fighter compared to a wrestler I would say, probably I put my money on the jujitsu person nine outta 10 times.

Kyle Maynard: I mean it's depends I mean if it's if it's actually maybe maybe less maybe less than that maybe.

Kyle Maynard: somewhere between six and eight is it's.

Kyle Maynard: yeah it's actually in wrestling it teaches you how to like control the space much more effectively right, so you can.

Kyle Maynard: You can force take Downs and things like that, and if you're in a in a fight, you know, in a street fight kind of situation self Defense situation, then you don't want to end up on your back.

Kyle Maynard: But in jujitsu too at the same time, if it's a one verse one like even fight where there aren't other people that are involved in it, and I think that, like.

Kyle Maynard: jujitsu probably superior because it allows you to be able to go and do things with wrestling while right wrestling tells you don't break this person's arm don't choke the person.

Kyle Maynard: Don't you know don't go to your back and get pinned in jujitsu that's the goal.

Kyle Maynard: Right is not necessarily it's.

Kyle Maynard: it's yeah to do all the things that wrestling tells you not to do.

Kyle Maynard: So when you first go into wrestling from Jiu jitsu than it like you, basically, are taught all these like super bad habits.

Nadine Vogel: Right right, you have to unlearn things.

Kyle Maynard: Exactly.

Nadine Vogel: Wow. That's kind of interesting. So we have to break for commercial, but when we come back Kyle because you.

Nadine Vogel: professionally speak all over the world, you know you're always traveling so i'd like to talk about how one covid has kind of had an impact on that, but then two just about you know accessible travel.

Nadine Vogel: And what that looks like, and you know if you have thoughts for the travel industry we'd love to hear some of that.

Nadine Vogel: So let's just go to commercial break, and this is Nadine Vogel with Norma Stanley our guest Kyle Maynard and we'll back in just a minute don't go anywhere.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: So kyle I am so excited to be talking to you today Norma and I have had many conversations about travel and accessible travel as folks know she has an adult daughter Sierra he's a wheelchair and.

Nadine Vogel: I mean you travel all over the world, well, I mean I don't know about with covid I guess know we should start there I don't know what your travel schedule.

Nadine Vogel: has been like covid and how its impacted maybe we'll start with that, but now what i'd love to understand is your perspective.

Nadine Vogel: On traveling with a disability, and you know, helping the industry understand that disability doesn't just mean someone's coming here in a wheelchair.

Nadine Vogel: Right and how we how we address that.

Nadine Vogel: So it's all yours.

Kyle Maynard: So.

Kyle Maynard: I think I have a unique perspective of being able to travel, I mean there's there's definitely some difficulties but um you know it's by and large I use a like a push wheelchair, as opposed to a.

Kyle Maynard: Okay yeah.

Norma Stanley: Motorized.

Kyle Maynard: Like dead motorized heavy powered wheelchairs.

Nadine Vogel:  Right.

Kyle Maynard: it's um.

Kyle Maynard: My first trip that I ever took on my own I used a heavy motorized wheelchair, and so it was a landed in Las Vegas and have added you know, a 250 pound chair.

Kyle Maynard: And I had to figure out how to get from the hotel to from the airport to the hotel and.

Kyle Maynard: ended up booking a ticket on a on a bus that was like a special there's like a tour bus Basically, this is only thing that had a lift.

Kyle Maynard: To find like a cab you know I think now and Vegas they have a bunch of the caps that have ramps and such a time that you know wasn't the case, and so it was super just difficult thing to you know to deal with.

Kyle Maynard: And then, basically, you know I realized at that point that I wanted to go and travel with the with the.

Kyle Maynard: The Non mechanical chair, with the most share and it helped things a lot um.

Kyle Maynard: So.

Kyle Maynard: yeah that's basically you know, one of my main reasons for for doing that I know you know it's just not easy to get around when you're when you're dealing with that 300 plus pound chair.

NORMA STANLEY: Yeah. I'm always dealing with that.

NORMA STANLEY: Because of my daughter I sustained you know nerve damage in my arm, as a result of putting my daughter in and out of her wheelchair.

NORMA STANLEY: In the car, you know, putting it in the car every day for the last 30 years, and so you know, I was moving towards the motorized chair probably so I wouldn't have to do as much of that every day, but you know when I travel, I actually prefer to the push chairs.

NORMA STANLEY: And i've heard that.

NORMA STANLEY: the motorized chairs, they damage them when they travel with them.

NORMA STANLEY: And also, you know they're highly expensive, so I you know I probably will be using a pushchair as a as a backup when we do both go out of town.

NORMA STANLEY: You know, just to be on the safe side because I mean those things are you know aren not just simple to come by as some people think.

Kyle Maynard: Totally yeah and it's also you know you feel for the perspective of the airlines to right like it's you know the planes have a certain amount of weight that they can go and carry and then you know you add another.

Kyle Maynard: You know 300 plus pound chair to the to the mix and it's you know.

NORMA STANLEY: yeah that's a whole nother situation that's true.

Nadine Vogel: It but in terms of travel Kyle, what have you found um you know traveling in the US versus traveling in other countries.

Nadine Vogel: Because obviously you've traveled all around the world, what kind of perspective can you share as someone.

Nadine Vogel: Who has a disability, who is who is able to get around every place but you know what what kinds of issues have you faced or have you had to overcome, so to speak, because of your disability.

Kyle Maynard: yeah it's it's it's super.

Kyle Maynard: You something we take for granted, I think, being in the US, you know it's a relatively younger country as opposed to like being in Europe, for instance.

Kyle Maynard: More and a lot of like developing areas of the world.

Kyle Maynard: I think that they have similar challenges for different reasons, so in in Europe, you got massive cobblestones yeah.

Kyle Maynard: Just like that, and its historic buildings right that are these ancient buildings that they.

Kyle Maynard: Say it's really tough to to get around.

Kyle Maynard: And then.

Kyle Maynard: In.

Kyle Maynard: In other developing areas of the world like Bali is one of my favorite places.

Norma Stanley:  I always wanted to go there.  

Kyle Maynard: Ah it's amazing.

Kyle Maynard: This is really special place but it's really hard to get around even for me to get around there was like was really difficult.

Nadine Vogel:  Really.

Kyle Maynard: Yeah it was.

Kyle Maynard: yeah super challenging.

Nadine Vogel: How do you find the perspective of the people in the different countries, so you know one part of accessibility is that is a physical accessibility, but then we have you know all the other components about how people communicate how they willing to how comfortable, they are engaging.

Nadine Vogel: You know what have you found there.

Kyle Maynard: um let's say it's.

Kyle Maynard: A pretty universally seems as though it's kind of like one of the biggest perks of being born with a disability is.

Kyle Maynard: it's a.

Kyle Maynard: bit kind of you know, I think it helps people make you, you know helps people be more compassionate and understanding, I think.

Kyle Maynard: If. That makes sense yeah.

Kyle Maynard: At least that what i've experienced.

Kyle Maynard: um it's definitely not always the case.

Kyle Maynard: yeah I would say.

Kyle Maynard: That it's basically that's a.

Kyle Maynard: People are for the most part they're pretty understanding.

Kyle Maynard: other places where people like Americans traditionally like don't really have you know that people aren't that Nice to him, like in in France France that's right it's like traveling through France people were awesome and super nice to me.

Nadine Vogel:  Okay.

Kyle Maynard: In um

Kyle Maynard: You know from other Americans that i've heard say that that's definitely not the case.

Nadine Vogel: yeah like. How did I not have.

Nadine Vogel: That experience.

Kyle Maynard:  Exactly.

Nadine Vogel: So I know we only have like a couple minutes left, but one of the things that I know has been really, really important to you is nutrition and health.

Nadine Vogel: I mean, obviously, from all the sports side of everything you do, but even just you know what you put in your body things like that um I think I think it's something that can help everyone so, can you can you share a little bit about that.

Kyle Maynard: yeah um you know.

Kyle Maynard: Probably in the state right now relearning a lot of that stuff.

Kyle Maynard: Okay it's not something i've spoken about publicly yet, but I actually just as up like two days ago.

Kyle Maynard: got diagnosed with a brain injury.

Nadine Vogel:  Oh no. I'm so sorry.

Kyle Maynard: I'm hesitating.

Kyle Maynard: Even saying that publicly but it's something that's like a totally new disability aspect of things that i've never you know I had to deal with so basically.

Kyle Maynard: I was told that I have currently a dime sized hole in my brain from like potentially from like taking a knee in jiu jitsu, but not entirely sure what.

Kyle Maynard: it's been that way for a while it's kind of been battling just depression, anxiety other things like that sleep issues stuff that I hadn't had to deal with before.

Kyle Maynard: So it's um.

Kyle Maynard: You know i'm in the process of kind of re learning a lot of.

Kyle Maynard: You know just life stuff.

Nadine Vogel: Sure. Sure.

Nadine Vogel: Understandably so, so I think my my last question for you and I think it it kind of brings all of it together.

Nadine Vogel: What is it that drives you I mean you are so unbelievably driven right beyond no excuses it's like God forget the excuses that's all right.

Nadine Vogel: What what is, what is your mindset like, how do you do that.

Kyle Maynard: Uh. Do what.

Nadine Vogel: Just be so driven right, no matter what you're told what your slot with what happens is like yeah okay fine move on we're going to get past it we're going to you know one plus one is going to be three.

Nadine Vogel: we're going to just make this the best way to make it, how do you I know our listeners, you know, want to hear that they want to hear.

Nadine Vogel: My gosh I complain about my daily thing, and I have just this but look at everything kyle you know, has had to deal with is dealing with yet he is just fighting fighting pushing pushing moving it's a mindset issue, but I think our listeners would love to know how you get that mindset.

Kyle Maynard: The first thing I would say is I don't have that mindset daily it's something that like have to continually battle and. You know.

Nadine Vogel:  Okay.

Kyle Maynard: um and I think it's especially been difficult lately.

Kyle Maynard: Um. And that's Okay, you know it's a.

Kyle Maynard: it's it's not a it's not a one size fits all approach with things right, but I think faith is a big aspect of it.

Kyle Maynard: spirituality.

Kyle Maynard: Just constantly learning psychology philosophy as much as I can you know take in different different perspectives and different things, exposing myself and being around people that inspire me.

Kyle Maynard: I think is is really is pretty pretty key um you know, I think.

Kyle Maynard: Our mental.

Kyle Maynard: Mental diet, so to speak, is a big aspect of what.

Kyle Maynard: Like.

Kyle Maynard: Fuels us.

Kyle Maynard: Yes, it's sort of do we have our physical things so you're asking about like you know, nutrition and that kind of stuff right.

Kyle Maynard: I think that's it's also like the diet perspective is coming from like what in who were taking it in interacting with and what we're allowing ourselves to be influenced by.

Nadine Vogel:  Right.

NORMA STANLEY: environment.

Kyle Maynard: yeah like environmental factors may be that we wouldn't like morally consider as environmental factors that are probably some of the most environmental factors right like they think it was um.

Kyle Maynard: Was it Stephen covey who is on.

Kyle Maynard: No. Dale carnegie's another when it comes alive it wasn't him there is that it was Tony robbins mentor he said i'm actually just.

Norma Stanley:  Jim Rohn

Kyle Maynard: Jim Rohn. that's it.

Nadine Vogel: I know i'm like okay i'm running your name in my head.

Nadine Vogel: You win the prizes norma.

Kyle Maynard: He he said.

Kyle Maynard: You know you're most influenced by the five people you spend the most time with.

NORMA STANLEY: yeah yeah.

Nadine Vogel: That is for sure.

Kyle Maynard: And so I think lately i've tried to like have a bit more of like a group let's kind of like elimination of the like the things that are are the people that I want to spend time with.

NORMA STANLEY: Amen. I'm in the same space, I hear you.

Kyle Maynard:  Yup.

Nadine Vogel: You know it's it's important it's um I think sometimes we don't realize how toxic people are environments can be.

Nadine Vogel: But we get in a rut right we just get you know used to it here's what we do every day here, so we talked to every day we don't we don't realize the impact, so I think in closing kyle if you can think of one thing one situation, one person that just really motivates you.

Nadine Vogel: What would the be or who would that be.

Kyle Maynard: Lately it's been my family for sure.

Kyle Maynard: which you know is i've gotten into it a lot with them actually move back to Georgia, where I grew up pre covid.  And um.

Kyle Maynard: So we spend a lot of time together.

Kyle Maynard: And i've gotten in, and you know gotten into it with them, just like.

Kyle Maynard: A lot.

Kyle Maynard: But at the same time, I really appreciate the lessons that they taught me.

Kyle Maynard: And the life and that just you know.

Kyle Maynard: kind of like we were talking about just you know being fortunate in fact of like where we're born right like you know living in America living in a place that has like accessibility has you know other resources that other places on the rest of the world don't.

Nadine Vogel:  Right.

Kyle Maynard: You know it's a really.

Kyle Maynard: Special.

Kyle Maynard: Special thing and it's the I think that, like i'm very fortunate and blessed in the family that I was born into as well, even though you know, sometimes we all get into it with with each other right.

Nadine Vogel:  Nah.

Kyle Maynard: yeah that's a.

Nadine Vogel:  Really.

Nadine Vogel: Well, I think that's that's important, and I know you know norma and for Norma and myself, we want to thank your family for giving you to us.

Kyle Maynard:  Awe. Thank you.

Nadine Vogel: You know even with all of the.

Nadine Vogel: You know inspiration you look to others, for you inspire so many and and and not and not because you have a disability, but but I mean just all of the things that you do.

Nadine Vogel: That you think you 99% of the population, they have no disabilities couldn't do it.

Norma Stanley:  That's right.

Nadine Vogel.  Right.  And I think that's why we started this this podcast because.

Nadine Vogel: Disability does matter, and I think you're a perfect example of it and we just want to thank you and your family for letting us talk with you and talk about that.

Kyle Maynard:  Absolutely.

Nadine Vogel: Actually have that real conversation so.

Nadine Vogel: I just want to say thank you and wish you the best, especially with this new the latest news you've had health news so good luck with that.

Nadine Vogel: And anytime you want to come back on the show you just let us know, but this is another episode, we are closing out of disabled lives matter, not just the podcast what is it norma.

NORMA STANLEY: It is a movement. Join us.

Nadine Vogel: It is a movement babe.

Nadine Vogel.  Alright, everybody will see you next time.

Kyle Maynard.  Bye.  Thank you guys.

NORMA STANLEY: be blessed.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S1-Ep34_Shawn_Adkins_Jonathan_Kendrick

S1-Ep34_Shawn_Adkins_Jonathan_Kendrick

October 22, 2021

Disabled Lives Matter
Season 1, Episode 34
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Shawn Adkins & Jonathan Kendrick

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

 

Nadine Vogel: Hello Hello everyone, this is nadine vogel you're host of disabled lives matter, and I am joined today by my fabulous co host norma Stanley.

NORMA STANLEY: Hi guys how you guys doing today.

Nadine Vogel: Everybody is really good I am I am just so excited because Well, first of all, as all of our listeners know.

Nadine Vogel: disabled lives matter, while it is a podcast it is much more than a podcast, it is a movement, and we want everyone to join this really important movement.

Nadine Vogel: And the way we're going to do that today is by talking with two amazing guests Jonathan kendrick and shawn adkins now jonathan i'm going to start with you, I've heard you recently referred to as a mastermind so that's a little ah I don't know if it's scary or exciting. Not really sure.

Nadine Vogel: So my understanding is that you are the founder and CEO of digital technology partners and um so just tell us a little bit about what you do and um what got you into helping individuals with disabilities.

Jonathan Kendrick: Well all right, for a couple of things there alright so i'm founder and CEO of digital technology partners, we are a I-T company that specializes in the dental industry.

Jonathan Kendrick: So we do everything from computers and networking audio video phone systems basically if it's technology inside of a dental practice we we we deal with it.

Jonathan Kendrick: The our work for Eli program, which is a division inside of digital technology partners is a e-waste recycling division and what they do is.

Jonathan Kendrick: They take all of our old technology they break it down they make sure that things go to the proper recyclers refineries and.

Jonathan Kendrick: They make sure that all of the protected health care information that comes in, on these computers gets properly destructed and provides a real service we employ adults with disabilities to.

Jonathan Kendrick: To man that department and do those services and we currently have seven adults with disabilities that work for us as employees of digital technology partners.

Nadine Vogel: very, very cool so you know interesting what one thing I thought was really fascinating when I was learning about what you guys do with dental industry, I am sure that you guys are aware, there's a

Nadine Vogel: whole industry within the dental industry that's all about caring for children with disabilities, that you know, especially with.

Nadine Vogel: developmental disabilities is a lot of issues with oral health care and there's some amazing programs we've interviewed on this show on our TV show.

Nadine Vogel: I know colgate has donated a million dollars recently to Pennsylvania, to put some research together we've had some special needs dentists on our programs.

Nadine Vogel: So I just kudos to you guys to say anything to do with this to me is like so important to the fact that you're doing this work and you employ people with disabilities, I love when things come together, you know I think it's really great.

Jonathan Kendrick: So know we get we get really excited about that too, we have a great client Dr andino for dentistry for the developmentally disabled.

Jonathan Kendrick: yeah right there in Atlanta.

Jonathan Kendrick: She is great she's awesome their their program is awesome and they are, they are solely.

Jonathan Kendrick: focused to these individuals as well.

Nadine Vogel: yeah it's that it's really important so but before I talk to shawn a little bit tell me, did you just wake up one morning and say Okay, I need to do this and in doing this, I need to employ people with disabilities or how did you come to this.

Jonathan Kendrick: That is that for shawn

Nadine Vogel: Now let's start with you, Jonathan.

 

Jonathan Kendrick:  Okay i'm sorry.

Nadine Vogel: Since you're the mastermind behind this.

Jonathan Kendrick: I heard that my apologies, I thought that you called his. name.

Jonathan Kendrick: So we in in about 2015 I was reading a book called the evolved enterprise by Yannick silver that book has that it talks about doing something more.

Jonathan Kendrick: With your company than just turning profits doing something for the greater good doing something to help people for more fulfillment than then just making profits which we.

Jonathan Kendrick: might do to be sustainable, obviously, and in reading that book some of the examples TOMS shoes, you know buy a pair of a pair a lot of different companies have.

Jonathan Kendrick: used this methodology and we were having a business issue need at that time where we're putting in all these new computers.

Jonathan Kendrick: And in the past, doctors, without me talk the way you do with these computers and I went to say you know donate them to your church give them your employees, etc, but as compliance and security regulations got.

Jonathan Kendrick: Stricter it wasn't a good answer and it wasn't an answer that we could actually give as their trusted advisor any longer.

Jonathan Kendrick: So computers were starting to stock up in our in our office and i'm reading this book and I didn't know much about e-waste, but I knew that you can't just recycle a computer, the way it was so.

Jonathan Kendrick: We were working with on a great company in Atlanta called E-cycle, we still partner with them and jeff's been great he's helped us tremendously.

Jonathan Kendrick: And I reached out to him and he was picking up our e-waste and I started learning a little bit more about it, you have to you know separate these parts, you have to.

Jonathan Kendrick: Take parts, you have to go through this process and I, you know it just hit me that you know that is something that my son Elijah could do my son Elijah.

Jonathan Kendrick: He'll be 16 he has down syndrome, he has autism, and I was trying to think about something eventually that he can do in our company if he decides to do that.

Jonathan Kendrick: When he gets old enough.

Jonathan Kendrick: And so anyway that's how the idea came came to me.

Jonathan Kendrick: And so we solved a business need a while also you know.

Jonathan Kendrick: coming up with opportunities and it.

Jonathan Kendrick: took me a couple of years in 2018 we finally got it going so.

Nadine Vogel: that's fabulous well so 2018 seems to be an important year because Sean Sean adkins that's when you joined.

Nadine Vogel: And my understanding is is.

Nadine Vogel: That you have dual roles with work for eli, which is one of the divisions and Brett works which is, I think another division that's nonprofit so, can you talk to us about your double duty yeah.

Shawn Adkins: Um, of course, thank you for having me again, I appreciate it um, so I am the programing director for the work for eli project I started in 2018.

Shawn Adkins: And when Jonathan said, there was a lot of PCs and electronic equipment in his warehouse he wasn't kidding I had a dive in that.

Shawn Adkins: headfirst trying to learn everything I possibly could about the computer just basic knowledge of what each of the pieces mean what's their worth.

Shawn Adkins: Jeff from e-cycle was very, very helpful with that and just trying to put together a plan and kind of a attack, if you will, on what his vision was and trying to take that vision and grow with that vision itself so.

Shawn Adkins: So, as he says, we employ seven we've got seven currently right now we've got 30 on a waiting list.

Nadine Vogel: wow.

Shawn Adkins: Yes. So, and with the 30 on the waiting list right now that's where we jumped in and we thought well we've got to do something for some of these individuals who are still waiting we've had.

Shawn Adkins: Our last hire that we have we he put in his resume in 2018 and we just hired him last year.

Nadine Vogel:  Oh, my Gosh.

Shawn Adkins:  Yeah so it's based off of you know, the product coming into us as much product, we can get in.

Shawn Adkins: The more we can give hours out and and help out these individuals with with a career employment and job security whatnot but so with that said.

Shawn Adkins: We began to think about what else we could do, and I think Jonathan can talk a little bit more about this.

Shawn Adkins: More in detail with the Brett works part, so I am the executive director Brett works and basically what it is, is we're bringing individuals in.

Shawn Adkins: and training them with soft skills and hard skills so we'll train them in here will train them with you know either being interviewing skills, working with others working alone.

Shawn Adkins: Even when it comes down to hey you're done with the break room let's make sure it's clean so when we actually.

Shawn Adkins: offer these positions to other employers out there after vetting these employers, you know they have a good knowledge of what's going to happen and what's going to go on within their company so.

Nadine Vogel: that's that's fabulous that that really is it's you know it just shows the.

Nadine Vogel: It just shows how aware, you are of the needs of individuals with disabilities to be employed.

Nadine Vogel: But it also shows, your recognition of their ability like anyone else to be gainfully employed right, so I think that that that's so important, so I guess one of my questions is you know.

Nadine Vogel: Obviously, I think we could go on and on about the rewards of working with adults with disabilities and certainly want to hear some of that, but can you also give us along with that some of the challenges if any of that you've experienced and this could be for either one of you.

Shawn Adkins: Well, some of the challenges that i've experienced is is I don't like to call them challenges I just like to call the learning lessons.

Nadine Vogel:  Okay.

Shawn Adkins: Basically um because every individual is different in their own way, who I work with and so you've got to sort of rethink who you're talking to as you're talking to them.

Shawn Adkins: But once you build that trust with that individual and that's, the most important thing, building the trust with them with the parents with their caregivers.

Shawn Adkins: It all comes into fruition and it's absolutely wonderful I learned every day I learned something new from them that I didn't know even about them, or about myself of what I could do.

Shawn Adkins: You know, patience is such a big virtue when it comes to this it's a huge virtue and so that's one element in my lifestyle that i've had a truly truly look at and say okay.

Shawn Adkins: Look who you're with. Look who you're dealing with, and you know let's just treat them like anybody else and that's what I do.

Shawn Adkins: I treat them like an adult by they give them we do competitive wages for them, we I give them their appraisals, I give them reviews and.

Shawn Adkins: You know it's it's it's wonderful to see that, in their eyes, because once they get that first paycheck if there's they say I know what i'm gonna do i'm going to my mother out to.

Shawn Adkins: lunch today.

Shawn Adkins: You know, with my pay check, so they are so excited you know they feel a sense of purpose and worth that a lot of people that i've seen in other companies that work.

Shawn Adkins: I would hire these guys over some of those guys any day it's amazing the work ethic.

Shawn Adkins: Their their absorption like a sponge with the knowledge that you present them and there's times, where we get some of the jonathan's texts that come back and looking for a part and they're like no no that's that's not the name of that part.

Shawn Adkins: They get they get a little school to once in a while, so that makes me feel proud that they that they learn those those different parts of it but there's so much more than just.

Shawn Adkins: The parts with the computer stuff like that it's socializing with other individuals it's building the relationships with other individuals, the team as a whole are there such great team they're.

Shawn Adkins: they're so connect with each other it's incredible how they feed off each other and how they work off each other and they're so caring and loving towards each other it's.

Shawn Adkins: it's truly amazing to see it and I always tell people if you're ever in the vicinity, please come by and see us and view that because it's incredibly awesome just so awesome.

Nadine Vogel: So norma, how do we clone these guys.

NORMA STANLEY: yeah right.

NORMA STANLEY: I know I I had an opportunity to go to the ribbon cutting services yep not too long ago, and it was so beautiful and yeah I love the idea I love the concept of what you're trying to do particularly trying to.

NORMA STANLEY: You know, make sure that other companies can can experience the the luxury and the abilities that our family members have people with disabilities have.

NORMA STANLEY: And just really get as many of our people employed as possible, so I think it's a beautiful thing, so this is one of the reasons why I said y'all gotta be on the show.

Nadine Vogel: No absolutely I you know and it's it's disheartening in some ways, you know that there's a waiting list, but you know I found that.

Nadine Vogel: For anything that's really worthwhile anything it's really good out there for people with just in general, but people with disabilities in particular there always seems to be that waiting list.

Nadine Vogel: right here it's not immediate because there's not enough of y'all doing this around the country, and you know, Jonathan obviously like you said you know your son.

Nadine Vogel: Elijah was you know the impetus to this and, in many ways, but you know it doesn't have to be right, it could be, because someone's working now with someone side by side, who has a disability that says wow there's so much more we could be doing right.

Nadine Vogel: I just I just love this and and i'm serious we need to figure out how to clone you guys.

Nadine Vogel: yeah well so i'm gonna we're gonna go on commercial break and so you guys think about cloning, while we're on break.

Nadine Vogel: we'll be back in just a minute, and then you know I wanna I want to hear from you guys a little bit about.

Nadine Vogel: You know what do you think people should know about working side by side with someone with a disability, because they think there's a lot of fear.

Nadine Vogel: There's bias raises me people trying to be mean but just didn't ever had that experience before so you know Shawn you gave us these really great examples of how wonderful it is.

Nadine Vogel: From a company perspective and how it benefits the individual, and I do agree with you, I think everyone everyone, no matter who they are, what their disability is has a right to work.

Nadine Vogel: Right has the right to be gainfully employed have their own money for housing for social for whatever it is, so I have major issues with that.

Nadine Vogel: So when we come back from break i'd love to hear what you guys think about how do we, how do we convert this so people really start getting comfortable right so stay tuned everybody, we will be back with Shawn and Jonathan and Norma in just a minute.

Jonathan Kendrick: Thank you.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: Well welcome back everyone to the second half of today's episode of disabled lives matter more than just a podcast we are a movement.

Nadine Vogel: And we are talking today to Sean Atkins and Jonathan kendrick about digital technology partners, and specifically two Divisions that they have workfor eli and Brett works which is about employing adults with disabilities and norma take it away they're just doing such amazing things.

NORMA STANLEY: yeah you guys are doing some amazing work, and I am just really excited about what I saw at the new facility so tell us you know your perspectives about and tell other people who are listening, or when listen what it's like working with people with disabilities and they need to know.

Jonathan Kendrick: So i'll i'll start now i'm gonna lead shawn and carry on on, but that is part of so and I want to clarify a little bit so Brett works is the the nonprofit side. That we are just starting.

Nadine Vogel: Right. Right.

Jonathan Kendrick: And Brett works came along, because of our long waiting list you know 30 people waiting some for three years and it was how do we get people off this list, how do we get people moving, and how do we start you know.

Jonathan Kendrick: providing services to some of these individuals that have been waiting for so long, and so we brought the nonprofit as as a way to.

Jonathan Kendrick: raise some funds get people working and start educating employers other employers about the successes that we've had, which is exactly what you're.

Jonathan Kendrick: I think coming around to ask us norma and you know what what other employers i'm going to speak from the employer side of it and i'll let Shawn speak from.

Jonathan Kendrick: The working with the individuals themselves side or aspect of it, but what I would want other employers to know is, you know we always hear this what's the risk what's the production like gonna be like, and you know calm down. You know.

Jonathan Kendrick: Here's the thing, most of these individuals are not looking for 40 hours a week.

Jonathan Kendrick: The first of all, so that's the that's the first I don't know that I have a job, you know that I can really give someone 40 hours a week well guess what most of them don't want 40 hours a week.

Nadine Vogel:  Right.

Jonathan Kendrick: Most of ours work two to three days a week, and we, and the reason why Brett works is so so good for us right now is because we have.

Jonathan Kendrick: Three years of experience of doing this in our own company, so far, so we've learned a lot.

Jonathan Kendrick: So we as we brought on individuals, first we brought two and then we started expanding the hours and we started offering or or trying to offer more and what we found is that these individuals also have sometimes other commitments.

Jonathan Kendrick: They have to have their own you know they have to provide their own transportation to work so sometimes caregivers can't bring someone five days a week.

Nadine Vogel: Right. 

Jonathan Kendrick: But but. Those individuals still look very, very forward to coming to three days a week, for you know four or five hours a day.

Jonathan Kendrick: And it gives them that purpose of what they're looking for so that would be the first thing I would tell.

Jonathan Kendrick: An employer and part of our other part of what Brett works is going to be doing is like I said educating these employers.

Jonathan Kendrick: The other big key successes, the supportive system that you put behind them, so when employee employees come to work inside your facility and i'm gonna let.

Jonathan Kendrick: You know Shawn go on about all the benefits that you're going to get from it, because you will it's been amazing for our culture.

Jonathan Kendrick: Is it's just making sure that you're setting up a proper support structure inside that's going to allow that person to be successful at at that job and then, finally, I would say, keep an open mind.

Jonathan Kendrick: there's you have to sort of look around, I mean it's kind of like what I did on our e-waste.

Jonathan Kendrick: issue or problem, and you know I solved it with creating this division for for adults with disabilities but there's all kinds of things that can be done in the workplace.

Jonathan Kendrick: And when you really start thinking okay I don't have to solve a 40 hour problem I can solve, whatever hour problem there's a lot more opportunities that you can you can go look at, and as long as you have.

Jonathan Kendrick: The will the the the you know the desire for these people to really come in and help and then see all the benefits that we've seen there's just a ton of opportunities, all over the place, I think everyone wanted to know.

Nadine Vogel:  What I think you're saying Jonathan is that now we've talked to a lot of smaller businesses and they think oh that's for the really large companies.

Nadine Vogel: Just those are the global companies.

Nadine Vogel: That can do that, and I think what you're what you're showing clearly is that no this can be for midsize it can be for small businesses opportunities everywhere.

Nadine Vogel: And i'm just so glad to hear you talk about that because I hear that a lot only do we only have you know 15 employees 100 employees whatever we're not Coca Cola, you know another big company and it's always I scratch my head i'm like well, what does that have to do with anything.

Jonathan Kendrick: It really doesn't.

Nadine Vogel: So yeah so i'm glad that you address that because that fear factor as you know for anybody is big Shawn anything you want to add to that.

Shawn Adkins: yeah I do when he was talking about setting them up for success that's my biggest proponent of doing that.

Shawn Adkins: So every morning I send all of them an email and their caregivers and their parents, let them know what their goals are for the day.

Shawn Adkins: And they're realistic goals and sometimes we have competitions with these goals, just to have it a little bit fun.

Shawn Adkins: But I want them to know, and I want them to know that what they're going to be doing for the day so they're ready to go for that day.

Shawn Adkins: You know, and the parents know about it so they're excited to know okay so so and so's going to break down 15 PCs today, you know that's it that's their goal.

Shawn Adkins: If they don't hit their goal, then we talked about it, they say, well why didn't you hit it was there something going on, was it something wrong, you know and.

Shawn Adkins: And usually it's just like no I just had a hard time with this one PC and that's okay that's cool and then at the end of the day, i'll send off a note to all the parents saying this is what they did this is how they hit their goal.

Shawn Adkins: These are the things that we're going to work on going in the future, you know if you guys have any opinions or any sort of.

Shawn Adkins: Special thoughts that you can give me to to handle some of this please feel free to do so because i'm very open to suggestions.

Shawn Adkins: that's why I always want the parents and the caregivers always involved with me, I always make them involved with everything, because I know them.

Shawn Adkins: I try to know them, as well as they know them, but they might know a certain trick that I could use.

Shawn Adkins: To get them to work instead of me trying to figure out and get frustrated by it you know so it's.

Nadine Vogel: Got it.

Shawn Adkins: It's a blessing that we've had these individuals and like Jonathan was saying, I wish a lot more people were out there, educated by this, if you look right now there are so many job openings right now that nobody wants to go to work.

Nadine Vogel: Right.

Shawn Adkins: Look at that. Perfect example.

Shawn Adkins: These individuals can go in there and and work these jobs even being it, you know four hours two hours three hours.

Nadine Vogel: Yeah absolutely.

Shawn Adkins: love it, I mean there's times, where I got to tell my people to quit working.

Nadine Vogel:  Yeah.

Shawn Adkins: Because they just keep going and going.

Nadine Vogel: Work ethic.

Shawn Adkins: yeah. exactly.

Shawn Adkins: Oh it's so strong they come in early they leave right at their time they're supposed leave they know when so I gotta put clocks around the whole building and just so they know what time it is so they know is that time for them to go, you know we do the countdown process.

Nadine Vogel: You think about that that's like a dream employee right for any employer is the one that wants to stay to have that work ethic.

Nadine Vogel: um but then you know a lot of employers aren't connecting the dots right the way you are.

Nadine Vogel: But you know the other thing that you said shawn that just struck me as you're describing you know what you're doing I thought well at the end of the day, you may approach it a little bit differently, but it's performance management.

Nadine Vogel: I know we all do it all organizations its performance management, and you know you take it to a more granular level, you know daily, which is sometimes I think even people that don't have disabilities. could use that.

NORMA STANLEY: That's right.

Nadine Vogel: Right.  But, but something I do oh God we just have a couple minutes left, but something that you touched on that I really want to make sure we address before we before we end today, you mentioned engaging with the parents.

NORMA STANLEY: Oh yeah.

Nadine Vogel: So obviously these are individuals with intellectual or developmental disabilities these are not you know college graduates with disabilities things like that.

Nadine Vogel: But I have spoken and have worked with so many companies where that is actually what they fear the most.

Nadine Vogel: They say you know I don't want to have to deal with the parent, I mean i'm dealing with the employee and now i'll probably have to deal, maybe with a job coach.

Nadine Vogel: Or the parents and then, what happens if the parents want to get involved to ask questions, and you know get involved in the way i'm managing performance and I find that that's.

Nadine Vogel: that's one of those scary pile things for for a lot of folks so I just like you know, in the minute or two that we have left, could you touch on that.

Shawn Adkins: yeah i'd be more than happy to yeah.

Shawn Adkins: You know, for those individuals those naysayers out there, think they got to deal with them it's it's it's the best book that you can actually read is through them.

Shawn Adkins: It really is, I mean there's management books out there there's all kinds of books that you can read about managing about performance about skills about training about all that kind of stuff.

Shawn Adkins: But to get to know the person and to get to know them well you get to know them you get to know the parents and get the caregivers.

Shawn Adkins: it's not a big deal to talk with the parents and i'll be honest, I love talking with them, because they need to know i've had some individuals who come in for interviews are nervous because they're like well I don't want my my kid to be.

Shawn Adkins: You know, taken advantage of or you know stuff like that so i've got to say insurance i'm always talking to you guys, you know exactly what's going on, I incorporate them into all the parties in conference calls in everyting.

Shawn Adkins: they're still they're actually the parents and the caregivers are my secondary team.

Nadine Vogel: [Laughter.]

Shawn Adkins: You know without them, I wouldn't be successful with who they gave me to work with, which is also.

NORMA STANLEY: In this successful engagement and it's part of our culture, we have to be a part of what our children are doing.

NORMA STANLEY: Exactly I mean that's just the way we are as parents of children.

NORMA STANLEY: Just like that so.

Nadine Vogel: Then, and you know what I you know.

Nadine Vogel: And i'm even my older daughter, you know she's a college graduate but she has significant disabilities will have lifelong disabilities.

Nadine Vogel: And because of that, I have the same concerns right, even though she's independent lives independently, some of the same concerns that norma that you have to Sierra.

Nadine Vogel: Right even could Sierra can't communicate, I still have for for my daughter, and so I you know I can tell you both that you know you're talking with two special needs parents have adult daughters and you are just singing our song.

Jonathan Kendrick: It's a very collaborative.

Jonathan Kendrick: Environment right so and and we have so much to learn, you know and in to because we have seven every individual is so different.

Jonathan Kendrick: Why why start from the very beginning of trying to learn what we were doing and also learn that that that person may learn so much from their families.

Nadine Vogel: So just imagine is would be really controversial.

Nadine Vogel: But just imagine if we did that, for all employees that maybe we engaged with the parent.

Nadine Vogel: Or engaged with this spouse, you know when I was in corporate i'll tell you, you know 100 years ago when I interviewed someone, especially if it involves like a relocation, or something that was going to be major life impacting.

Nadine Vogel: I always interviewed spouse as well, and it was really not so much for me to ask them questions, but for them to ask me questions.

Nadine Vogel: Especially if they were going to be relocating and if they were a military spouse things where that job was going to impact them as well.

Nadine Vogel: I was not exactly the most popular girl in the world, and you know when I did that but.

Nadine Vogel: You know just hearing what you guys do it Shawn specifically how you engage with the families it's just takes me back to that and things.

Nadine Vogel: You know Johnny what you just said it's helpful because you know more about this individual is so, you know again i'm not even sure if that would be legal today to do but i'm.

Nadine Vogel: Putting it out there, because I do think it works.

Nadine Vogel: yeah so oh my gosh I cannot believe a half hour has just flown we are out of time, I feel like I could talk to you guys for like another few hours um norma Thank you so much.

NORMA STANLEY: i'm excited i'm so thankful that they were available.

NORMA STANLEY: To be a part of this.

Nadine Vogel: Well, I know that our listeners are going to just love hearing about this.

Nadine Vogel: Now, if they are a small business owner and they're thinking, I wanted to what you guys are doing, who should they contact and how.

Jonathan Kendrick: I would say, go to workforeli.com and put in a request.

Jonathan Kendrick: We have two different forms, we have one for pickups and we also have one for applications.

Jonathan Kendrick: You can you can email me at Jonathan@DTpartners.COM, you can email Shawn.Adkins@dtpartners.COM email us both we'd love to talk to any business owner honestly and help in any way we can.

Nadine Vogel: Well that's that's great, and I would like to say, and if we have someone to disability looking for a job, but that's going to give you more of a waiting list.

Nadine Vogel: But you just did just give me a forum, so if there is someone out there and they're in the area, again, maybe they can apply, you may have to create another organization.

NORMA STANLEY: And there may be some companies that.

NORMA STANLEY: would want to. just get some.

NORMA STANLEY: Helpful advice from you.

Nadine Vogel: Exactly, that's what I'm thinking.  You know, might be like hey we would love to do this, but we've been struggling with how wouldn't that be amazing.

Nadine Vogel: So with that I just want to say thank you so much Shawn and Jonathan, we wish you and all of your employees the very, very best.

Nadine Vogel: And for our listeners, we hope you enjoyed today's show, and we want to thank you and we will see you on another episode of disabled lives matter more than a podcast it's a movement right norma.

NORMA STANLEY: absolutely. my best to everyone.

Nadine Vogel: All right, bye guys.

Shawn Adkins: Thank you. 

Jonathan Kendrick: Bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S1-Ep33_Levi_Miller

S1-Ep33_Levi_Miller

October 14, 2021

Disabled Lives Matter
Season 1, Episode 33
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Levi Miller

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

 

Nadine Vogel: Hello Hello everyone, this is nadine vogel your co host of disabled lives matter and, of course, as always, I am joined by my co host the amazing norma Stanley hey norma.

NORMA STANLEY: How are you guys doing.

Nadine Vogel: Good how are you doing today.

NORMA STANLEY: I'm great Thank you.

Nadine Vogel: Oh good. Well i'm just wondering if you would like to open our interview, today we have this amazing person joining us he's a teacher a speaker a strategist oh my gosh so many roles so i'm gonna let you take it away norma and then we'll go from there.

NORMA STANLEY: Well, Mister Levi Miller, who is going to be speaking with us today and sharing his expertise is he's an entrepreneur, and he actually is a former.

NORMA STANLEY: promoter in the radio industry and entertainment industry, and he has a construction company and he's going to tell us all about all he does, but he works, a lot with disabled veterans on employment, so thank you for being a part of disabled lives matter today, Mr Miller.

Levi Miller: Well, thank you for having me on their norma and nadine.  I'm glad to be on.

NORMA STANLEY: I am thankful that you had some time to participate, this year, this year, this and this show because we Bob is a busy the years gone by, so fast I can't believe it's October.

NORMA STANLEY: But you know I had a couple of conversations and I was really, really excited about learning how how you work, particularly with disabled veterans and your construction company, can you tell us a little bit about what that's all about.

Levi Miller: OK, firstly like you said i'm a disabled veteran a Vietnam veteran.

Levi Miller: Oh well, you know I ptsd so you have ptsd 100% disability and I always like to do something of my brothers and sisters well you know, a call them, from having been in the military.

Levi Miller: And always try to find a way to help them you know, especially the homeless vet.

Levi Miller: Because a lot of homeless vet is you know a lot of people say well you know they can do better, and this and that but.

Levi Miller: A lot of time, you know they can't find a job they had no medical insurance ad they go into bankruptcy with their family, so I, and I will try to find a way to try to help my brothers and sisters.

Levi Miller: So what I started doing first I started going to my American legion the vfw learn how to fill out claims, so I help other vendors to fill out their claims, you know with no charge at all, you know get them back on track.

Levi Miller: Uh. my company my radio station, which is WLMRDB radio, which I have a veteran show on there.

Levi Miller: And what we do, we will raise money on our veterans show, and we are like during the winter time, we will take blankets to the homeless veteran last year we acquired like 550 blankets.

Nadine Vogel:  Wos.

Levi Miller: And you know we gave it to the immediate family and we try to supply them with food, you know we'll use our 501 C 3 to go to you know places to like Krogers, where you know grocery stores and get them food.

Levi Miller: And after that we opened up construction company which called right real metal construction and what we do that construction company, we hire veterans and then we also teach them we give them free training course, you know how to get into the construction business and.

Levi Miller: And our next goal is to be build one house a year and give it to a veteran and give to a veteran and his family.  

NORMA STANLEY: That's awesome.

Levi Miller: So. that's what we're working real hard on.

NORMA STANLEY: That is such a sad thing, where you see people who have served our country and they don't get an opportunity to.

NORMA STANLEY: Come back and and live decent lives that they're you know became disabled mostly likely because of the war or whatever they were doing you were part of the Vietnam War.

Levi Miller: Yes

NORMA STANLEY: And they come back and they have no help and I just don't understand you said you're dealing with ptsd I know a few people who are dealing with that who are in the Vietnam.

NORMA STANLEY: War so.

NORMA STANLEY: How do you get people to understand that not it's not necessarily these people want to be in a situation of need it's just that the system failed them.

Levi Miller: Yes, navy was kind of the Vietnam veteran was kind of thrown away oh.

Levi Miller: You know, we throw it away.

Levi Miller: We have some awkward traits, you know, but we kind of throw it away can just imagine you and nadine, just, imagine you in the jungle fighting for 13 months, and then the next day you on the street, you know no rehab  or nothing there was no jobs for us, we was called baby killers we were call rapists.

Levi Miller: They say about everybody in Vietnam, you know, they was on drugs.

Levi Miller: Now Oh, excuse me if I break up you know sometime I break up when I talk about it.

Levi Miller: You know, it was a rough life if you apply for a job, like when I came out, I was like let him come back you know, I was the infantry oh I go file for a police job, they said no, you know you infantry you can't be trained no more.  you see what i'm saying they don't want to take a chance, with us.

Nadine Vogel: Well it's bias right it's bias at its core.

Nadine Vogel: Yes, Norma and I talk about it all the time.

Nadine Vogel: Right, you know implicit bias and and and that's a perfect example of it, and you know levi I would love to know your your thoughts because.

Nadine Vogel: You know today and in today's current wars, more and more men and women come back disabled than before, because many years ago, you know people would die in the field.

Nadine Vogel: Today you have a different medical technology that they're coming back and but coming back more with disabilities, whether it's post traumatic stress or amputee or something so.

Nadine Vogel: what's your perspective on how you think that's changed and how you think some of that bias, perhaps has changed if it's changed at all.

Levi Miller: Well, I think it changed a little bit nadine because these soldiers to get out now they have to go through maybe six six months or more, you know be deprogrammed whereas us Vietnam veterans we come back 13 months fighting and they throw you on the street and your brain your brain don't work like that.

Levi Miller: yeah so you know you don't have a lot you don't have a lot of problems and a lot of problems when I came out.

Levi Miller: Oh, I never did do drugs in the service but I guess about 80% of you know, we did they did do drugs in a service, but I have a lot of problem.

Levi Miller: When I came home I couldn't get along with anybody, I listen to my family or wife you know I could talk to them, but other people I couldn't I couldn't relate to I couldn't relate to at all.

Levi Miller: And I didn't start telling my experience, until maybe about three years ago, because I was told shut up don't say anything.

Levi Miller: And I know when I first got out I did a lot of classfied stuff I couldn't even talk to a psychologist when I came out.

Nadine Vogel:  Wow.

Levi Miller: You know, unless I got locked up, I think they lifted, that in 1986 

Nadine Vogel:  Wow. 

Levi Miller: I was in places that that the United States said we wasn't there, but we was there.

Levi Miller: Oh, you know it would just a mess I was sitting up at night in my bedroom with my first wife and stood up all night, all we thought was that the enemy was coming through I wouldn't get no sleep.

Levi Miller: Oh.

Levi Miller: My wife my well my wife now especially her, she helped she helped of other women's that their husband have been in the service with ptsd she she's a counselor so she teach them.

Levi Miller: But we put our wives through a lot of lot of I'm telling ya lot of trouble anger and a lot of trouble, you know, to try to understand us.

Nadine Vogel: Right right so so from what I hear then you're feeling like you know because of what the military is doing today.

Nadine Vogel: To help transition make that transition somewhat easier um that probably isn't as much bias, but i'm curious if we drill down further specifically to service disabled veterans today, 

Levi Miller: Yes

Nadine Vogel: What's your perspective on that.

Levi Miller: well.

Levi Miller: We we we disabled veterans, we need better job we need more training Oh, we need better health care because i'm gonna tell you something a lot of soldiers that went to Vietnam into regular army, we can go to the V-A the V-A won't tell us tell us what kind of benefits we got.

Norma Stanley:  I've heard that.

Levi Miller: Yeah i'm the reason I got my ID I had to go through Congress, I had to get me a lawyer, because I was turn down probably about four times.

Levi Miller: um I was infected with Agent Orange, which was a chemical.

Levi Miller: Oh it's do like 21 diseases, I got 11 out of them.

Nadine Vogel: Oh, my gosh.

Norma Stanley:  Wow.

Levi Miller: I know when I first went to the doctor, you know ahead of me paying my medical bill and some medication maybe pay $500 a month.

Nadine Vogel: Oh, my gosh.

Levi Miller: Then my lawyer in Congress said no you fought in the war, you know your stuff should be free.

Nadine Vogel:  Right.

Levi Miller: But you got to tell the V-A you go down there V-A not gonna tell you nothing and not going to tell you anything, you got to know that you got to tell them.

Nadine Vogel:  Right. Right.  Now, of course, if we.

Nadine Vogel: haven't veteran who's now working in private sector, then you know more than likely they would have their group health insurance, you know, through their employer and i'm assuming that would help dramatically.

Levi Miller: Yes, you can remember like agent orange the United States didn't claim agent orange until 2002 most most of Vietnam veterans was like 65 to 75 

Nadine Vogel:  Right.

Levi Miller: And we put our claim in what they do, they tried, but most of the fellas had died you know waiting on their claim 10, 15 years, 20 years.

Nadine Vogel:  Uh hm.

Levi Miller: years.

Levi Miller: You know so.

Nadine Vogel: Right.

Levi Miller: And what they try to do the soldiers, they they try to get them to to be able to submit a little quicker.

Levi Miller: But you know they they catch a lot they catch a lot of trouble too they not getting their medical like they supposed to.

Nadine Vogel: Right  right well Levi you know before we had this interview.

Nadine Vogel: Norma was sharing with me all of the amazing things that that you've done with your life as a result of these experiences.

Nadine Vogel: To to benefit others, and you know you start talking about other veterans and what you're doing there.

Nadine Vogel: But to me but to me what you are doing is a ministry right, it is a ministry for people.

NORMA STANLEY: It is absolutely a ministry it's important because so many of out vets are not getting the help.

Levi Miller:  That's right.

NORMA STANLEY: But what he's doing is a ministry absolutely.

Nadine Vogel: Right right exactly, and I think that that is critical critical to having the success that you're having. You know.

Nadine Vogel: I need to go on break, but when we come back I do want to talk about that because.

Levi Miller: Yes, I'll talk.

Nadine Vogel: Because I think that you know when we say ministry people immediately think religion right.

Nadine Vogel: But, but I think that what you're doing has the same impact.

Nadine Vogel: Right. To these veterans to these service disabled veterans and their families, and I just I want to talk about that because.

Nadine Vogel: For norma and myself, and we work quite a bit with veterans with service disabled veterans, especially within corporate America.

Nadine Vogel: And i'd love to talk a little bit more about that as well about you know the impact of that so let's go to commercial break and everybody stay tuned don't go anywhere, we will come back this is nadine vogel with norma Stanley and our guest today, Levi Miller.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Well Hello everyone welcome back to today's episode of disabled lives matter and don't forget it's more than a podcast, it is a movement.

Nadine Vogel: And part of today's movement is talking with our guest Levi Miller and i'm going to turn it back over to norma to continue this amazing conversation.

NORMA STANLEY: Well, thanks, and I just wanted to bring up the fact that levi's you know I guess determination to overcome.

NORMA STANLEY: Led to him doing a lot of amazing things, including starting this company that helped to employ people with disabilities to also a part of the entertainment industry at some point.

NORMA STANLEY: and doing some things in that area before you got into radio so tell us a little bit about that really quickly and we can get back to seeing how you how it led to what you're doing now.

Levi Miller: Okay. The first thing I'd like I say though I love you all, and I know all my veteran brothers and sisters love you all for what you all doing.

Levi Miller: Oh there's not many people that give us, you know talk to us give us help back, we need that most of all so your program I love it, you know I love what you all doing.

Levi Miller: And then start talking about what I was doing I had really bad ptsd like to 2013 of about five operation and it put me in a very depressing mood very depressed.

Levi Miller: ah you know, looking at the ceiling all day not wanting to talk anybody about it, nor do anything and then my wife and a good friend of mine.

Levi Miller: They would tell me say.

Levi Miller: That my wife told me so you need to go on radio, you need to start talking about about the veterans.

Levi Miller: She demand me, you know how you ladies, are you you all demand it, and we have to do it.

Norma Stanley:  We're persuasive.

Levi Miller: And, as I got started, I told I don't want do no radio leave alone talking about radio, then she said, you could open a veterans show you could talk about some of the problems you having and you know I got into that and now I love it I won't leave it.

Levi Miller: Uh cause now I get you know, to express to us soldiers you know our brothers and sisters what to do, how to go about doin' it and everything.

Levi Miller: So we built a platform, we got who WLMRDB show we reach veterans.

Levi Miller: All over the United States and overseas.

Levi Miller: Uh, you know, with past soldiers you know from the days back when I was in and future soldiers, that is what we're doing now, and so we do all of that, and it is very satisfying to me to knowing that I can you know you know when they disabled, knowing that I can be some help.

Levi Miller: Because you don't see help, like this, you know, or we don't get many programs, you know, like you and norma got nadine, so you know this, you know this this this really help us.

NORMA STANLEY: Well you know my step son was in the military and he served in Kuwait and then he came back, he would tell me that you know he always slept with one eye open.

NORMA STANLEY: And you know, because there were always bombs going off, you know they always had to be ready to go he's a 42 years old, now, and I know he's dealing with ptsd.

Levi Miller: He do.

NORMA STANLEY: From that experience he wasn't in an actual war but whatever he had to do, when he was in Iran  Kuwait area it affected him and it's still affecting him.

NORMA STANLEY: and his life, right now, and so you're like you're saying it's important for them to get the information that they need, so that they can.

NORMA STANLEY: reclaim their lives because whatever they dealt with and wherever they saw it, it really mess with them mentally which is you know causes them mental illness in some capacity that's not diagnosed in many cases.

Levi Miller: Right and I guarantee you he have ptsd I can guarantee that.

Levi Miller: Even, if they go through training of basic training he I-T, you know you start picking up stuff then because you know they drill you to be brainwashed and then you see some stuff or you know some stuff happening that you know that's really not real you know, but you have to go through all of it.

Levi Miller: Yes, you know you go to war just being in the service, you will get that ptsd.

Norma Stanley:  Yeah they see stuff we don't hear about on the news.

Levi Miller: Shell shock. They used to say shell shock.

Levi Miller: Before they came to ptsd.

NORMA STANLEY: yeah yeah they can't talk about everything that's actually being seen experienced um with by by some of these soldiers male and female so it's a real issue.

NORMA STANLEY: it's a real issue, and so you know.

NORMA STANLEY: kudos to what you're trying to do at least to.

NORMA STANLEY: not become homeless or if they are homeless aleast find a way to make some money that they can you know take care of themselves and their families.

NORMA STANLEY: So kudos to you and your company construction company that's been doing that. You say it's a non profit your. Construction company.

Levi Miller: We have a nonprofit that what we do with that nonprofit we take entertainment shows to military bases.

Levi Miller: Or we may take them uh my wife, has a more people ptsd counselor or we may put on an entertainment show there.

Nadine Vogel:  Oh wow.

Levi Miller: We may take stage plays to bases.

Levi Miller: We haven't had a trip to go overseas yet so we working on that process.

Levi Miller: But uh we do all of that, because I have another company too like a Boomer TV on roku devices.

Levi Miller: Oh, I have shows there entertainment shows there I have veterans

Levi Miller: Stories on there also too.

Nadine Vogel: i'm curious of the individuals that you employ and work with what percentage would you say have service related disabilities and then of that you know how is that different for you way what, what do you find as an employer, if anything, you need to do differently.

Levi Miller: I need to help more than what i've done.  You know I don't ever feel like i'm doing I don't feel like i'm doing enough.

Nadine Vogel:  Right.

Levi Miller: hey hey you know that the feeling I have because God bless me, you know the old comradery this, you know.

Levi Miller: stuff and stuff like that and i'm Like you, I like to give back and when we get back 

Nadine Vogel: Right.

Levi Miller:  You know I don't I don't want to be the spotlight the limelight I just want to give back.

Nadine Vogel: Right right and I completely get that from everything that you have shared with us, but i'm just curious as an employer, what do you find that you may need to do differently.

Nadine Vogel: Or that or how the experience the work experience is different.

Nadine Vogel: If the if the veteran has a disability or not, um then obviously different yet if it's visible or invisible.

Levi Miller: Yes, well, with you know veteran disability, you know I do a lot of talking with them, I try to be more than an employer I try to be their best friend.

Levi Miller: We call it war buddies.

Levi Miller: yeah yeah and um you know if you call me today, you need help and I got it i'm gonna help you that that's you know that's they way we do it.

Levi Miller: And I find that I build a better relationship and they know where i'm coming from because you know.

Levi Miller: They don't you know they got it and they know exactly where i'm coming from and we can kind of relate a little bit more closer you know when you've been there you've talked to somebody there you can become closer, because a lot of soldiers, they won't talk to you.

Levi Miller: Ah.

Levi Miller: Unless you know you've been in the military.

Levi Miller: I see the reason for that like when I came out, we talked to other people then they'll laugh you know.

Levi Miller: don't believe you know don't believe what we tell them then we give upset, so we wanna hurt people.

Levi Miller: So yeah oh it was drastic yeah.

NORMA STANLEY: Well like I said, the little bit i've seen just observing my stepson I know there's some situations that he needs to talk about and he won't.

NORMA STANLEY: And he won't so that's just reality.

Levi Miller: I heard of it, we need that we really need to talk about it that's why I say yo show you know the few other show that's what you all do cause us veterans, we need to talk about cause the longer we keep it in us it's just gonna get worse.

Levi Miller: And I learned that.

Nadine Vogel: And do you do you feel I mean Covid lets us, you know we're all dealing with covid now do you feel like covid is having.

Nadine Vogel: A greater impact um in any way for veterans than than the rest of us, I mean obviously everybody's talking about how they're experiencing anxiety and depression, you know so many things with the ambiguity.

Levi Miller: Right.

Nadine Vogel: Of what's happening, but i'm just wondering from your perspective and the vets you work with if you think that is a different hit on them, for some reason.

Levi Miller: Yes, I think, so too, because a lot of veterans can't get no healthcare they get sick, they can't go to the hospital aw.

Levi Miller: You know it's a lot going on, but as for me covid didn't really mess with me to much because I stay in the House anyway.

Levi Miller: So.

Levi Miller: I stay in the house, you know doing what I got to do.

Levi Miller: A know some that it did hurt a lot of people couldn't find no job and they was scared to find jobs all the veterans not getting, you know they fight like hell, excuse the cursing, to get that money you know, to support them and their family.

Levi Miller: And I know it did hurt a lot of love people to also to about not getting out and work that people are scared to go out.

Levi Miller: You know, they get sick because they don't have they don't have the money, you know they don't have the money.

Norma Stanley:  Yeah.

Levi Miller: You know, and when you got a family.

Levi Miller: You know, that's another thing, you know you can't support your family's especially the disabled veteran that do a lot to us to.

Levi Miller: You know that, do a lot to us too that we can support our family.

Nadine Vogel: Right.

Levi Miller: You know I got lucky, I sent.

Levi Miller: Uh two my daughters to college and paid for.  You know by the settlement that I got one of them is a doctor now one is a dental hygienists.

Nadine Vogel: Wow.

 

Levi Miller: And you know and they doing very good.

Nadine Vogel: Good.

Levi Miller: But a lot us you know, the veterans when they do get the money from the V-A or get their claim a lot of you know, spend it all on drugs well you know.

NORMA STANLEY: that's that's where their minds are.

Levi Miller: Right, because you try to do anything with to get your

Levi Miller: Mind off that depression, and you know, and everything else.  So you do you do anything that you know they take drugs because you're trying to get rid of the pain that they have.

Nadine Vogel: Right right and that's you know we we have at springboard we have a whole practice around mental health and and one of the things you know we tell folks is that you know you don't see mental health issues right.

Nadine Vogel: it's emotions feelings we don't see feelings and thoughts.

Levi Miller: No.

Nadine Vogel: It's important. Right. It's just a important to address as the physical disabilities, but unfortunately society still has a stigma.

Nadine Vogel: I think with that, and so, then that adds to that stigma that really you're talking about you know coming back from war, and I not getting support it's just you know it's something that I think has improved a lot over the years, but hasn't gone away at all.

Levi Miller: Right right.

Levi Miller: And let me tell you something funny here, maybe two years ago.

Levi Miller: I applied for a scooter.

Levi Miller: You know they wouldn't give me a scooter.

Levi Miller: I couldn't believe what the lady say at the V-A I thought they're gonna lock me up.

Levi Miller: And then later finally told me she go give me my scooter.

Levi Miller: And you know, like, I told her you healthy, you can walk around with your husband you can go anywhere way you want to go.

Nadine Vogel: Right.

Levi Miller: You know I I can't barely go anywhere you go to walmart and you have to wait on a scooter.

Nadine Vogel: Oh, my.

Levi Miller: And I just went off, I went off.

Nadine Vogel: Oh, my gosh.

Norma Stanley.  Wow.

Nadine Vogel: You know, you know we have to be kind to one another, I don't care what the situation is, you know I think first and foremost, people have to just learn how to be kind.

Levi Miller: Right.

Nadine Vogel: Right. Cause it's comments like that are not kind any way, shape or form and imagine if Levi, you know you when she said that to you, you are actively experiencing mental health issues.

Nadine Vogel: That could have easly escalated right.

Levi Miller: Yes.

Nadine Vogel.  And some people don't understand for some reason.

Levi Miller: And it happens us at the V-A there is a lot of us, you know that escalate and you could wind up in the hospital right, you know it can it can get rough at times.

Nadine Vogel:  I bet it can.

Levi Miller: There's a lot of personnel there.

Levi Miller: That never been in the service.

Nadine Vogel: Right.

Levi Miller: Well and most of them don't even know about Agent Orange for the older veteran.

Nadine Vogel: Right right.

Levi Miller: I was lucky.  You counsel them, you don't know, even know.

Levi Miller: You need to know what this, solider went through.

Nadine Vogel: Right right. Absolutely. 

Levi Miller: You know to talk to them any kinda way, it don't work. No.

Nadine Vogel: Oh, my goodness, I you know I hate to say this, but we are out of time I cannot believe this half hour has flown.

Nadine Vogel: I looked at the clock and was like where did that time go. oh my gosh Levi think you so much for sharing your story.

Levi Miller:  Okay.

Nadine Vogel: Your personal passion and mission and ministry to work with help support and encourage veterans and especially veterans with service disabilities, we are so appreciative of what you do.

Levi Miller:  Okay.

Nadine Vogel: And appreciate you sharing your story.

Nadine Vogel: norma Thank you.

Nadine Vogel: Thank you for bringing Levi to us.

Levi Miller:  Okay. May I say this before I leave.

Nadine Vogel: Yeah please.

Levi Miller: You all were so easy to talk to.

Levi Miller: If I had people like you talk to me like you talking to a back in.

Levi Miller: Back in the day I would have been a lot better.

Levi Miller: And you know.

Levi Miller: I say that from my heart. I got tears in my eyes now. I say thing from my heart.

Nadine Vogel: Thank you Levi it was an absolute.

Nadine Vogel: Pleasure, and I know that our listeners are going to feel exactly the same way so with that norma my God it's another episode of disabled lives matter remember it's more than a podcast it.

Nadine Vogel: it's a movement, and we need you all to join the movement so until next time bye everybody.

NORMA STANLEY: Have a blessed one, bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

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