Disabled Lives Matter
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!

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-Ep32_Lioned_Woodyard

S1-Ep32_Lioned_Woodyard

October 7, 2021

Disabled Lives Matter
Season 1, Episode 32
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Lionel Woodyard

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 I am nadine vogel your co host of disabled lives matter and joining me today we have who do we have norma.

NORMA STANLEY: it's norma stanley Hello how's everybody today.

Nadine Vogel: norma you and I just have so much fun doing this don't we.

Nadine Vogel: disable lives matter is a podcast, but it is more than a podcast, it is a movement, and in order to really have a successful movement, you have to have amazing people on your show, and we are doing that, today, with Lionel woodyard Lionel, thank you for joining us today.

Lionel Woodyard: Thank you for allowing me and ask i'm glad to be a part.

Nadine Vogel: Oh good good so let's start with the fact that, as far as I know you do not have a disability, but are in fact a disability advocate Is that correct.

Lionel Woodyard: I work in an environment with people with disabilities.

Lionel Woodyard: But most of them have some unknown disability seen and not seeing.

Lionel Woodyard: and are.

Lionel Woodyard: capable eligible to possibly at some point in your life become a part of the disabled community.

Nadine Vogel: Absolutely it's one of those communities we can all join.

Lionel Woodyard: I didn't learn that until later so i'm not being smart, but we all are capable of possible candidates to be a part of a Community that is the largest minority community on the planet.

Nadine Vogel: Absolutely it's one of those groups any of us can join at any time.

Nadine Vogel: Now you are i'll say your day job you own a limo and transportation company correct.

Lionel Woodyard: Well i'm retired from Clark Atlanta university.

Lionel Woodyard: But because of the retirement I started Atlanta Chauffeur Service, which is a bible business now Atlanta Chauffer Service based in Atlanta, but we do transportation anywhere on the planet.

Nadine Vogel: Oh wow.

Lionel Woodyard: So that business still thrives but because of Covid we haven't been very very active.

Lionel Woodyard: So I do some.

Lionel Woodyard: Other things in the transportation arena.

Nadine Vogel: got it got it so share with us, if you will, your introduction to the disability community.

Lionel Woodyard: In 1970 I attended mobile state Community college well there, it was junior high.

Lionel Woodyard: And I saw a sign it's it's summer job camp New York, I had no possible.

Lionel Woodyard: Summer job opportunity that i'm wantedto pursue.

Lionel Woodyard: camp i've been I mean eagle scout.

Lionel Woodyard: work.

Lionel Woodyard: At a boy scout camp six consecutive summers as an eagle scout but the hook was New York.

Lionel Woodyard: going to New York from Alabama.

Lionel Woodyard: Okay flying on the airplane which I hadn't done nor anyone in my family had done that part of the story is quite interesting but but I worked at a camp in upstate New York, we part of the story.

Lionel Woodyard: called amounts in New York and the name of the camp is Jened camp Jened and it says camp jened for the handicap, which was the word back then.

Lionel Woodyard: My in my interview with Mr gene Morgan who hired me to work at this camp I don't recall him, saying that the camp was for handicap kids and adults yet that was part of the interview would not have mattered, I was interested in getting out of out of Alabama.

Lionel Woodyard: Looking back over it now I don't think that I got a job, I think that I have an invitation.

Lionel Woodyard: To be there as.

Lionel Woodyard: those others who came to be there in summer 1970 they were invited by something really, really special and we call that the jened spirit invited us.

Nadine Vogel: Okay, very cool so tell us to tell us what was it like being part of that camp.

Lionel Woodyard: It freed me the first time I felt a part of a Community of the human community.

Lionel Woodyard: Cause growing up in mobile Alabama in 1970 things were still new in terms of.

Lionel Woodyard: Diversity in terms of access being able to go places and do things you know I grew up in the 50s and 60s in mobile Alabama in the south.

Lionel Woodyard: Where there were laws that said, people could not be together, you could even sit on a park bench with someone who was not the same race that you are you know that I grew up in that environment so i'm going to this camp.

Lionel Woodyard: For the first time interacting with people that were none African American.

Lionel Woodyard: That was very, very new and refreshing to me let me tell you something i've worked at the camp, the boy scout team as an eagle scout who prior to working on.

Lionel Woodyard: at jened I work as an eagle scout prior to going to jened this is what happened there were two camps pushmataha and leon roberts they were both segregated

Nadine Vogel: Ah.

Lionel Woodyard: Leon Roberts was the black camp pushmataha was a white camp united way said, unless you stop this segregated scouting we're not going to fund you so they built one big camp.

Lionel Woodyard: at Camp Leon Roberts eagle scout Lionel taught swimming and camp mirrored that.

Lionel Woodyard: At the new White can eagle scout Lionel worked in the commissary washing dishes.

Lionel Woodyard: job is not treated as an equal to the other staff members right when I went to Camp Jened

Nadine Vogel: Umm.

Lionel Woodyard: I was hired as a counselor and a swimming instructor that's exactly what I did I became a counselor and swimming instructor I remember the day we arrived it was a Sunday Sunday night we flew up from mobile Alabama.

Lionel Woodyard: No one in my group there was six of us had ever flown on a plane.

Nadine Vogel: So it sounds like it was inclusive, though, for you on so many different levels.

Lionel Woodyard: It was totally inclusive, it was inclusive.

Lionel Woodyard: In terms of diversity, and it was inclusive in terms of our cultural inclusiveness.

Lionel Woodyard: In terms of being exposed to a new culture, because most people never meet anyone with a disability right.

Nadine Vogel: Right So what did you learn from that, what did you learn about the disability community by being that camp counselor.

Lionel Woodyard: First person who I shook hands with the camp was a counselor named Paul Goodman he was born with.

Lionel Woodyard: A disability his hands was not his hand was not a hand

Lionel Woodyard: But what he had he stuck out to shake.

Lionel Woodyard: So I grasped it and shook and said okay all right, you know he didn't have any inhibitions about who he was.

Nadine Vogel: Right.

Lionel Woodyard: And his gesture Jewish guy I guess it was that of acceptance, so I now, felt, oh Okay, this is going to be different.

Nadine Vogel:  Right.

Lionel Woodyard: So I gain a sense of freedom and and inclusion.

Nadine Vogel: Did you have.

Nadine Vogel: So beyond beyond that inclusive nature, would you say that they were Aha moments for you they're like oh my gosh oh my gosh like just.

Lionel Woodyard: During the training. We were there for an entire week training to work with kids and adults who would be coming to the camp from New York City with disabilities, if you don't know what a disability is but that one or 2, 3, 4 people riding around getting around the camp, who are in wheelchairs.

Nadine Vogel: Hum.. 

Lionel Woodyard: And i'll say okay. Because most of us have never seen anyone with with my grandmother was in a wheelchair, but she was not disabled right right she was grandma in a wheelchair, we didn't no.

Nadine Vogel: [laughter]

Lionel Woodyard: Okay, but here they are 200 wheelchair, people are people in wheelchairs coming in one week's time and there are a lot of things and you're going to have to do.

Lionel Woodyard: As a counselor to make the lives work so in order for you to understand what this is, we have a Litmus tests, they took a hat and you reached in and pulled out your disability for twenty four hours

 

Nadine Vogel: Yep.

 
Lionel Woodyard: Okay, so if you were blind your disability was being visually impaired, they visually impaired, you.

Lionel Woodyard: For twenty-four hours and everything you did was that I was cerebral palsy.

Lionel Woodyard: And it put me in a wheelchair, and they really, really tied my legs, so I couldn't and my arms.

Lionel Woodyard: Okay.

Nadine Vogel: Right.

Lionel Woodyard: And I had to allow someone to take me to the bathroom, okay.

Nadine Vogel: To take me to the shower.

Nadine Vogel: wow.

Lionel Woodyard: And to feed me.

Lionel Woodyard: You see, the reason I said I was invited because some people who showed up. couldn't do it

Nadine Vogel:  yeah yeah.

Lionel Woodyard: I stayed I accepted the invitation and got an understanding of what would be happening so my Aha moment is Aha okay your ultimate humanity comes out when you.

Lionel Woodyard: Work with someone with a disability, your ultimate because if you wash someone face other than yours, you have to do it as if you're washing your own face.

Nadine Vogel: Absolutely.

Lionel Woodyard: Taking someone to the bathroom.

Nadine Vogel: Absolutely absolutely now that's that's really important, thank you for sharing that, so we have to just take a very short break so for our listeners do not go away we're having this amazing conversation.

Nadine Vogel: And, and when we come back we're going to talk about the movie that's been made with some of your old friends and talk about how to this movement keeps moving forward so stay tuned everybody 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, this is nadine vogel and norma Stanley. 

NORMA STANLEY:  Hey.

Nadine Vogel:  Back with another great episode of disabled lives matter and we are talking with Lionel woodyard and norma I think you had some questions you'd like to ask, Lionel.

NORMA STANLEY: Well yeah I mean I just love the fact that Lionel was able to stay in touch with some of the people, he became friends with back at Camp Jened, and some of these people now internationally known disability activists and you know, Oscar nominated directors tell us about.

NORMA STANLEY: Those people and how it feels to be connected, with those people what's going on now.

Lionel Woodyard: Well, we were more family.

Nadine Vogel: yeah.

Lionel Woodyard: We were a family.

Lionel Woodyard: I went up summer 70.

Lionel Woodyard: I went back up summer 71.

Lionel Woodyard: I went back up summer 72 thinking that that would be my last time before getting a job that was the year that I graduated college and I went back up.

Lionel Woodyard: Um, the first year.

Lionel Woodyard: I you became so connected to the camp outside, in addition to the Councelors but, more importantly, the campus I still  remember Clifford Seagle, Calvin Cruthers, Scott Menthal, Edmond Cremmins, ah Carrie Walker.

Lionel Woodyard: Um... I thought this guy's today Lopez john McCormick who taught me sign in one of them no in one day because we you learn the ABC's with john you know.

Nadine Vogel: Right.

Lionel Woodyard: It would be years I would be driving and I would I taught all my children how to do the ABC's in sign.

Nadine Vogel: Wow.

Lionel Woodyard: But you remember them because they became an intricate part of who you are.

Nadine Vogel: Right.

Lionel Woodyard:  I could still hear Clifford Seagle's voice.

NORMA STANLEY: But you also know people like miss Judy Heumann and Jim LeBrecht.

NORMA STANLEY: Part of the netflix documentary Oscar nominated documentary crip camp, and you still stayed friends with them for all these years.

Lionel Woodyard: Okay let's go with this summer 72 after the summer 72 I moved from Alabama to New York, I live with Larry Allison who's on the film the big guy that was digging holes for the kids there.

Lionel Woodyard: he's the greatest guy in the world, he was a person that that may it understood that the disability, the world was disabled.

Lionel Woodyard: Yes, we didn't provide access for the people it wasn't the people that had a problem it was the world. 

Nadine Vogel: Yep.

Lionel Woodyard:  And he became the New York City czar for disability, so when I moved to New York, I live in his home jack geckelman or sheldon corey Jim LaBecht. Brecht was my camper.

Nadine Vogel: [laughter].

Lionel Woodyard: On Jim LaBrecht was my camper.

Nadine Vogel: wow.

Lionel Woodyard: I have a picture of Jim LaBrecht and I we work just just every day you woke up you were on it until sunup to sundown you were. doing things and experiences.

Nadine Vogel:  And Jim is the Co director of the film I think crip camp right.

Lionel Woodyard: Jim is a Co director of the film from.

Lionel Woodyard: High School went to California for college he went to San Diego state to major in music in our in sound he wanted to be the sound technician for the grateful dead.

Nadine Vogel: [laughter].

Lionel Woodyard: And, most of the New York community, that had started disabled in action moved out to California.

Lionel Woodyard: Judy Heumann on Judy Judy is the most courageous bad ass woman you ever want to meet period if I had a knife fight in an alley I want Judy Heumann in that fight with me.

Nadine Vogel: [laughter].

Lionel Woodyard: she's such a.

Lionel Woodyard: sweet really dynamic woman who refuse to be denied.

Lionel Woodyard: Man she she got a degree in education, when she was told to major in social work she didn't want to major in social work she wanted to be a teacher, she was told she couldn't be a teacher because she's a fire hazzard.

Lionel Woodyard: Yeah. You know, in the interview that Judy Heuman when Judy Heumann got her job of started being a.

Lionel Woodyard: There were people like myself and Sheldon Court supposedly non disabled people who were part of the organization, but the organization was run by individuals with disabilities.

Lionel Woodyard: So, so we stayed in touch over the years, even through phone calls and you just heard, where people were, but when the Internet happened then we were able to really connect but I've been going out to California visiting Jim for years, and he to to would be here in the summer.

Nadine Vogel: wow wow that's that's amazing I you know, I think.

Nadine Vogel: you're listening to this, I it almost makes me want to ask every single person.

Nadine Vogel: To do something in the disability Community if they're not disabled themselves or don't have a disabled family member to do something in the disability Community to be able to feel that invitation that you felt.

Nadine Vogel: Right.

Lionel Woodyard: Yeah.

Nadine Vogel: And come away with the learnings and the perspective and appreciation that that you've come away with because that's what we're missing we're missing that from a human rights perspective we're missing it from a diversity perspective I don't know how you feel about that.

Lionel Woodyard:  Well.  I think that the world has to open up so that people with disabilities, become more visible.

Nadine Vogel: yep.

Lionel Woodyard: You understand.  See still my nephew Malcolm has cerebral palsy.

Lionel Woodyard: Malcolm is. 26-27 he went to school at Monday's Meal, Monday's Meal is the name of the school here and and and our Atlanta he went to regular school.

Nadine Vogel:  uh huh.

Lionel Woodyard: Okay.  His mother has made Malcolm an intricate part of the family and of the Community and the same with Norma.

Lionel Woodyard: Norma's daughter Sierra is an intricate part of the family and the Community, but for every Sierra Stanley and for every Malcolm Janckie Janckie there 34,000 other kids who we never see and a lot of it has to do with parenting.

Nadine Vogel: Yes. 

Lionel Woodyard: Okay.  Some parents don't want their children, but either they are over protective, not over protecting protecting them, you know, but the more we see and become exposed to people with.

Nadine Vogel: Yes.

Lionel Woodyard: visible disabilities, we recognize the person before we recognize the disability.

Nadine Vogel: absolutely.

Lionel Woodyard: Accepting, the world will become for disabilities, I get pissed off with you know we have a look at the grocery store and you see a car parked in a disabled parking.

Nadine Vogel: Yup.

Lionel Woodyard: I walk around to see.  

Nadine Vogel: [laughter].

 

Lionel Woodyard: I walk around the card to see if they have a tag. I say Oh, maybe I see him in the store.  If they're not I curse.

Nadine Vogel: yeah yeah.

Nadine Vogel: yeah I know because you know, like you said earlier, you know it's one of those.

Nadine Vogel: it's one of those communities that anyone can join at any time yet.

Nadine Vogel: If you look how people with disabilities are often treated it's no one wants to join that Community unless, of course, like to your point oh it's benefiting me by parking in an accessible spot when I when I shouldn't be.

Nadine Vogel: You know I drive it's like nails on a chalkboard to me, so I agree with you completely.

NORMA STANLEY: You know what no we gotta go soon, but I wanted Lionel to share, about the historic site that they're doing at camp jened.

Nadine Vogel: Oh yeah please.

Lionel Woodyard: All right, as you know.

Lionel Woodyard: Camp jened is why there was a film called crip camp.

Lionel Woodyard: yep it's based on the movement that came out of crip camp, not that it was the beginning of the movement, it was a movement that was sparked more set on fire by by camp Jened by the likes of Judy Heumann and Larry Allison and Denise Denise Sharod Jacobson now, who was hoot hot.

Lionel Woodyard: woman.

Lionel Woodyard: I used to tell Denise's husband, that I love your wife.

Nadine Vogel: [laughter].

Lionel Woodyard: Densie says, if you remember in the film was just phenomenal.

Nadine Vogel: yeah .

Lionel Woodyard: but oh.

Lionel Woodyard: Oh.

Lionel Woodyard: You know I'm over 71 what was the question, I got the question I think.

NORMA STANLEY: it's about the historic. They are making it a historic site, camp jened.

Lionel Woodyard: The film and the camp.

Lionel Woodyard: I talk with people within the Community as event, we need to get a historic a marker because half those people are going to want to know where is the camp.

Nadine Vogel: Absolutely.

Lionel Woodyard: So, so we call up to the hunter mountain and we were very, very warmly received by.

Lionel Woodyard: By DD Fork it's this DD Fork which is the first person I talked to.

Lionel Woodyard: Linda Gary an attorney that's a part of the city council up there.

Lionel Woodyard: And Gary. Slovsky

Lionel Woodyard: I'm not sure how he 

Lionel Woodyard: pronounces it.

Lionel Woodyard: I think this is incorrect.

Lionel Woodyard: They they they They grabbed the ball and got it rolling.

Nadine Vogel: Then the things that had to be done, the state.

Lionel Woodyard: of New York had to get involved.

Lionel Woodyard: But the site of camp jened which is now a construction company.

Lionel Woodyard: will be designated as a historic place in the State of New York October 2 2021 and I'll be there i'm going to M-C the dedication and hopefully read a letter from Barack Obama.

Lionel Woodyard: Barack and Michelle Obama became Executive Director of the film crip camp we have right now 30 odd people that are from the Jened family that are coming from as far away as California and Arizona.

Lionel Woodyard: We have had heard the camp camp America counselors from Europe, a woman named Chris and a guy from Poland, who worked at the camp have seen some of the publicity and they're they're not going to be there, but their wishes are going to be there.

Lionel Woodyard: We commissioned I commissioned we commissioned a t-shirt that says.

Lionel Woodyard: Camp Camp Jened 

Nadine Vogel: uh huh.

Lionel Woodyard: a spirit.

Lionel Woodyard: That sparked the disability.

Lionel Woodyard: rights movement.

Nadine Vogel: Nice 

Lionel Woodyard: changing the world forever.

Nadine Vogel:  I love it.

Lionel Woodyard: Camp Jened spirit lives still.

Nadine Vogel:  Awe, I love it.

Lionel Woodyard: Exists two wheelchairs on there.  That shirt is available if you email because we don't have anything online.

Lionel Woodyard: But for those out there who are interested in getting this once is. This this.

Lionel Woodyard: Is family.

Nadine Vogel:  yes.

Lionel Woodyard: Should, Join the Jened family and get a shirt.

Lionel Woodyard: Well, October second or after and October 2 from this point on they all will be camp jened day.

Nadine Vogel: I love I love it I love it and norma, we need to ask, we definitely need to ask um.

Nadine Vogel: Who else wants to get the shirts, you know, we should talk to some folks about doing well.

Lionel Woodyard: i'll give you my email address can.

NORMA STANLEY: Do that right now.

Lionel Woodyard: Yes, send it, send it to lionelje@aol.com yeah i'm still AOL.

Lionel Woodyard: Or send it to Lionelwoodyard@gmail.com

Lionel Woodyard: give me your size your mailing address, and we will get back to you phone numbers are better for me cause I call people.

Nadine Vogel: yeah that sounds that sounds great because we actually have Judy Heumann on speaking she's like a keynote speaker at a small disability event that springboard is my company is hosting on Tuesday virtually so.

Nadine Vogel: This is a perfect timing.

Lionel Woodyard: Tell her you talked to Lionel.  Have you read judy's Book.

Nadine Vogel: Yes.

Lionel Woodyard: That book is off the chain.

Nadine Vogel: I know, I know.

Lionel Woodyard: I know often times I listened to Judy's books, I like to listen audiblely.

Nadine Vogel: Right.

Lionel Woodyard: The woman who's reading judy's book is almost as feisty, as Judy.

Lionel Woodyard: that's my girl I love July, i've been in touch with her since 1970 we kept in touch.

Nadine Vogel: Well, I will definitely tell you said hello, this is perfect timing and Lionel Thank you so so much for joining us today, I think that I know that our listeners are going to benefit from hearing from your story and and I know I did I just enjoy just talking with you norma same here right.

NORMA STANLEY: yeah well you know Lionel and I have become pretty good friends, so I appreciate him taking time out of his schedule to participate with us on disabled lives matter and we look forward to learning more about that historic site at camp jened, so thank you, Lionel.

Nadine Vogel: Absolutely.

Lionel Woodyard: Here about crip camp, see crip camp and you'll see the family.

Nadine Vogel: yeah absolutely.

Nadine Vogel: Thank you once again and for our listeners, we know that you enjoyed this episode and we will see you next time on disabled lives matter bye everybody.

NORMA STANLEY: bye bye be blessed 

Lionel Woodyard:  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-Ep31_Erica_Hawkins

S1-Ep31_Erica_Hawkins

September 30, 2021

Disabled Lives Matter
Season 1, Episode 31
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Erica Hawkins

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 and I am joined by the fabulous norma Stanley and norma you want to say hello to everybody.

NORMA STANLEY: Hello everyone it's good to be back with disabled lives matter.

Nadine Vogel: yep and together we are your hosts of what is not just a podcast but a movement and today the woman who is going to help us with this movement is Erica Hawkins Erica welcome to the show.

Autumn's Gift Respite Care: Thank you for having me nadine.

Nadine Vogel: Absolutely, so now you have if I if I know correctly you're a special needs mom like Norma and myself and your daughter has autism.

Autumn's Gift Respite Care: Yes, so autum does have autism um in addition to everything else that kind of goes along with that gamut.

Autumn's Gift Respite Care: So the ADHD and the sensory processing so yeah.

Nadine Vogel: And how old is autumn.

Autumn's Gift Respite Care: Autum is 14 now.

Nadine Vogel: Oh okay, so that's always a interesting age whether they have special needs or not.

Autumn's Gift Respite Care: Absolutely absolutely and I think that you know of course you and norma know that once they hit that age is just like you know typical or neurotypical behaviors and then you see their their own personality and behaviors coming through so it's very interesting.

Nadine Vogel: You know, I've told everyone that you know teenagers and especially teenage girls, whether they have disabilities or not they definitely have special needs.

Autumn's Gift Respite Care: Yes, I agree, I agree.

Nadine Vogel: And we've all been there ourselves so we know.

NORMA STANLEY: Absolutely.

Nadine Vogel: norma you know had brought you to to our attention because of autum's gift and I believe you founded this it's a 501 C three i'm a metro Atlanta, can you tell us a little bit more about what autum's gift is.

Autumn's Gift Respite Care: So autum's gift is a tailored respite.

Autumn's Gift Respite Care: For families that have our loved ones with various disabilities and we've really focused on customizing our programs we were founded back in 2009 we had very gracious partners.

Autumn's Gift Respite Care: Who kind of just took us on, and let us kind of fell through things and i'm going to figure out how to develop the what what we feel is the best respite program definitely in the southeastern region.

Nadine Vogel: Okay, well, I, I know that respite is really, really important.

Nadine Vogel: You know and it's it's one of those things where parents, especially of younger children.

Nadine Vogel: They don't even know how to begin to take care of themselves because they're so focused on taking care of the kids.

Nadine Vogel: Right and then norma you know, for you as a single mom at this point, I mean even harder right so so let's talk about how we define respite you know what are those services How do people find out about it let's just start with what the services are.

Autumn's Gift Respite Care: yeah so fortunate, you know for myself, I am married, but the struggles are still the same you know with our families, it really doesn't matter, because what ends up happening is.

Autumn's Gift Respite Care: You know the load of caring for that child is really handled by you know more so, one of the parents versus the other so yeah so i'm sorry nadine what's your question again.

Nadine Vogel: Well, just let them talk about when we say respite what do we mean by that what kind of services that you're providing.

Autumn's Gift Respite Care: yeah so um our respite services are twofold so those services can be delivered.

Autumn's Gift Respite Care: Within individualized basis or in a group setting we prefer group settings because our idea or our philosophy of respite is not only the character giver having a break from their loved one, but also the love when I have enough having a break as well.

Autumn's Gift Respite Care: So with That being the case.

Autumn's Gift Respite Care: We really like to focus on those small group settings and those small ratio, so that we can do different things like hit them out into the Community.

Autumn's Gift Respite Care: and get them out on the Atlanta belt line and go for walks take them to museums um just different things, and within those small groups we run on a membership basis only.

Autumn's Gift Respite Care: So with That being the case, they're always with the same people, so what we've seen.

Autumn's Gift Respite Care: With our group is that it has given them an opportunity just kind of form, builds long lasting friendships and you know that usually people you know, naturally.

Autumn's Gift Respite Care: You know form those and they're just kind of out having fun within our Community, we need a little bit more assistance with doing that right, so what we found is that.

Autumn's Gift Respite Care: By specializing in our programs, making it a membership basis, only then we're able to really continue to focus on those small groups focus on having fun, while the caretaker is having a great as well as the loved one.

Nadine Vogel: So so Okay, so when we have the respite you know, the respite is it for like an hour is it for a day or a weekend How does that work.

Autumn's Gift Respite Care: yeah so our respite programs are four to seven hours long and that's for the groups, as well as for the individualized programs, um so, and really with our individualized programs it's tailored.

Autumn's Gift Respite Care: to fit the needs of the families so some families have our services on both Saturday and Sunday and some of them have them maybe a Wednesday.

Autumn's Gift Respite Care: So that's usually how our programs fall um now we do also offer a retreat to both our adults and our she's invited program, and so they went this past year to watercolor Florida for about five days um.

Autumn's Gift Respite Care: yeah so they absolutely love 30-A, of course, it was.

Autumn's Gift Respite Care: A group of approximately six, the ratio to staff, it was about four staff, plus myself and another, head of the program was there in the city, so that we can help out as needed so that's given them the opportunity to get away with friends.

Autumn's Gift Respite Care: enjoy you know, things like go to the beach go to the pool they went out to dinner to play just to do different things, and have those overnight well, while the parents go ahead and take a break during the same time.

NORMA STANLEY: love that love that.

NORMA STANLEY: You know, I was.

NORMA STANLEY: One of the things that I really wanted to one of the reason I wanted you to kind of be on the show was because that is such a challenging and and such an important thing when you're leaving a child, with.

NORMA STANLEY: Somebody who's caring for them and it's not you, you want to know that you're going to come back and find your child Okay, there was a  story that just bothered me just last week about a young lady who has cerebral palsy who's was with a caregiver.

NORMA STANLEY: And who died.

NORMA STANLEY: In the car the caregiver left her there for five hours.

Nadine Vogel: Oh, my God.

NORMA STANLEY: And left, so I just wanted to kind of get an idea because I just think it happens, too often, for our children.

NORMA STANLEY: It happens with a lot Children these days I don't understand it, but particularly for you know vulnerable populations like children disabilities it's happening more and more, and I just want to understand.

NORMA STANLEY: What the screening processes of hiring people who is taking taking care of children who can I talk to themselves and who can't help themselves, she obviously couldn't unlock the car.

NORMA STANLEY: You know that's why she didn't take her with her, I don't know, but those are kind of things that really concerned me and I was wondering if you could shed some light on the screening processes.

NORMA STANLEY: To you know when you when you're making sure that your people who are taking care of our children are handled and cared for properly.

Autumn's Gift Respite Care: And qualify yeah.

NORMA STANLEY: Definitely qualified.

Autumn's Gift Respite Care: yeah so that's that's the lesson that we learned back in 2000.

Autumn's Gift Respite Care: And when we first started when we first started, of course, you know our mission was respite and we wanted to you know have volunteers and.

Autumn's Gift Respite Care: offer this extended date service to families, but we quickly found that that really didn't work because you know volunteers, they you know we're thankful for them, of course, our Community is but.

Autumn's Gift Respite Care: um they would come and go she's had and they weren't as committed as we would like, so what we did was.

Autumn's Gift Respite Care: We started a screening process so once a person is asked to interview with autum's gift the interviewing process to face.

Autumn's Gift Respite Care: So it's pretty rigorous each phase is about an hour and that's before we even meet them in person, and so we usually do two zoom.

Autumn's Gift Respite Care: Meetings with them one on myself than one with whomever will be their lead we meet them at our campus.

Autumn's Gift Respite Care: kind of just spend time with them and then we invited them to come back again so they could spend a day with our participants, so that we can just see.

Autumn's Gift Respite Care: How, you know just kind of what their flow is what their natural feel is for the community and I always to learn, please I can't teach you compassion.

Autumn's Gift Respite Care: But one great thing about our children is that they let you know right away, whether or not they're feeling a person or not, so why before they're even higher, you know they they do a couple of those screenings as well, so that we can just kind of get a feel for them.

Autumn's Gift Respite Care: In addition to that, once that phase is done we've been introduced them to.

Autumn's Gift Respite Care: It is for an individual client we introduce them to the family and allow the family to meet them and allow them to spend some time in their home um so our process is very.

Autumn's Gift Respite Care: Rigorous, our process is time consuming it's not just the kind of job that you can jump into, of course, we do the background checks and the drug screen and things of that sort, but we also take it a step further and we.

Autumn's Gift Respite Care: make sure that persons are going to be with us for a long period of time, so with That being the case, we have their pay even structured in a way that you have to give notice Okay, so you can't just.

Autumn's Gift Respite Care: fall in the company, you know work with the family, get a check and go um so we make it so that you know they have to give us up 45 day or we're pulling back our referrals.

Autumn's Gift Respite Care: Just kind of things of that sort, in addition to that, we believe in transparency for our families, so we do operate on an APP so when our staff members are our with our small groups or with our individuals.

Autumn's Gift Respite Care: Our parents are within that timeframe receiving live pictures live videos live feedback of what exactly is going on with their loved one exactly what activities they're they're engaging in because there's no better person than the parent.

Autumn's Gift Respite Care: That can tell whether or not their loved one is genuinely having fun and that's what our focus is fun so again, we want them to have fun and have a break, but we want our families to have a guilt free break too so with the with the.

Autumn's Gift Respite Care: The zoom meetings initially the interviewing process inperson and the shadowing the interviewing with the families and then that transparency.

Autumn's Gift Respite Care: That is mandatory throughout the day once they're employed with.

Autumn's Gift Respite Care: US is kind of you know it all goes into our game of helping to keep them safe.

Autumn's Gift Respite Care: On and I know it's a lot, you know and respite is very expensive I worked in the field extensively before autumn's gift so I get it.

Autumn's Gift Respite Care: And I get that one to one can be very expensive, but I think it has just helped that i'm a mom and I know exactly you know I feel I knew exactly what our community needs what our children need that was able to put together a program that was able to treat them all, like they're mine and.

Autumn's Gift Respite Care: You know, hold everyone accountable, who comes in.

Autumn's Gift Respite Care: Contact with them.

Nadine Vogel: that's great, so we are at a point we just have to take a short break.

Nadine Vogel: For our listeners stay tuned don't go anywhere we'll be back in just a minute with disabled lives matter.

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: Alright, everybody, this is nadine vogel and I am back with norma Stanley and together we are co hosting disabled lives matter.

Nadine Vogel: We are speaking today with Erica Hawkins who's talking with us about autumn's let me see what let me get the right name autum's gift, which is this just this fabulous service for respite and I can tell you norma you and i've talked about this right as special needs parents.

NORMA STANLEY:  Yeah.

Nadine Vogel: Respite respite respite capital R if you don't have the family right and friends and folks that can help, this is the way to do it and Erica it sounds like you're doing an amazing job with this organization.

Autumn's Gift Respite Care: Thank you, thank you nadine.

Nadine Vogel: Just tell us a little bit about the disability types that you serve and the ages, that you serve.

Autumn's Gift Respite Care: Yeah, so the disability types that we service um pretty much vart and we feel like we're capable to and due to our screening processes were capable to take care of pretty much anyone who comes to us.

Autumn's Gift Respite Care: Um not so much medically fragile I think that's a different level of care that we're able to to give because we are a very active Program.

Autumn's Gift Respite Care: But, as for the ages you'll see on our website that our programs actually range from age three.

Autumn's Gift Respite Care: Throughout adulthood, and the three year olds that program is every moment counts it's about three to six what I found as a mom is that when autum was at that tender age, and we really need it.

Autumn's Gift Respite Care: Daycare programs for her inclusivity and it was not fair Okay, and so, for us it was like hey let's take her to the playground let's let's get a membership at the Y so while we're working out she can go into the kids room, because every single moment counted as.

Nadine Vogel: Early. intervention.

Autumn's Gift Respite Care: It is it is and we had to kind of you know find a way, so, aside from the every moment counts, we didn't go up into.

Autumn's Gift Respite Care: Our teams and adolescence um so we have our signature respite program and those programs and they're able to get out into the Community, we may have art therapist come in for the day music therapists.

Autumn's Gift Respite Care: And they do cooking they do sewing so much just a variety of different activities, and then we have the she's invited program which allows our girls.

Autumn's Gift Respite Care: um usually our girls are you know considered neuro diverse to come together and just help to bond and form those groups and things those little social groups that they will need.

Autumn's Gift Respite Care: And then we have our adults for our social experience and really with our adults.

Autumn's Gift Respite Care: They focus on the thing which is this expanding on those relationships that they have they do in Community activities Monday through Friday.

Autumn's Gift Respite Care: On they also have programs and things on Saturdays where they go to different outings like maybe to a braves game and um fine dining we're really like to let them kind of request and tailor their own programs.

Autumn's Gift Respite Care: or just provide us with a list of things that they want to do and share with each other so so yeah so autum's gifte has something for everyone.

Nadine Vogel: And I guess if someone does have medical needs, they could bring their own nurse or someone with them as part of the Program.

Autumn's Gift Respite Care: Absolutely, and you know what I had.

Autumn's Gift Respite Care: In that would be fantastic we're totally open to that and that's something that has helped to make us unique to is because we've even gone as far as is to have para professionals and things that come into our Program.

Autumn's Gift Respite Care: If a family really wanted to be there, so that they can train us how to work with that particular that particular child, so that we can you know just kind of streamline thing so yeah.

Nadine Vogel: So how about you, this is a $50 million question, I think, norma, you and I talked about this, we you know every interview right it is covid the dreaded covid right how has that impacted what you've been able to do.

Autumn's Gift Respite Care: yeah so covid.

Autumn's Gift Respite Care: yeah. the dreaded covid.

Autumn's Gift Respite Care: And what impact it has had you know for a while we had to stop our services, we were, and you know.

Autumn's Gift Respite Care: co-listing with different places and having our different programs set up as a different locations that we felt our participants could go into and.

Autumn's Gift Respite Care: meet their needs, environmentally but we had to stop that and that really and you know just kind of stifled our movement, a bit because we had to refigure things we had to just go back to the drawing board figure out.

Autumn's Gift Respite Care: How to make it work and so that's when we started doing a lot of different things in community, but we were blessed to meet Andrea Gordon.

Autumn's Gift Respite Care: Andrea Gordon is hosting an event called fashion meets food and, within that event, it will benefit autum's gift in our respite programs for families, so that.

Autumn's Gift Respite Care: The proceeds are going to go towards helping us to move into our own location so we're looking at doing that very soon, in October, so.

Autumn's Gift Respite Care: we're very thankful to Gordon and the chef for putting on this event for us and and it's going to be an annual event, and I know that it's going to be fun and will raise lots of money for respite i'm.

Nadine Vogel: Raising money for respite they know you said that you work on membership So who is it like sliding scale based on how people can afford to pay and then this becomes you know this fills the gap or How does that work.

Autumn's Gift Respite Care: yeah so the way that the money's work out is, we have one set fee, but all of the money raised.

Autumn's Gift Respite Care: All of the monies raised for autumns gift go right back into the scholarships so because that's where the greatest need, is because.

Autumn's Gift Respite Care: For us to provide the level of care that we do and a have Apps and creme de la creme Staff and things of that sort, we want to maintain those things, and that quality of care and so all of those things go back into the scholarship pod which fall back into our staff.

Nadine Vogel: got it. Well that makes a lot of sense.

Autumn's Gift Respite Care: So all of our families have. An opportunity to partake yeah.

Nadine Vogel:  Well that was great Well, I can tell you, you know norma you and I, and we are probably the biggest believers in respite right.

Nadine Vogel: And in not only the kids meaning of but even more so for the parents so Erica I just want to thank you so much for all that you do for autum's gift I believe it's a gift that you're bringing to everyone.

Nadine Vogel: And so appreciative that you came on our show today.

Autumn's Gift Respite Care: Thank you all so much for having me and for allowing me to speak with your families about respite. yay.

Nadine Vogel: Absolutely so norma another great show.

NORMA STANLEY: Yes, it was yes, it was a lot of great information shared today, so thank you again.

NORMA STANLEY: Erica and looking forward to bringing lots more great guests to disabled matter as the week's pass and they're passing very quickly as i'm looking into the year Lord help.

Nadine Vogel: Alright, everyone will see you again soon bye bye.

Autumn's Gift Respite Care: Bye.

NORMA STANLEY: Everyone 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!

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-Ep30_Valerie_Ghant

S1-Ep30_Valerie_Ghant

September 23, 2021

Disabled Lives Matter
Season 1, Episode 30
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Valerie Ghant

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 everyone and welcome to today's episode of disabled lives matter I am nadine vogel your co host along with norma.

NORMA STANLEY: hi everybody great to be back.

Nadine Vogel: I know I know I missed you guys in the last few I covid got me down.

NORMA STANLEY: yeah but we're glad you're back yes.

Nadine Vogel: It will not keep me out that's for sure.

Nadine Vogel: So today norma we're joined by someone, I think that you know Valerie Ghant and Valerie is someone who came to this community by way of I believe Valerie and accident of your daughter is is that correct.

valerie ghant: Yes, ma'am yes ma'am my daughter, unfortunately, was in a hit and run accident.

valerie ghant: She sustained a traumatic brain injury behind it.

Nadine Vogel: Oh, my goodness, I am so sorry how old was she when this took place.

valerie ghant: She was only 19 sophomore in college at Columbus State University at the time.

Ah.

Nadine Vogel: So, so you know, obviously norma and I are special needs moms um but, but not in that way right, you know our kids were born with disabilities and I think that when it's the result of an accident, it just as a whole nother level of trauma.

Nadine Vogel: So norma don't you think.

NORMA STANLEY: Absolutely, I think that that's a whole nother level of trying to adjust to something that you're not used to we our children are born this way, so we.

NORMA STANLEY: You know, go into we go into it, but to have it happen suddenly I can't even imagine, so you said that your daughter was in college and had the accident or was hit by a car and then she was never the same from that tell us of your experience when it first happened.

valerie ghant: well.

valerie ghant: Really when it first happened just unbelievable because it was so you know abruptly.

valerie ghant: Like I mentioned, she was in school at Columbus state sophomore just had graduated that may before the accident and.

valerie ghant: When it first took place, I was just you know overwhelmed as any mom would be with you know emotion, it was a hit and run, so the person that actually hit her you know they you know they fled the scene.

valerie ghant: So it took months.

valerie ghant: Before we actually was able to track them down.

Nadine Vogel: Oh, you did track them down.

valerie ghant: Yes, the Marshal the federal agent the marshals they got involved, and they were able to apprehend him about probably about four months after the accident, but that was just kind of you know it's just a lot of things going on in it at that time so like I said very.

valerie ghant: emotional emotional a lot of trauma, as you say just a lot of trauma involved.

Nadine Vogel: So what so what kind of I mean, I assume, she had the accident went into the hospital was in the hospital for a long time, rehab.

valerie ghant: It happen, a fourth of July weekend so fourth of July and just you know very memorable for me in that way, and that was in July, and she was in the hospital until December we didn't get out.

valerie ghant: And it probably was about two years before things just slow down, because at the time the injury was so.

valerie ghant: catastrophic she had a trach and just all these other things that we're we're new and then she had.

valerie ghant: A shunt also placed so with that it'll be a lot of hospitalization after the accident and sometimes we're in the hospital and as disability moms you guys may know you go in the hospital sometimes that's 30-45 days easily first.

valerie ghant: You know.

valerie ghant: I stay away from that place.

valerie ghant: As much as.

Nadine Vogel: I know I spent I spent three months with my older daughter when she was born, I remember, but nothing, nothing compared to two years, so so on, so you said she had a traumatic brain injury, so I guess you had a bleed or something which is why they have to shunt.

valerie ghant: Yes, ma'am she had a diffused head injury at the time I wasn't aware, you know, I was so overwhelmed on what should have taken place, as far as you know, with this type of impact this type of injury.

valerie ghant: She should have been stabilized and sent to a place that specialize in brain injury.

valerie ghant: That can handle any you know offset or anything that may occur, and you know that didn't happen at that time, so in that place would have been sheltered for us because it happened down in Columbus Georgia, as I mentioned, she was a student at Columbus State University at the time.

Nadine Vogel: A grade so oh my gosh so many issues so.

Nadine Vogel: Well let's let's go back into talk about what the different kinds of injuries were, but I do want to come back to this issue of not being brought to the right location, I think that this is.

Nadine Vogel: A huge issue in so many ways, on so you said she had a trade to breathe, I guess you can read on our own.

valerie ghant: Well, actually.

valerie ghant: She could she will stabilize she could I was able to take the trach out.

valerie ghant: That was a fight with me with doctors, because what i'm learning in the medical industry, sometimes even you know say something like cancer right your diagnosis not really you know, an injury.

valerie ghant: is just a certain format or protocol that they are trained to use, you know and sometimes you can get caught up with those things, and that becomes a whole nother issue you know.

Nadine Vogel: I you know I have and I don't know where, but you have as well experience you know I had doctor the wanted to trach my older daughter, and I said you'll have to cut my throat to get.

Nadine Vogel: to hers, you know, so I remember those things, all too well and.

NORMA STANLEY: And I don't know why, they don't listen to the parents, I mean, I know that we have medical professionals, but we know our children, we know.

NORMA STANLEY: What they feeling with and, for some reason, these doctors don't really want to listen to what we have to say.

Nadine Vogel: You know that's why I started disability mama so many years ago right, it could, and you know Valerie you've seen it but our logo for disability mom is a hot pink boxing glove.

valerie ghant: Oh God.  

Nadine Vogel: And it's like we're gonna fight today right to get what we need for our kids.

valerie ghant: yeah but it becomes so overwhelming and so just so i'm so glad you ladies, you know, created a platform to you know, to discuss issues of this magnitude, because this well need it, you know.

Nadine Vogel: So so let's talk about you ask them to send her to shepherd to the right location for traumatic brain injury and how did they respond.

valerie ghant: Oh, my God, so when it first happened right, you know i'm just overwhelmed i'm like what just happened right my mind is so caught up into that so I wasn't.

valerie ghant: You know I don't blame myself, but I just wasn't thinking clearly because all they were telling me was hey you know they were telling me she was gonna die that was just it she she's gonna die she's not.

valerie ghant: gonna make it and she's gonna die so and I had a praying Community boy I can you know I remember, just like it was yesterday all too well, but.

valerie ghant: It was probably about.

valerie ghant: Maybe 45-60 days and I started getting angry like you know what's going on here a liaison from shepherd Center was there, and she came down, and they have a program that's called.

valerie ghant: What is it disorderly.

valerie ghant: it's like for people that are in a minimal conscious state or just had an injury and they're like in a coma.

valerie ghant: I don't want to quote the name wrong but um I think disorders of consciousness, or something of that something like that, and I wanted her you know I asked them well can she get a bed, you know what you know, a charity bed or something can can we.

valerie ghant: You know shepherd and the only thing that the medical that they offer my daughter at 19 years of age right because she still has aged fighting for her, if nothing else.

valerie ghant: wants to take her to a nursing facility and, later on, as I met other moms on my you know for my brain injury family that's what I like to call it now, you know I learned the things that should have happened way after you know.

valerie ghant: Asia's accident, basically, how you know what should have necessarily took place and it's a lot of is some factors that I, you know know that you know, played a part in that you know I just I don't I don't know why, especially we're being so young.

valerie ghant: And it's.

valerie ghant: You know, different accidents it's people that have been ran over by cars and different things, and you know that's that's you know that's the norm stabilize them and get them to a place that specialize in that type of injury and normally that's brain injury or spinal cord injury.

Nadine Vogel: Right well, so we need to take a really short break when we come back, I want to explore that further or explore what those factors were.

Nadine Vogel: You know why why, why do you think you know they didn't do what they needed to do, and I suspect, I have some ideas, but I want to hear from you so let's go on a very quick break.

Nadine Vogel: And, ladies and gentlemen, don't leave us, we will be back with Valerie Ghant and hearing about this unfortunate story about her daughter.

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, this is medium vogel want to welcome you back to today's episode of disabled lives matter I am with my fabulous co host normal Stanley norma stanley, say hey.

NORMA STANLEY: Hi guys.

NORMA STANLEY: We're having a conversation here.

Nadine Vogel: yeah Valerie Thank you so much for for your willingness to share such a personal story and and what has happened now five years into it with your daughter's car accident.

Nadine Vogel: Before we before we took a break, one of the things we ended on was, you know that that it sounds like your daughter didn't really get.

Nadine Vogel: That necessarily the right care of that she needed right off the BAT although you were asking for it.

Nadine Vogel: And i'm just wondering if if you have some thoughts as to what those barriers were or factors to do with why she didn't get to a head injury expert, you know why she didn't get moved any thoughts on that.

valerie ghant: Well, in health care alone and it's just it's.

valerie ghant: it's Sad to say.

valerie ghant: But economical status plays a big role and race is a factor as well.

valerie ghant: You know at at not using the race car but i'm living it i've lived it, so I have to bear witness to that you know those were definitely factors that were involved, my daughter actually the insurance that January Asia turned 19 and the insurance that I had.

valerie ghant: dropped her because, when we were first their I guess the insurance Maybe it was showing up in the system.

valerie ghant: And I even had the neurosurgeon going from telling me her father that he could do xyz to he can't do anything.

valerie ghant: And I mean we you know we went back and forth and i'm like you just told us, you know you could you know perform this or take these type of measures, and now you know all of that just kind of changed in in later on in thought i'm just saying I guess that had to play a role in it.

valerie ghant: But they figured out that the insurance that we had it wasn't good they had dropped her.

Nadine Vogel: Oh, my gosh.  Oh, my gosh.

Nadine Vogel: I you know I have this ongoing issue norma you and I have talked about it, we talked about here at springboard just you know we've got to change healthcare.

Nadine Vogel: In this country absolutely I mean disability or not, we have just got to change health care, I have, I have just never seen some of the things that go on, and then I.

Nadine Vogel: I do agree Valerie you know, then we add raised or we add socio economic status and it just I sometimes I wonder what country were in.

Nadine Vogel: yeah right norma I mean.

NORMA STANLEY: Absolutely.

Nadine Vogel: On a regular basis and it's just i'm in all I know, and I don't think it's getting better I think it's getting worse.

NORMA STANLEY: it is absolutely getting worse, it absolutely is getting worse.

NORMA STANLEY: Um hm.. go ahead.

valerie ghant: yeah one of the bigger barriers is cost, just like you know with my daughter, she has a head injury and.

valerie ghant: A lot of therapy, that is offered that can help you know technology Advanced therapy, they do not deal with the insurance at all, because I guess it's such a headache they're not going to approve it.

valerie ghant: I had a personal experience, and it really doesn't matter, even if it's private insurance, we have had blue cross Blue Shield and it was a doctor, I took my daughter, and we went around I went everywhere, but.

valerie ghant: it's important immediately after a big injury, you know, spinal cord brain injury things like that that a lot of the things you take certain measures to kind of preserve certain things.

valerie ghant: from happening that tend to happen so that's why it's very important to get to a specialized facility.

valerie ghant: And so later on down the road.

valerie ghant: You know, once I realized certain things I still went on a rant as a mom and you guys, you know you'll know I drove all to Houston I you know I drove different places.

valerie ghant: But it's very hard, once you get a doctor working on a person and things don't take place to get some kind of recourse because that's a big big protected territory if you know what I mean.

NORMA STANLEY: Just like the police.

valerie ghant: yeah, and so we you know we went to we went to Houston and there was a doctor there she even she was trying to get Asia, maybe then it was probably.

valerie ghant: About two years after the accident.

valerie ghant: And she was trying to get her into TIRR Harmon Memorial it's down in Houston Texas it's probably known as one of the second or third best rehabs and she was trying to get her in there kind of late.

valerie ghant: But blue cross and Blue Shield you know you have to have something like you, meaning, you have to get admitted or something after a big injury to even try to.

valerie ghant: seek some help if that makes sense because that's how these log and different things are set up, so we had a shunt revision there and.

valerie ghant: i'm not sure if you know much about it but that's the procedure we had, and she was trying to you know fight to get Asia in there.

valerie ghant: And she was just even having the conversation how you know i'm not just saying this is facts behind it, a lot of African American or minority when something happens, they are not offer, they are not, they do not receive the proper rehab for some reason.

valerie ghant: So I just want you know, this is not an opinionated thing you know what I mean.

valerie ghant: They don't and My other point is, we had a private insurance, along with medi medicare.

valerie ghant: I think i'm saying that right not medicaid because you have to get that one, two years after the injury, but we at least have both of those and my point is with the private insurance, they were fighting worse.

valerie ghant: They would not approve her to go to rehab I mean it just went back I filed an appeal and she couldn't keep holding us because you know it's about it's a monetary thing.

valerie ghant: In the hospital to get to the rehab because the insurance will not approve it, you know, so it was just.

Norma Stanley: Wow. 

valerie ghant: It was just horrible.

Nadine Vogel: You know, when insurance companies say they don't make medical decisions, but when they do things like that they are making medical decisions they are altering the course of our kids lives or our lives or whoever, you know is is involved and it's just something that.

Nadine Vogel: Ugh.. it's you know you put the knife in and then you turn it so tell me tell me value, today, you know how has this changed your lives how's things going today.

valerie ghant: um well.

valerie ghant: Even at this point i'm trying to understand and adapt to the new norm.

valerie ghant: Hopefully, I mean and I guess, I asked myself some days, what is the new norm.

valerie ghant: You know, we just have a different way of life at this point i'm trying to modify my house at home, where it's A-D-A accessible.

valerie ghant: And you know that's a fight another barrier or a loophole i'm trying to jump through We live in a plan Development Community, and we have an Hoa and I find myself fighting to do that, and my daughter has a disability it's it's insane. 

valerie ghant: crazy yeah.

NORMA STANLEY: yeah and your daughter is in need now. of a standing wheelchair that's something that you can help look at this point, and you need some assistance and getting that because that's a very expensive proposition tell us about what you're trying to get done

valerie ghant: Yes, ma'am i'm trying to get Asia and I go back in my mind and say miss miss norma why wouldn't they offer a 19 year old back then, and you know wheelchair that can stand up, because at that point, you know it's a fresh injury, it could offset some of the things that are.

valerie ghant: happening, when a person is not moving physically.

valerie ghant: Like we are day to day.

valerie ghant: But you know they didn't so now i'm trying to get this standing wheelchair, the cost of the wheelchair is about $40,000.

valerie ghant: After fighting for Oh, I think we went to a seating clinic at shepherd back in November of last year it's almost November again.

valerie ghant: They finally approved it, most of it, but they left a $10,000 balance saying I guess it's not mandatory, that she stands up, even though it will offset other things that take place with by you not standing or being physical.

valerie ghant: You know, physically moving around because you're going to deteriorate, eventually, and I don't know if that's what you know I hate to say it, that they you know, not just for Asia, but with people in this population so yeah it's a.

NORMA STANLEY: So you 

NORMA STANLEY: you have a gofundme you're trying to create tell us about that

valerie ghant: I was trying to create a gofundme and efforts for Asia to get some rehabilitation, because I feel that she hasn't.

valerie ghant: She hasn't had a fair fight I don't feel like she's at her baseline when she returned to that bright 19 year old i'm trusting and believing God I choose to you know not to believe anything but that but besides that if she if she doesn't This could help her so much preserve.

valerie ghant: preserve her health, because if you're not active and moving around.

valerie ghant: you're going to deteriorate, eventually, you know that things are going to start to happen, but this wheelchair is good because it can stand her up like a standard up throughout the day, even if it's only for 10 or 15 minutes every two hours so.

valerie ghant: It helps in that way with her overall well being.

Nadine Vogel: yeah absolutely I you know I never understood this, you know it's not like you said there's known medical issues if someone you know, is in bed all the time we're in a wheelchair.

Nadine Vogel: And so, if we can eliminate some of those you know it's like pay me now or pay me later because if they don't pay for the wheelchair now they don't pay what's needed then there's going to have to cover other.

Nadine Vogel: expenses later like I I never understood that but.

valerie ghant: yeah you know with that it could mean.

valerie ghant: Less E-R visit us, you know what.

valerie ghant: i'm saying big medical stays because you know if you're not moving around you have situations with your.

valerie ghant: With your lungs and you know multiple atrophy is a big thing and it, you know it hurts and cause of the problem, so so i'm like what's really going on here that's why I have to say, are you, you know, hoping for the you know ultimate for this population what what is what is going on.

Nadine Vogel: Right, right.

Nadine Vogel: And, and what I would also say is in terms of your home and the Association on go go on to online and take a look for the state of Georgia, the Department of housing.

Nadine Vogel: It will cover things for private housing as well, relative to disability.

valerie ghant: Okay, thank you, I have looked at the fair housing and unfortunately I think i'm going to have to get them involved, just to make my home A-D-A accessible, I mean it's crazy it sounds crazy, but it is crazy.

Nadine Vogel: yeah.  When you have an association.

Nadine Vogel: It takes on a whole new because the associations can decide really what they want to do, but they can't overrule A-D-A, so I would contact them and have them help you, they should be able to do that.

valerie ghant: Thank you so much for sharing.

Nadine Vogel: yeah absolutely I just.

Nadine Vogel: Oh, my goodness norma.

NORMA STANLEY: Well, I just want to turn to be able to share with the listeners um you know if they choose to.

NORMA STANLEY: If they have resources that can be of assistance will be they can go to get information about you know what you're trying to do to help your daughter.

Nadine Vogel: And I also want to you know folks to hear that these barriers that you've encountered are real, you know.

NORMA STANLEY: There's a lot of people.

Nadine Vogel: These are not stories you hear about you know you're a real person your daughter is a real person you're experiencing this in a real town in a real hospital.

Nadine Vogel: Like We need people to understand this, that this is not made up this is what's going on you're just one person think about how many times a day, every day, this is happening.

Nadine Vogel: in hospitals in rehabs and with insurance all across the country so so I just want to thank you so much Valerie for being willing to share your story.

Nadine Vogel: And you know from the bottom of my heart and norma, we wish you all the best and your daughter, and to be able to recover in as much as and whatever capacity, she has the ability to.

valerie ghant: Thank you.

NORMA STANLEY: share the information with.

NORMA STANLEY: Share the information about it or give them where they eed to go to hel if they can.

valerie ghant: Well, I actually created a gofundme for Asia i'll leave my contact number also you can find that link on my Facebook page and that's Valerie Ghant and Asia's Facebook page is Asia Almez, that's A-S-A-I A-L-M-E-Z. 

valerie ghant: And my contact number is 706-332-1666 again it's 706-332-1666 it's a gofundme link that has been created we're trying to purchase this wheelchair.

valerie ghant: it's from new motion and her name is Asia Hoskins even if someone if they can't contact me i'm you know direct you know contact, however i'm just trying to be a voice for my daughter, right now, because she can't you know, be a voice for herself and try to get her.

valerie ghant: back to the best capacity as she stated as possible because, again I know she's not her bass line this young lady has so much fight in her.

valerie ghant: And I just don't want to sit around and watch her deteriorate, because the cost again that is affiliated with some of these things is just.

valerie ghant: astronomical for any you know even for a middle class family, the cost is just you know you would be bankrupt out of your home truck trying to seek you know seek help.

Nadine Vogel: yep absolutely well Valerie Thank you Thank you so much, once again, for joining us we're going to wish you all the best.

Nadine Vogel: This is nadine vogel and norma stanley signing off from another episode of disabled lives matter remember we're more than a podcast we are a movement, and we hope you will join that movement see you next time bye bye everybody.

NORMA STANLEY: bye bye. Be blessed.

valerie ghant: 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.

 

S1-Ep29_Diego_Mariscal

S1-Ep29_Diego_Mariscal

September 16, 2021

Disabled Lives Matter
Season 1, Episode 29
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Diego Mariscal

 

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 everyone and welcome to today's episode of disabled lives matter, this is not just a podcast, this is a movement, and I am just delighted to be joined by Diego Mariscal today for this movement Diego welcome.

Diego Mariscal: Thank you, thank you for having me really excited to be here.

Nadine Vogel: Absolutely Now I know I know Diego that you, you know you meet people often use a i'm disabled and i'm proud.

Diego Mariscal: yes

Nadine Vogel: A little bit about your background, please.

Diego Mariscal: yeah sure sure, so I was actually born in the United States by accident.

Diego Mariscal: My parents were both Mexicans were shopping and I was born six months and a half into my mom's pregnancy so.

Nadine Vogel: Oh, my gosh.

Diego Mariscal: yep pretty tiny baby my mom jokes and said that i've always been really stubborn even before I was born, I wanted to get out quickly.

Diego Mariscal: So um and so as a result of that I have CP Cerebral Palsy and, for me it manifest in trouble walking.

Diego Mariscal: A little bit of difficulty with reading and writing and.

Diego Mariscal: little bit of difficulty although you wouldn't know it on my hands and sort of dexterity overall, but primarily my legs um and you know growing up.

Diego Mariscal: With a disability in Mexico was definitely an interesting experience from an early age, I realized that I was perceived differently, I remember asking a kid if he wanted to play with me and he said that his dad didn't let him play with weird kids.

Nadine Vogel: Oh, my gosh.

Diego Mariscal: I know. So.

Diego Mariscal: But at the same time, I was lucky enough to to you know be born in a family of supportive parents my brother who's actually 10 months and a half younger than I am so my my parents didn't waste any time.

Diego Mariscal: He doesn't have a disability, and so, because we're so close in age in fact people call us Irish twins.

Diego Mariscal: So, because he doesn't have a disability and I think my parents, especially my mom did a really good job of.

Diego Mariscal: Setting the same level of expectations for me, as she did, as they did for my brother so.

Nadine Vogel: Yay mom.

Diego Mariscal: Right right.

Diego Mariscal: So, so if he has to make is bdd, I had to make my bed too you know clean up the table, all that stuff and so obviously with accommodations and modifications right, I would only carry like plastic cups. and plastic plates.

Diego Mariscal: What it did said it did set a parameter for me of of you know, high expectations and really being able to do whatever it is that my brother, and I wanted to do and so from there, I.

Diego Mariscal: I was a and i'm happy to go into any.

Nadine Vogel: direction you.

Diego Mariscal: want me to go, but I was a paralympian for a while then I started my first company in high school and then now I work on supporting other entrepreneurs with disabilities so.

Nadine Vogel: So, so I do let's let's go back to age 18 because I believe that age 18 you while still in high school you actually started is limitless prepatec

Nadine Vogel: yeah talk to us about that.

Diego Mariscal: yeah so you know that was interesting, so I was one of the few disabled people in my high school at least outspokenly.  You know.

Diego Mariscal: um and I felt like I wanted my peers, to understand what I was going through right um and so as a way to explain to other people I don't honestly as a way to make friends, I was like.

Diego Mariscal: What if we created a club that was all about teaching students about disabilities, so we would do things like eating without being able to see or using public transportation while in a wheelchair.

Diego Mariscal: love it, love it.

Diego Mariscal: and in 4 years, we were in 15 high schools across the country 80% of it was corporate funded um and it continues to be one of the largest youth led movements.

Diego Mariscal: About disability in Mexico, that in hindsight, you know, there are some things that I think we could could improved but I learned a lot, I was 19 at the time. so really really proud.

Nadine Vogel: Well, you know what's new what's fascinating about that though is that um so when my older daughter.

 

Nadine Vogel: And she has disabilities and when she was very young and in school, she was fed through a gastrostomy tube and had other issues and people would make fun of her the kids.

Nadine Vogel: And I would come into the classroom and we would sit in a circle, and we would kind of educate the kids.

Nadine Vogel: So that they would they wouldn't fear what they saw right and it would be more comfortable and engage her as a friend and so forth, so.

Nadine Vogel: You know it's interesting to hear what you did i'm like oh my gosh we could have started a whole movement across the country look what you did and and and I was this you know smart educated parent and I couldn't have thought of that, and you would 18 had this whole idea and oh. My gosh so.

Nadine Vogel: kudos to you, and you know it's interesting and you know I personally and I don't know how we should talk about how you do this but.

Nadine Vogel: I personally feel, how do you do we should take that program somehow right and how do you replicate it in other countries, because.

Nadine Vogel: You know i'm a firm believer that if we educate children.

Nadine Vogel: On on disability etiquette and things like that they won't become what I like to refer to as the stupid adults.

Nadine Vogel: Right and then we wouldn't have half the issues, I think that we have sometimes in corporate and to society in general, so I think that that's so powerful and especially like you said you know it's been corporate funded have you thought about bringing that to other countries.

Diego Mariscal: So that was actually so it's funny you say that.  Because.

Diego Mariscal: You know how to get this Together International so it's actually international because the original name of the of the of the movement in Mexico was together.

Diego Mariscal: And so, when I came to the states we we put together international because the idea was to bring it here that was that was idea.

Diego Mariscal: Okay um but what I learned, when I was trying to do that is a couple of things culturally there's a more vibrant.

Diego Mariscal: Disability Community here, and then the movement I think it's a little bit farther along and so some people in the disability Community looked at that as.

Diego Mariscal: kind of blackface.

Diego Mariscal: So a you know just because you're in a wheelchair for a day doesn't mean you fully understand what it's like to to hop to be in a wheelchair, you know.

Diego Mariscal: So that was one side of things, but then the other side is that, and this is where I think you know things could have been better, but the other side was.

Diego Mariscal: We were educating non disabled people, and so it was a bunch of.

Diego Mariscal: And the majority of people in colleges and high schools, and you know.

Diego Mariscal: For a variety of systematic reasons tend to be not disable, and so it was not disabled people educating other non disabled people. About. 

Nadine Vogel: Yeah that's not right that's what we want to do, but if we could have.

Nadine Vogel: People with disabilities, children.

Diego Mariscal: Yes, it is.

Nadine Vogel: And if it's younger children, then, accompanied by their parents.

Nadine Vogel: yeah just educating young children.

Diego Mariscal: Yes.

Nadine Vogel: right.

Nadine Vogel: Because I you know this doesn't need to be about the adults, this is about the the the elementary school middle school.

Diego Mariscal: yeah.

Nadine Vogel: Oh, my gosh well just know if you ever decide, you want to go back and do that I you got to support it here I think it's so important.

Diego Mariscal: We should we should talk about that because that'll be great.

Nadine Vogel: And i'm sure i'm sure my older daughter Gretchen who you probably talked with to get this.

Nadine Vogel: scheduled she works for our company we'd love to talk with you about how to do that.

Nadine Vogel: So yeah I should I should hook, the two of us to connect on that because that's.

Diego Mariscal: Just yeah.

Nadine Vogel: Yes, so so important, I will do that actually um so let's move forward so in.

Nadine Vogel: 2015 you founded Together International right now that's focused on supporting entrepreneurs with disabilities right.

Diego Mariscal: Yes, yes.

Nadine Vogel: So how are you supporting them what are you doing for them.

Diego Mariscal: yeah great question, so we are an accelerator by and for founders with disabilities, and so we look at.

Diego Mariscal: Really accelerating businesses, led by or startups led by people with disabilities and really the whole premises as disabled people, we have to solve problems every day.

Diego Mariscal: From the moment we wake up, we have to figure out how do we get dressed how we drive how we communicate and so those are problem solving skills.

Diego Mariscal: That if given the right resources, support and guidance can turn into thriving businesses um so it's all about a.

Diego Mariscal: Using that innate ability that or innate characteristics that disabled people have.

Diego Mariscal: to advance their businesses forward.

Nadine Vogel: got it got it and I think the same goes true for people with disabilities, not even in their own businesses but working in other businesses.

Nadine Vogel: And I you know i've heard you say disability is an asset for performance, I could not agree more, but i'd love for folks to hear when you say that what do you mean.

Diego Mariscal: yeah so the best example is you know there's this there's this common saying right doesn't matter how many times you fall it matters, how many times you get up.

Diego Mariscal: Well i've literally fallen thousands of times in my life.

Diego Mariscal: No exaggeration, literally falling thousands of times in my life and i've gotten back up thousands of times in my life right and.

Diego Mariscal: that's an example of just the resilience that that takes not in a hypothetical or metaphorical way it, you know, in a very real way very tangible way and so translating that in the business context, I mean talk about resilience right and the importance of of.

Diego Mariscal: harnessing that and that's just one aspect also um creativity right.

Diego Mariscal: You have to figure out how am I going to one of the things I have to think about is how am I going to get dressed in the morning how am I going to put my shoes on and.

Diego Mariscal: Little things like that you know force you to be creative in a way that you can translate that into a corporation, and then organization um

Diego Mariscal: I think.

Diego Mariscal: The step beyond that is for companies and organizations to create an atmosphere where that's allowed because sometimes there's a lot of internalize ableism that.

Diego Mariscal: folks with disabilities don't want to disclose their disability or don't want to show.

Diego Mariscal: that they have a disability, because of the internalized stigma um so so it's about creating the right atmosphere, to let those skills flourish.

Nadine Vogel: Right right no it's it absolutely it's about Problem Solving it's I mean, I agree, I always say you know i've seen my daughter do things in a way that i'll look and be like why on earth would you do it that way, but then you try it yourself and you realize that's more effective.

Nadine Vogel: Right or it's quicker or something it's more efficient and I, you know I clients of ours, you know as they've hired individuals with disabilities.

Nadine Vogel: And they start getting comfortable and they see and realize the benefits, then it's like Oh, we should of you know, we should have been doing this, a long time ago right it's so it's It is interesting, but people fear what they don't know.

Nadine Vogel: And what they haven't experienced and that's what that's what takes me back actually to why i'm so excited about what you've done with educating children.

Nadine Vogel: Because if we educate them at that age and they grow up not fearing disability and they grow up understanding that everyone is alike, then.

Nadine Vogel: Then it changes right by the time they get to college, by the time they get to the workplace it completely changes and that's that's what we need.

Nadine Vogel: We have a saying at springboard where we say to mainstream people with disabilities right it's not about treating everyone the same but giving everyone the same opportunity, yes.

Nadine Vogel: And that's really important, so it is time for us to take a short break, so we will do that for our listeners, please don't go anywhere we'll be right back with Diego and just hearing about his amazing story be right back everybody.

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 disabled lives matter more than just a podcast, it is a movement and Diego we are having this amazing conversation about all these just incredible things that you have.

Nadine Vogel: achieved and are continuing to achieve not just to benefit yourself but benefit the world of disability, which is really important, because, as we say disabled lives matter, and they do.

Nadine Vogel: And you know hearing hearing about what you've done what you've accomplished, and what I think is coming down the path.

Nadine Vogel: Just proves that point so to that end, I believe you have some kind of tech cohort that's coming up, I actually think you're partnering with Google or something so, can you share with us a little bit about.

Diego Mariscal: Yes, yes, so I just have to say, this is not a partnership, it is with support from Google to start.

Nadine Vogel: Okay okay.

Diego Mariscal: clarify that um but yeah no we're super lucky to have Google for startups involved in this this tech cohort um, and the reason we have to clarify that partnership pieces, because they have a partnership Program.

Diego Mariscal: That you have to respect that.

Diego Mariscal: They're whole streamline it is.

Nadine Vogel: what is this exactly then.

Diego Mariscal: so this is basically they this tech cohort and i'll get into what that is but this tech cohort it is possible.

Nadine Vogel: okay 

Diego Mariscal: With the support of Google for startups um and we're actually working with them to essentially become part of their partner program, which means that our entrepreneurs will have access to programming their ecosystem all that stuff but there's a rigorous application.

Diego Mariscal: process and all that so.

Diego Mariscal: we're working we're working on making that happen.

Nadine Vogel: Okay 

Diego Mariscal: um. But anyway, so the our core programming right now is our accelerator program which is basically three months.

Diego Mariscal: folks get coaching they get access to classes, they get peer to peer support network they get funding, so we tried to really do kind of comprehensive accelerator program for founders with disabilities and to that end we.

Diego Mariscal: We tend to do theme related cohorts so we had a women's cohort and we also had a DC full cohort and now we're doing this tech cohort with support from Google for startups.

Diego Mariscal: And.

Nadine Vogel: And you always have a company supporting in some way.

Diego Mariscal: Well we're moving towards that hopefully.

Nadine Vogel: Okay.

Diego Mariscal: We didn't we didn't I mean we started working with our first cohort was supported by DC government our second cohort was supported by a foundation, but we want to, we want to make sure we're involving corporations.

Diego Mariscal: As as we continue to grow so.

Diego Mariscal: what's great about working with Google for startups is that.

Diego Mariscal: Their.

Diego Mariscal: um team is involved right, so the the entrepreneurs will have access to.

Diego Mariscal: The some you know, a product mentors ah technology cloud credits, you know and really the exposure that comes with being associated with Google for startups and so that's also an added value that we can bring to the table.

Nadine Vogel: And and and when when when you have folks in this cohort approximately how many folks again, do you have.

Diego Mariscal: So we accept anywhere from 12 to 15 but so far we've gotten about 200 requests per application.

Nadine Vogel: So oh my gosh.

Diego Mariscal: yeah it's gonna be a tough time.

Nadine Vogel: what's the evaluation.

Nadine Vogel: process like who makes that decision.

Diego Mariscal: yeah great great question so um so we have.

Diego Mariscal: You know, a standard application that our Board, which is made up of entrepreneurs and people with disabilities have.

Diego Mariscal: put together, as well as looking at accelerator best practices so there's the first filter is the application process then we do a second round, which is the round of interviews with the 30 finalists then we select 15.

Nadine Vogel: wow and how long does the program last.

Diego Mariscal: it's a 12 weeks so it's.

Nadine Vogel: yeah and what is the goal at the end of that 12 week.

Diego Mariscal: So the goal is really to advance your business forward.

Diego Mariscal: At a significant to accelerate your business hence accelerator.
hey.

Diego Mariscal: To really advance their their business forward, I mean we had we recently did a women's cohort and, you know when you look at.

Diego Mariscal: The the 12 women that presented, you know from their application to the three months it's night and day it's like they're ready mean they can confidently go in to an investor meeting.

Diego Mariscal: Where they can.

Diego Mariscal: confidently you know present to a partner, it really it's really great, and I think part of it is also a huge value that we see is one the coaching component is huge, but the other is being surrounded by 12, 12 to 15 like minded people for three months.

Diego Mariscal: Right and that's a huge deal.

Diego Mariscal: Because entrepreneurship can be lonely right surrounded with people that you can relate to.

Nadine Vogel: And let me, let me jump on that about the loneliness.

Nadine Vogel: Because obviously you're doing this during Covid.

Nadine Vogel: So i'm assuming right now it's virtual has it always been virtual.

Diego Mariscal: know the first the first accelerator we didn't person and we actually were adamant about maybe doing it in person to allow people to really connect and engage.

Diego Mariscal: Covid it for us really I would say, was a blessing, though.

Diego Mariscal: Because we were able to serve more people, and we were also able to make the program more accessible in terms of accommodations that.

Diego Mariscal: So we actually.

Diego Mariscal: will probably do one or two accelerators in person, but they'll be most likely they'll be people that have already gone through our Program.

Diego Mariscal: And we might invite them to come in person and.

Nadine Vogel: Maybe like an alumni.

Diego Mariscal: Yeah.

Nadine Vogel: so i'm pleased you for our listeners if someone is listening and says oh my gosh I want to add to this 200 applications and make it 201 how do they do that and they apply or get in.

Diego Mariscal: touch, yes, so the application is is on our website, right now, I believe, when this episode ends, it will be closed we're closing on a Monday.

Diego Mariscal: Okay, but.

Diego Mariscal: Hopefully i'll send you all the information and, hopefully, you can share it on the listserv put it on social media.

Nadine Vogel: Yeah.

Diego Mariscal: um because we would love to have Members from your Community be a part of this.

Nadine Vogel: Can you just tell everyone with the website is at least.

Diego Mariscal: Yes, yes it's together dash international dot org now but kicker is that together is with a 2.

Nadine Vogel: Number two and then G-E-T-H-E-R dash international www.2gether-international.org.

Diego Mariscal: That are yeah.

Nadine Vogel: Okay excellent so we don't have much time left, but in in in the time we do have, I have two questions one, what do you see the future is for the organization.

Nadine Vogel: And then I just want to end with just some of these amazing awards and things that you've won, but what do you, what do you see the future.

Diego Mariscal: So, really, I mean I started this because I wanted to redefine the way people thought about disabilities and the way people perceive disabilities, so my goal really is that people see disability as.

Diego Mariscal: An asset to business as value to diversity, and so we just happen to be doing it through entrepreneurship, right now, but that may evolve, or you know we may add things down the pipeline it really having someone who.

Diego Mariscal: Richard Branson or the the the entrepreneurs on Shark Tank they all have this ability, but they're not necessarily until recently, they weren't necessarily very outspoken about that.

Nadine Vogel: way.

Diego Mariscal: To me, and what to support the next you know, to find the next billionaire.

Diego Mariscal: Who has a disability, and say that yeah it's not in spite of my disability as exceeded it is.

Nadine Vogel: Because of my disability.

Diego Mariscal: The strength that that.

Nadine Vogel: Absolutely.

Diego Mariscal: that's the future, I see.

Nadine Vogel: In closing, I want to close on this whole interview has been a high for me that I want to close that even a bigger high you have.

Nadine Vogel: My gosh.

Nadine Vogel: You have won so many awards.

Nadine Vogel: you've participated in the global entrepreneurs summit.

Nadine Vogel: you have won awards from the International Council on disabilities, you were the first United Nations World humanitarian so with all of these things just tell us what.

Nadine Vogel: What do they mean to you individually and then, what do you what do they mean, do you believe to just people with disabilities at large, or the impact to the Community 

Diego Mariscal:  yeah.  well.

Diego Mariscal: I mean individually to me, maybe sound counterintuitive but to me individually, they don't really much because it really it's a reflection of.

Diego Mariscal: A lot of people that have been supporting me along the way, and they're not really a recognition of my accomplishments alone their recognition of the people and the team behind me from my parents to other disability advocates who have mentored me and supported me, and so I think that.

Diego Mariscal: to tie it back to the other point which is what they mean for disability community at large, I think I hope that they serve as a reminder that.

Diego Mariscal: really effective transformative change comes from Community and being really.

Diego Mariscal: intentional about that and so um I hope that whoever is is reading or listening to this recognizes that there's a whole.

Diego Mariscal: village behind those those awards, and so the more that you can surround yourself with people that are going to push you but also believe in you, I think, the better the whole movement is going to be.

Nadine Vogel: could not agree more what a what a great way to close out this interview Diego Thank you so so much, I am just loving hearing about everything that you've done.

Nadine Vogel: And everything you're doing and just you know excited to see what the future brings.

Nadine Vogel: I guarantee this is not the last time you're going to hear from me or from springboard I suspect it might be some other opportunities we can connect on but.

Nadine Vogel: For this issue of or this this issue of disabled lives matter, I just want to thank you very much, and I know our listeners are going to very much enjoy enjoy this podcast so thank you.

Diego Mariscal: amazing, thank you for having me, really, really appreciate it.

Nadine Vogel: Absolutely bye bye everybody.

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-Ep28_Khafre_Jay

S1-Ep28_Khafre_Jay

September 9, 2021

Disabled Lives Matter
Season 1, Episode 28
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Khafre Jay

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!

NORMA STANLEY: Greetings everyone I am norma stanley and you're listening to disabled lives matter and my co host nadine vogel couldn't be here today, but we are so excited to be speaking with Mr Khafre Jay, am I pronouncing your name right. Khafre.

Khafre Jay: My dad put the strong E on the end of it.

NORMA STANLEY: Oh, okay.

Khafre Jay: It's K-A-U-F-R-E-E, like coffee.

NORMA STANLEY: Okay, like coffee but K-A-U-F-R-E-E. Okay.

Khafre Jay:  Yeah, yeah.

NORMA STANLEY: I'm bad at pronounciations, but.

NORMA STANLEY: You know he is the executive director and founder of hip hop for change and um he you know, has an amazing organization and.

NORMA STANLEY: Actually, as an initiative dealing with mental health and we want to have a discussion with him about mental health in the black community because what disabled lives matters is all about is.

NORMA STANLEY: You know the intersectionality of black lives matter and people with disabilities, they matter to, and we want to make sure that people.

NORMA STANLEY: understand.

NORMA STANLEY: The viability and the opportunity and the significance of both these communities and how they intersect in many ways and one of those ways is mental health and how we are treated.

NORMA STANLEY: People with disabilities and black people in general.

NORMA STANLEY: Have health issues or mental health issues that.

NORMA STANLEY: they're not recognizing or.

NORMA STANLEY: You know when they do recognize it it's past the point when they should have done something so we want to talk about today with you and i'm so excited to meet you.

NORMA STANLEY: And to learn about what you've been doing them i'm very impressed with your work, I did a little research and check out a couple of videos and like I said, if I love the tedx talk and your talk on food justice cause that is a real situation, you can.

NORMA STANLEY: And you know Robin Hood tax, I mean we can have a little conversation about all of that.

Khafre Jay: yeah.

NORMA STANLEY: You know let's talk about mental health and the black Community because that's a real situation.

NORMA STANLEY: um you stated some facts, and some of these facts I already know, but you know, but I want you to if you have any I can I can put some out here, and you can send it to you, I mean you know have you talk about it but 20% of African Americans are more likely to experience mental health issues.

Khafre Jay: yeah.

NORMA STANLEY: Go ahead.

Khafre Jay: No, no, go ahead go ahead I didn't mean to lean in.

NORMA STANLEY: Basically and that's true, and one of the things that you mentioned in a post that you made recently I didn't even realize is that um.

NORMA STANLEY: You know well that's not true, I didn't realize it I just never really it never hit me until I saw it in in 

NORMA STANLEY: Writing I guess that the African American children are a more likely than other children to.

NORMA STANLEY: have experienced violence and impacts their their mental health as a as they grow up and I grew up in East Harlem Spanish Harlem New York.

NORMA STANLEY: And I saw violence all around me as I grew up I grew up in the hood basically, I never thought about it, when I was 16 I was 16 I might have been 15.

NORMA STANLEY: We lived in the projects and I heard, what I thought were firecrackers so as I went to look out at the people because we lived on the first floor and all I could see was like the lightning of the gun.

Khafre Jay: Yeah.

NORMA STANLEY: They were shooting somebody, I don't know who was I found out, the person who got shot was later, it was a friend of the brother of a friend of mine uh but you know right after that my mother said, we are leaving.  I'm gonna get you up out of here.

NORMA STANLEY: Um so I saw a lot of it my mother coming from the Caribbean my mother kept us kind of sheltered.

NORMA STANLEY: So we didn't get we didn't we weren't out didn't get involved in any of that stuff but I saw it.

Khafre Jay:  Yeah.

NORMA STANLEY: Um you know I think you're right.

NORMA STANLEY: To see that kind of thing all the time, definitely will impact your mental health, I mean.

NORMA STANLEY: Can't event imagine.

NORMA STANLEY: Can you speak a little bit about what you know. Of that.

Khafre Jay: Yeah, yeah you know I mean We grew up in very similar situations, I grew up in the Hunter's Point San Francisco a spot that's definitely not on the tourist map.

Khafre Jay: Even though we have the oldest Opera House west of the Mississippi.

Khafre Jay: But um yeah you know violence was a part of my life and.

Khafre Jay: You know i'm really new to this mental health game, you know i'm really new to this activism game matter of fact, I started my progression even understanding patriarchy as deep as I do now, when I started hip hop for change, you know.

Khafre Jay: starting a social justice org that's rooted in egalitarian practices with a bunch of really bad as activists women around you and and queer folks like i've been coming into my own.

Khafre Jay: learning what our Community really needs you know and learning my Community better than I ever have and that's why I've been stepping into this mental health sphere.

Khafre Jay: Because I just realized that I have ptsd you know i'm saying for the last few years and I grew up in that, and I was beaten up at gunpoint twice by the S-F-P-D before I was 17.

Khafre Jay: You know first day I cashed my first paycheck and then three friends work for the SF league urban gardens and we went to the bank, at the same time to cash our checks and somebody said these 15 year old black men are robbing the bank.

NORMA STANLEY: Oh, no.

Khafre Jay: And so I, yeah so I know what the SFPD looks like when they think you're robbing a bank.

NORMA STANLEY: Yes.

Khafre Jay: It's very violent, but I also grew up around a lot of violence, you know what I'm saying I also grew up with a lot of the other issues in the black and brown community.

Khafre Jay: out here, and you know I just learned this statistic when I started hip hop for change that 30% of kids in oakland have been diagnosed with ptsd by the CDC in 2012, and this is real, you know and.

Khafre Jay: One of the things we've done with our education program is to make sure that all our teachers are trauma informed.

Khafre Jay: And that's really, really important if we talk about the ways the school to prison pipeline, you know metastasizes.

Khafre Jay: it's in the way these teachers view these kids view them as defiant rather than you know going through some issues you know i'm saying so I really feel like.

Khafre Jay: The one thing that the White supremacy does to black and brown peoples and puts us on edge, it puts us in survival mode cortisol fight or flight all this other stuff.

Khafre Jay: But it also it also changes the way that people view us right through this white supremacist lens stereotypes, it's even worse when you look hip hop right.

Khafre Jay: Now you know and your number one media representations are that of the stereotypes that suburban white men who, by 75% of hip hop they want to see about us, you what I'm saying.

Khafre Jay: As it's always been the case so you have a lot of kids growing up in violence right there also some of them are hungry.

Khafre Jay: Right, some of them are vitamin D deficient.

Khafre Jay: You know what i'm saying, which also helps to lessens your mental health.

Khafre Jay: Excuse me, but.

Khafre Jay: But you know I think I think the ways in which we view these black and brown kids is not through a lense of empathy and the lens of their own humanity we've viewed them as what we've been conditioned by.

Khafre Jay: And that exacerbates mental health that sends kids to the prison through the schools and it manifests in every social interaction that our young black and brown kids especially who are hip hop culture deal with today.

Khafre Jay: And so I started this nonprofit and it's built off of grassroots street team model I was the first black coordinator for Greenpeace I ran their entire Bay area fundraising team and I took that model.

Khafre Jay: And I meshed it with hip hop, so in that time we can pull it over 900 people with the grassroots job wearing this in white supremacy T shirt in the full white spaces.

Khafre Jay: Talking about race having about 30 to 50 conversations a day and it gets hectic.   We talked to a lot of really beautiful people, but we also get cussed out.

Khafre Jay: We also do called the "N" word.

NORMA STANLEY:  That's pathetic.

Khafre Jay: Oh yeah it comes out of them, you know what I'm saying.

Khafre Jay: But you know I realized quickly that when you have the only brown diverse grassroots canvas team.

Khafre Jay: You got to deal with some different things you know i'm saying you got to deal with the issues from these communities and one of that is mental health.

Khafre Jay: And i'm saying one of that is realizing that the reason why people are late sometimes is not just because they don't care you know what I'm saying they might be dealing with other things you know and, but I think I think out what is the statistic i'm trying to remember.

Khafre Jay: there's about there's about 16% of black people that report, having mental illness.

Khafre Jay: Yes, I think that is a low number I think it's probably under reported to be quite honest.

NORMA STANLEY:  I agree.

Khafre Jay: Yeah and so we're working with this beautiful diverse grassroots street team and i've got people on my team who have disorders or have different mentalities bipolar disorder or whatnot i've had a person schizophrenia on my team.

Khafre Jay: And these are like these, these named illnesses that people have told me about you know what i'm saying, other than that people are just stress and stress.

NORMA STANLEY: Stress will do it.

Khafre Jay: Yeah and i'm not a therapist i'm not a psychologist.

NORMA STANLEY: I totally get it stress will do it, I ended up with epilepsy at 48 years old, adult onset epilepsy due to stress.

NORMA STANLEY: I didn't know it was under stress, I mean I was just doing what I usually do.

NORMA STANLEY: Doing everything raising my daughter with disabilities, trying to.

NORMA STANLEY: You know, build a business and running I just do a lot because that's who I am but I was putting myself under unnecessary stress I didn't realize.

Khafre Jay: yeah.

NORMA STANLEY: I'm being very particularly now, about how I take care of myself, so if it ever comes back by the grace of God i'm no longer medication for it.

Khafre Jay: Yes.

NORMA STANLEY: You know, so that hit me between 40 I would think that was 48.

NORMA STANLEY: And I was on medication for about five years and I couldn't drive and do the things that I wanted to, they take your license if you have.

NORMA STANLEY: You know, so those are things that people tend not to think about and then, when you come in situations where you know.

NORMA STANLEY: Where our young black men are being arrested and and sometimes killed because they may have you know ptsd or autism situation and sensory situations there they don't understand and the cops are not trained.

NORMA STANLEY: These things and our children are being killed as a result and so we have to address, we have to address it from every level, you know from home, all the way to the street.

NORMA STANLEY: You know this is a real thing.

Khafre Jay: I think you also bring up a really important point, you know we put the we are taught, you know as poor black people to put the world on our shoulders right.

Khafre Jay: And we have to make it through, we gotta fight a nothin promised and aint nothin given you know there aint no time to cry get up you know you gotta.

Khafre Jay: get up and punch them harder, you know we are taught to be superheroes.

Khafre Jay: And and and and and that also gets wrapped up in patriarchy a male toxicity that I also fell into, when I was 16 - 17 trying to find my power ended up gang banging a bunch, you know what i'm saying.

Khafre Jay: And going the wrong way it took me a long time of introspection and, fortunately, you know wrapping and MCing and gave me that vehicle for introspection to get out of that.

Khafre Jay: But all that is what we're dealing with we're dealing with the superhero complex and a big need for a space to just breathe and the coping mechanisms to deal with our own trauma.

Khafre Jay: And I see that coming out in people, I see that i'm dealing with a average age of 23 for our canvases.

Khafre Jay: And they're finding themselves at the age where I found myself, so I need to provide them anything I possibly can to make sure their whole intact people and that's really what i'm working with.

NORMA STANLEY: Amen we're gonna take a quick break and come right back and speak a little bit more with Mr. Khafre Jay.

Khafre Jay: right on.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

NORMA STANLEY: Well, we were just talking about the whole you know mental health issue and and and the lack of sensitivity that people who don't understand African Americans and what the trauma they have been through and a few understand a few understand quite well you know and a few don't understand.

NORMA STANLEY: I mean, let's not even get into that conversation um.

NORMA STANLEY: But yeah like you say there the.

NORMA STANLEY: Black man is not allowed to have the vulnerability to cray and to feel and to to like you said it, that black men and black women are expected to be super people.

NORMA STANLEY: And to just deal with whatever comes your way just just deal with it and keep moving, but you know that manifest itself physically, as well as mentally it does, it has to go somewhere all that stress and all that you know trauma and it has it and then we end up with issues.

NORMA STANLEY: Sometimes physical, sometimes mental and.

NORMA STANLEY: If we don't have people to talk to if we don't have people to understand and like you say just kind of debrief at times.

NORMA STANLEY: It could cause a whole nother set of issues and our children are growing into this, so your organization tell us more about what your organization is doing and.

NORMA STANLEY: You know who are some of your supporters.

Khafre Jay: yeah you know first off I just got to break down paradigm with what we are dealing with and why, after the '96 telecommunications act.

Khafre Jay: It allowed for the corporate consolidation of mass media right now three media companies times sony and universal own 90% of the means producing hip hop.

Khafre Jay: And hip hop's culture and hip hop's depiction, they own that, and you know they're million billion dollar industries, so they only place their money on what's going to make the best bet for them to make money on.

Khafre Jay: It right now, you know 80% of the audience for hip hop is suburban white men almost you know i'm saying between 18 - 24 buys about 75% of hip hop.

Khafre Jay: And they you know, in the 80s, that was fine when fight the power was the number one song and hip hop is that beautiful bridge.

Khafre Jay: But you know the industry found out it's really difficult to sell diversity diverse culture, you know what  i'm saying.

Khafre Jay: and selling a culture where people have all these cultural norms and values and rules.

Khafre Jay: They figured out these white kids don't even know what's going on, and you know the easiest things to sell in America is sex drugs and violence, you know the problem is is people can play hip hop with pure blackness you know I'm saying.

Khafre Jay: And these corporations only invest in an artist and they put them on the cover of the magazine, and they put them.

Khafre Jay: On this and they put them on hip hop dx and all the they have the whole machine to make these artists So while we have you know YouTube and tick tock.

Khafre Jay: it's about bandwidth we don't ever have the same band with the $7 billion industry has so they've taken our depiction and they've turned it into stereotypes like they've always done with black and brown people in all white and controlled media period.

Khafre Jay: The problem is, is now people believe that so our kids are being treated thusly when I walk down the street.

Khafre Jay: And I don't have my daughter with me people grab their babies and I tell them I don't eat babies i'm full you baby's safe, you know what i'm saying, because I gotta say something.

Khafre Jay: But I have the coping mechanisms to be able to deal with those interactions a lot of our kids don't nor, should they have to but regardless of scaring white folks you know what i'm saying.

Khafre Jay: Because of their internalized white supremacy, I think the biggest thing is, is that, if your hip hop culture right.

Khafre Jay: Meaning you walk it you talking it you dress it, you paint it you think it you dance it you're hip hop culture.

Khafre Jay: You should be able to have access to that culture into the cultural expression to the forums and to the economy of hip hop without being exploited by the music industry that's not FUBU, it's not for us, or by us.

Khafre Jay: So what I did is I created a non profit 501 C three Community controled platform.

Khafre Jay: To read to recreate the needs of producing hip hop for local local hip hop.

Khafre Jay: You know, we have all these artists that are so powerful and they have important narratives but they can't get people to come to their shows they don't have the budgets for them, they don't have the funding and all that.

Khafre Jay: And we lose the economy around that so we started a grassroots street team stand out there, just like Greenpeace and all them, but we flag you down say talk to me about white supremacy.

Khafre Jay: And then we talk to you about the cooperation of hip hop and the racism and oppression and the criminalization of black and brown youth through that and that's what we get most of our money from those communities that are afluent.

Khafre Jay: We have 50,000 conversations about who we are, every year we take that money back, we put into educational where we're getting local hip hop artists fingerprinted TV testing trauma informed and in the schools we taught 26,000 kids K through 12.

Khafre Jay: The history of hip hop that's rooted in peace love unity, and having fun and really letting these kids know they aint doing nothing different than their parents did their ancestors they come from an unbroken chain of excellence right.

Khafre Jay: And then we teach them how to actually wrap break dance FUBU beat and DJ and, lastly, we throw fat hip hop shows where we get big organizations like.

Khafre Jay: Greenpeace, Sierra club, to sponsor so it's free and for all ages, we just had our environmental justice seminar with black thoughts, side rock from from dead prez and.

Khafre Jay: Matthew Tejada from the office of the EPA last year we had to Ilhan Omar's daughter on our panel and we invite.

Khafre Jay: Local environmental justice orgs who want to come table and connect to these.

Khafre Jay: People who create these free all age platforms to create the economy and also to pass around important issue so we're taking the game back and we're just asking people to go to hip hop for change.org and join the fight for the culture.

NORMA STANLEY: Well, I will be one of your people. Because.

 

Khafre Jay: Yes, Yes.

NORMA STANLEY: Because I mean, I just love it I know anything we need to do to say take back our narrative and make sure that people understand actual power, you know, and we have to, we have to create it.

Khafre Jay: Yes.

NORMA STANLEY: We have to do it ourselves and not so much depend on anybody else to do for us do it ourselves, and I love what you are doing and I love you know I don't know if you have any disabled rappers, but.

NORMA STANLEY: You know, we've got some for you.

Khafre Jay: yeah yeah.

Khafre Jay: there's there's my man.

NORMA STANLEY: Is a place that you know.

NORMA STANLEY: And that's got a place in my heart and nadine's heart and we want to make sure our community is included.

NORMA STANLEY: So you have any artists who have disabilities.

NORMA STANLEY: In additionl to mental illness or challenges are there any that you know of do you know the mass of people I can introduce you to.

Khafre Jay: This is an amazing man, named leroy who runs a nonprofit called crip hop.

Khafre Jay: And he runs a community.

Khafre Jay: Definitely able people that are wrapping.

Khafre Jay: break dancing and doing all kinds of stuff.

Khafre Jay: yeah he's a cool cool guy and really stands up for the culture,you know what I'm saying and that's The one thing it's like people hit us up and they're like you know hip hop artists like this, and this and that like yeah because hip hop is the Community.

NORMA STANLEY:  It's everything 

Khafre Jay:  Yeah, it's everybody like so yeah you know. You know pride SF hit us up and we got PRIDE artists, you know, we had a Spanish speaking delegation go down to El Salvador like it's you know it's nothing we hip hop is everybody, you know so yes everybody's rapping in the hood.

Khafre Jay: everybody's talking and that's the thing it's like that's why hip hop is not a fad.

Khafre Jay: And disco actually went out because disco you had to dress up and have nice clothes to go to it and whatnot you had to have a whole band, and what all this other stuff but hip hop was created by people who had nothing you know what I'm saying, and they turn nothing into everything.

Khafre Jay: Right.

Khafre Jay: And that's why I table that's why that's why it is the largest organizing cultural force that humanities ever created, it will be cool of us to take it back you know because they're rappin in the streets again, right now, the president of Thailand is rapping, they're rapping in Nambibia they're rapping everywhere.

NORMA STANLEY:  Everywhere.

Khafre Jay: You know so so and that's the thing we have to understand that hip hop is not what corporations, you know, make it out to be you know we all know, taco bell you know sucks but we don't get mad at Mexican people because taco bell sucks. right.

Khafre Jay: You know what I'm saying, and I think right now we're getting mad at hip hop culture.

Khafre Jay: Because corporations don't do it right, and I know that our young kids on the ground, regardless of what intersection they're in they're still doing it the same and rapping has never changed on the ground.

Khafre Jay: And hip hop has this nugget of self affirmation, which is why there's all these marginalized communities.

Khafre Jay: falling into it, because it's one of the first time that young kids get to deal with the concept of self affirmation, no matter what, no matter how the Lord built me.

Khafre Jay: You know i'm saying I need to grab this microphone, no matter how the Lord built me i'm gonna move and i'm a rock and.

Khafre Jay: i'm a going to gig you understand, and anybody can own that space and not to mention the fact that that expression is one of the most healing things that you could possibly possibly do.

Khafre Jay: yeah I mean I could just I could proselytize all day about hip hop.

NORMA STANLEY: Well I love it I wish I wish we had more time, but i'm definitely gonna be in touch with you about some opportunities, because you know I just believe that you know there's nothing there's no coincidences it was it was meant for us to meet through Ivette Lopez and and and and we're looking forward to do.

NORMA STANLEY: What we can to help you move your your mission forward I love what your mission says to so thank you so much for taking time out of your busy schedule to be a part of disabled lives matter today and i'm looking forward to continuing the conversation.

Khafre Jay: right on Thank you all so much for having me make sure you all go to hiphopforchange.org or subscribe to our newsletter will keep up to date with the culture, what we're doing and what we need, so we can take back our culture and spread nationwide all right y'all.

NORMA STANLEY: 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-Ep27_Bishop_Dedric_Avery

S1-Ep27_Bishop_Dedric_Avery

September 2, 2021

Disabled Lives Matter
Season 1, Episode 27
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Bishop Dedric Avery (aka Oba Chikelu)

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!

NORMA STANLEY: All right.

NORMA STANLEY: Greetings everybody, my name is Norma Stanley I'm co host of disabled lives matter our regular co host ms. nadine vogel couldn't be here today, so I am kind of pitching in.

NORMA STANLEY: and taking the reins on our interview so today, we are going to be speaking with the awesome Bishop Dedric Avery, also known as oba chikelu.

NORMA STANLEY: Who is a scholar and author.

NORMA STANLEY: Someone who I greatly admire, he is the senior pastor of salt and light truth Center, which is based in decatur Georgia and he is a spiritual leader.

NORMA STANLEY: Progressive non traditional type of spiritual leader who shares information with his congregation about empowerment and enlightenment and.

NORMA STANLEY: Other like you know and enrichment, which for my company which is called e-e-e lightning which.

NORMA STANLEY: e-e-e marketing stands for enlightened empowered and enrich we're on the same page in that area, so I am so excited to have him share with us today about.

NORMA STANLEY: You know his experiences um and becoming someone who acquired a disability and how that has changed his life what he's doing.

NORMA STANLEY: To address some of those issues as an advocate Community advocate and as someone who's you know walking the journey now through this whole process so welcome to disabled lives matter Bishop avery.

Oba Chikelu- Dedric: i'm so glad to be here.

NORMA STANLEY: Well, you know i'm and I first met you, you were a young man.

NORMA STANLEY: young man who was doing your thing as a pastor.

NORMA STANLEY: And and.

NORMA STANLEY: You did not have a disability, at that time but since then, you have aquired one this was how many years ago, tell us a little bit about that experience and what happened.

Oba Chikelu- Dedric: um it started.

Oba Chikelu- Dedric: In 2015.

Oba Chikelu- Dedric: I was volunteering at a local high school.

Oba Chikelu- Dedric: In their football program as the chaplain.

Oba Chikelu- Dedric: One of the initiatives the plans that I had was to reach out to the schools and the businesses and different things and create collaboration and I was volunteering.

Oba Chikelu- Dedric: And it was a particular football game on a Friday night, it was I believe September 9 2015 i'm not sure what exactly the date but.

Oba Chikelu- Dedric: The first play of the game I just prayed with the team that they had no injuries or that they'd be covered throughout the game, and the first play of the game two of the players.

Oba Chikelu- Dedric: ran up on the side of the field to tackle one another and they rolled into my legs and that was when my journey began because I heard snap crackle and pop.

NORMA STANLEY: wow

Oba Chikelu- Dedric: and, in my mind psychologically I didn't know what was going on, because I just knew that my knee or something was just sticking out of the out of my skin and it was crazy.

Oba Chikelu- Dedric: It took them an hour to get me off of the football field to get me into an ambulance to get me to another ambulance and.

Oba Chikelu- Dedric: that's when that's when my journey began 2015.

NORMA STANLEY: And one of the things that i'm I was very impressed with the Church, that it was such an accepting um Ministry for people with disabilities.

Oba Chikelu- Dedric: Yes.

NORMA STANLEY: my daughter Sierra is a wheelchair user and I've attended many larger churches that weren't as welcoming um you know to our children, sometimes and make some noise, maybe different things like my daughter sometimes love singing she loved the music.

NORMA STANLEY: As you pull out of her seat and crawl up to the altar.

NORMA STANLEY: To be closer to the.

NORMA STANLEY: Music and a lot of services would nnot accept that so.

NORMA STANLEY: I really appreciated about your service in your ministry um tell us about what that.

NORMA STANLEY: The Church Community when it comes to people with disabilities.

NORMA STANLEY: You would think that would be more what's the word accepting and welcoming should we be feelings were those of us who have children, like mine, feel more comfortable doing services online than being their with the congregation.

Oba Chikelu- Dedric: I would say that.

Oba Chikelu- Dedric: I will say that the teachings of a spiritual Community sets the tone as it relates to the treatment of others and the teachers of our ministry week we focus on accepting and acknowledging everyone unconditionally.

Oba Chikelu- Dedric: It that it's a skill set, you have to develop that and being able to enter the inner act and engage people from different cultures perspectives.

Oba Chikelu- Dedric: Whether they have disabilities mental illness, whatever the situation is we are teaching that every humanbeing is a manifestation of the creator and so when we engage one another we're actually engaging God.

Oba Chikelu- Dedric: And so, when we do that it heightens the level of sensitivity to the needs of people and and I saw that even before I even attain this this new direction of life.

Oba Chikelu- Dedric: You and I had a lot of intensive conversations about what can we do to serve the disabled Community we'd already kind of started doing some things right, I didn't really feel hip.

Oba Chikelu- Dedric: You know, hypocritical by having the injury and being in the Community myself, because I was always supportive of the Community.

Oba Chikelu- Dedric: So the teachings of the environment, really sets the tone for the treatment of the environment. 

NORMA STANLEY: mm hmm. That is important, is it comes from the head and and so you know those are the kind of things that I don't think a lot of ministries realize that they may they may be something that they are not recognizing.

NORMA STANLEY: As the leader of that particular ministry, that is not allowing that opportunity to to open up to those of us children like mine um you know I.

NORMA STANLEY: that's one of the things that will hoping to make some changes in that area from a spiritual component, as well as a Community, because.

NORMA STANLEY: faith is a big part of how parents like myself manage you know if we do a lot of praying and we depend on that that strengthen and that body of people to support and sometimes when you see that they just Basically, it seems, in some cases that i've been exposed to that you know.

NORMA STANLEY: we're more of a nuisance, it seems.

NORMA STANLEY: unwelcomed and that's something that I hope.

NORMA STANLEY: to see change as a they become more aware of how the ministries come off to others like families like mine.

Oba Chikelu- Dedric: You know, society has a way of setting pseudo standards of what's acceptable.

Oba Chikelu- Dedric: In society has is has it all figured out as to how we're supposed to look.

Oba Chikelu- Dedric: You know the size, the shape the whole nine and if anyone doesn't fit in that little scope.

Oba Chikelu- Dedric: Then we are faced with many different forms of reaction and rejection.

Oba Chikelu- Dedric: And, even in the Church, because even though.

Oba Chikelu- Dedric: You really find out what the real purpose of a church is when you have people in need, or have needs and I find that no one wants to be inconvenienced.

Oba Chikelu- Dedric: No one wants to kind of kind of inconvenience themselves for those who have needs you know, are you going to even, even in the scriptures when Jesus was killing they made provisions and they could demand and and brought him down through the ceiling.

Oba Chikelu- Dedric: Minister, whereas you know people won't even open up aisle for a person in the church today, so that tells you just kind of the world we're in and just this is how real this thing that is in the challenge, even in the spiritual houses that the disabled community has.

NORMA STANLEY: Absolutely.

Oba Chikelu- Dedric: Because I never wanted to exploit the situation because you have a lot of ministries, that would.

Oba Chikelu- Dedric: They would bring in disability members, but they will try to set it up for monetizing.

Oba Chikelu- Dedric: You know we're going to get this big grant for the Church, because now we have disabled members, you know as a good way to make some money.

Oba Chikelu- Dedric: And, and I never wanted to do that I never wanted to exploit anything for monetization.

Oba Chikelu- Dedric: Is you know that's not the right heart and that's not of God.

NORMA STANLEY: You know the disabled lives matter podcast is.

NORMA STANLEY: You become a movement, along the lines of you know, black lives matter but to people with disabilities, because there's an intersectionality when it comes to African Americans.

NORMA STANLEY: You know, basically, the 25% of population with disabilities and you know that's a major major component and people are going to have to realize that.

NORMA STANLEY: And there's so much issues when it comes to mental illness and mental health.

NORMA STANLEY: And issues that are not being addressed when it comes to some of these people who are being arrested and and not not paying attention to the fact that they may have some ptsd issues they may have some you know.

NORMA STANLEY: All sorts of issues when it comes to sensory things that they're doing and they're arresting them and end up paying attention so we're just trying to bring awareness to.

NORMA STANLEY: intersectionality of things like that, so that people can be aware and and hopefully make some positive impact and do things differently.

NORMA STANLEY: That could greater enhance enhance the quality of life for.

NORMA STANLEY: Families like mine and people with disabilities individuals as well as families, and I know that that's something that that's very important to you and I know that some issues that you've recently come across since you started this journey just in daily life that.

NORMA STANLEY: You never even thought about probably before could you share a little bit about something as basic as going grocery shopping.

Oba Chikelu- Dedric: Sure um definitely until I became disabled, I was very unknowledgeable i've always been sensitive but unknowledgeable of the reality.

Oba Chikelu- Dedric: of people who are physically challenged until I had to do tasks as simple as going to the grocery store.

Oba Chikelu- Dedric: You know a lot of people take it for granted, why just go over here and pick up some things and go home and it just sounds really easy.

Oba Chikelu- Dedric: But for people like me, I have to plan out the opportunity to go to go to stores, first of all I have to find the grocery stores that have the scooters for people like myself who have impairment in walking.

Oba Chikelu- Dedric: Then you have to find the locations that have the ones that actually work or operable that's another one, because they might have four sitting there, but only one works.

Oba Chikelu- Dedric: So you see that that that particular store or franchise just did what was you know is being asked of them to do.

Oba Chikelu- Dedric: They did the bare minimum, but there's no sense of maintenance no sense of reception no sense of sensitivity of you know nothing you know so.

Oba Chikelu- Dedric: it's very difficult, not only getting the groceries putting them in the car but going home and creating your own independent regiment of how to unload the things that you have.

Oba Chikelu- Dedric: That you bought from the store those little simple things that people take for granted are monumental task for people like myself.

NORMA STANLEY: yeah I can imagine, I know that I had sustained an injury that I don't know exactly where came from it something in my arm and the doctor told me it was um.

NORMA STANLEY: I guess it was something that had come over time because I pick up and puts sierra's wheelchiar in and out of my car, since she was you know, having to use a wheelchair and i guess.

NORMA STANLEY: It wore on my shoulder, and it was very painful and that same thing happened, I could not collect groceries the way I used to and had to be very particular of things that I was lifting and how I lifted them so that I wouldn't reinjure my arm and because I need I need everything to pick up sierra's wheelchair.

NORMA STANLEY: And you know you don't think about these things, and those are some of the things that.

NORMA STANLEY: they're trying to generate awareness about through disabled lives matter i'm the kind of business that nadine vogel of springboard consulting as she does i'm.

NORMA STANLEY: Working with companies to understand the workforce and the marketplace when it comes to people with disabilities and the kind of work that I do of.

NORMA STANLEY: multicultural communications, and you know and helping companies understand diversity equity inclusion and we both have a similar.

NORMA STANLEY: mission in you know, helping people understand the viability of this community and why they need to be paying more attention to making things.

NORMA STANLEY: Better because of who we are as a population and how important we are to the population anybody can acquire one at any time, so you can't ignore.

NORMA STANLEY: This population we're gonna take a quick break and then come back and talk a little bit about you know some of the things that that you're doing as an individual in through your ministry and just continue the conversation with bishop dedric avery.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

NORMA STANLEY: All right, and we are back speaking with Bishop Dedric avery, also known as Oba Chikelu, and like I said he has a very.

NORMA STANLEY: Non traditional church ministry in decatur Georgia and i'm I am actually one of the Members and I just you know wanted him to share because there's some and i've been to some large churches in the mega churches that i've been to some small ones and.

NORMA STANLEY: Some of them have not been as as as welcoming and and that was something that drew me and it drew my daughter, because I can tell when she's not comfortable.

NORMA STANLEY: And she can she can tell when people don't make her feel comfortable she lets me know, and so you know, so this particular you know the space at.

NORMA STANLEY: salt and life truth Center provides is something that you know I would love for families to experience and you know the families.

NORMA STANLEY: stay home because we don't want to we don't want to bother anybody, and some of our children, make a lot of noise when they are having fun when they are enjoying themselves just noisy they can't help it they that's how they express themselves, they do things that are not what.

NORMA STANLEY: Typical children would do and i've come across a lot of situations we have heard some horror stories with churches have actually put member that have put children like mine out.

NORMA STANLEY: um you know and things i've heard some stuff I mean you know lived experiences of people who, I know, so you know so it's very important to me to try to make an impact.

NORMA STANLEY: For to the just the work that you're trying to do with the Community to change change the mindset and the approach some ministries have to people with disabilities.

NORMA STANLEY: The younger ones.

Oba Chikelu- Dedric: yes.

Oba Chikelu- Dedric: Once again, we have to realize that we're in a new paradigm is a paradigm shift and I always say this so that people can truly understand what's being said.

Oba Chikelu- Dedric: there's a reset that's happening, you know with the shutdown and the virus that we have and some of the things that have been ushered in.

Oba Chikelu- Dedric: It's the transitioning.

Oba Chikelu- Dedric: And the way things have been done, the institutional mindsets are there they're going out they're phasing out people are more independent and and thinking they're more.

Oba Chikelu- Dedric: focused on self care growing trying to figure out things they've taken advantage of opportunities of seeking counsel.

Oba Chikelu- Dedric: Life coaches and different things, because people are tired of.

Oba Chikelu- Dedric: being stuck and and one of the things that comes with that is the revolutionary mindset of how we are to see humanity.

Oba Chikelu- Dedric: The way we see humanity is is is a lot more upgraded than it was before.

Oba Chikelu- Dedric: People are starting to foster more mutual respect for one another, you see a lot of organizations that are in activism and advocacy for the small person.

Oba Chikelu- Dedric: And we, we see a new.

Oba Chikelu- Dedric: Interest infrastructure being created.

Oba Chikelu- Dedric: it's in this small stage which is growing it's going to grow even more, because when you look at the disability community, it is really a force to be reckoned with.

Oba Chikelu- Dedric: But they don't acknowledge it because it does not produce revenue does not produce an eco economic.

Oba Chikelu- Dedric: influence, and I would say that's, the main thing.

Oba Chikelu- Dedric: Because they're more disabled people than there are probably any other group of people in America at least.

Oba Chikelu- Dedric: But we don't produce the economic strength that will make the legislators or anybody else really look twice matter of fact, they are putting money into the disability community and they see it as a liability in many cases.

NORMA STANLEY: and that's because they don't understand that the monetary value, because you know just in the U.S, alone, their are 64 million people in the US alone, you know with disabilities and you know 1.3 or so billion people around the world, but the economic when you when you add their friends their friends and family network.

NORMA STANLEY: that's huge you know when you talk about globally, that's like eight trillion dollars.

NORMA STANLEY: mm hmm I mean you know, and when the US I forget about eight I forget what the is what isn't us but globally is about 8 trillion 

Oba Chikelu- Dedric: wow 

NORMA STANLEY: when you add the family and friend network.

Oba Chikelu- Dedric: Right. 

NORMA STANLEY: and you know, we are all over the world and it is a lot of money there they just have not figured out how to focus it because they didn't understand that about the black Community either or the Hispanic community.

Oba Chikelu- Dedric: Right.

NORMA STANLEY: So we started getting really vocal about the fact that we need to be included and that's what the disability community is doing now, and very vocal.

NORMA STANLEY: about being included and that's where they're starting to listen it's still not there, what they need to be starting to listen and pay attention, which is what we have to do.

Oba Chikelu- Dedric: Any movement, you have to assess the what if, as you approach the power structure and speaking truth to power to convince them of the need of this group that's that's in activism.

Oba Chikelu- Dedric: You have to present the case that if we were to come together in unity and do this, this is how would it impact, the bottom line.

Oba Chikelu- Dedric: of your structure you know if we can ever come together and have unified efforts but there's a lot of division even how they perceive the disability community.

Oba Chikelu- Dedric: You have the profound, then you have those who are functional you have so many different types of when you have even in your in your retail settings you have four handicapped parking spots, but you have a parking lot full of handicap stickers.

Oba Chikelu- Dedric: You know, so what is truly disable you know what is truly a true member of the disability community, and so, when you are able to even define that it will probably bring bring some definition to the struggle.

NORMA STANLEY: And not unification is definitely going to be important and that's one of the things that we're trying to help generate awareness about because, again, the.

NORMA STANLEY: various factions is you know down syndrome community and there's the autism community and the.

NORMA STANLEY: cerebral palsy community in the mental health community and but it's one Community is the visible and the invisible and it's but it's really one community.

NORMA STANLEY: And what I find sometimes is that you know each community content okay autism, is where everything is when you hear disability it's were you go to automatically.

Oba Chikelu- Dedric: right right.

NORMA STANLEY: And, and that is something that usually always bothered me  becuase.

NORMA STANLEY: My daughter has cerebral palsy. You know.

Oba Chikelu- Dedric: It depends on which wealthy people have children that are affected.

NORMA STANLEY: that's true too that where the attention goes.

NORMA STANLEY: A lot so it's a struggle and it is almost an uphill battle, but.

NORMA STANLEY: that's life and you just have to keep struggling and pushing pushing past the obstacles, which is what you know shows like disabled lives.

NORMA STANLEY: matter podcast is trying to do, push past the obstacle and talk about opportunities that people with disabilities are bringing to the table and and contributions that they are bring to the table that.

NORMA STANLEY: General media tends not to talk about as much, there are some people in the Community, what so powerful amazing things the A-D-A came to because of revolutionaries.

NORMA STANLEY: that's right, you know judy heumann and the people who bought for and crawled the steps you know when they couldn't walk to the protest, so it could come into to being if you saw the the the netflix documentary crip camp if you haven't seen it check it out.

Oba Chikelu- Dedric: Oh crip camp, okay.

NORMA STANLEY: crip camp that's where it all started at a camp, some of those counselors who worked as counselors at Camp called camp Jened

NORMA STANLEY: Who moved into activists for the A-D-A.

NORMA STANLEY: And so it's a powerful of powerful movie but you know i'm excited about you know, like I said just knowing the fact that.

NORMA STANLEY: becoming a leader in this area and and working towards the goal of making positive change, which is what we're trying to do an individual areas.

NORMA STANLEY: So tell us you know, in addition to being a pastor you also an actor, you also a businessman tell us some of the areas that you would really like to make some impact as you move forward.

Oba Chikelu- Dedric: Uh listen everything that i'm about of I first of all want to put my emphasis on modeling.

Oba Chikelu- Dedric: The reality of a disabled person in a victorious state.

Oba Chikelu- Dedric: A person who is definitely persevering through the disability to produce and maintain a certain excellence in life.

Oba Chikelu- Dedric: to kind of regress a bit when I initially was told by my doctor that I would never be able to walk again in the normal normalcy of other people, I had to make a decision at that time whether to quit roll over die or to fight.

Oba Chikelu- Dedric: And I realized that in many of the things i'm involved in i'm in leadership and people are watching how I negotiate.

Oba Chikelu- Dedric: My the things that I do you know how I handle things and.

Oba Chikelu- Dedric: Just just just that whole strength piece.

Oba Chikelu- Dedric: So you know with with the with the spiritual Center it's the same thing teaching, but then modeling perseverance showing people how to maintain.

Oba Chikelu- Dedric: Who, you are in the midst of challenges, not losing your composure losing your perspective or your worldview because of what's going on in your life and then even as a writer.

Oba Chikelu- Dedric: That deals with that.

Oba Chikelu- Dedric: I happen to be consistent as well you know going to the meetings and being visible in in in and showing that you are just as functional as anybody else it takes a little bit more effort but that's part of the fight, you know.

Oba Chikelu- Dedric: The fact that you have to show up for the fight, you know.

Oba Chikelu- Dedric: I go to the water aerobics for therapy.

Oba Chikelu- Dedric: I go to strength training with my personal trainer just trying to be functional and fight the fight, you know and show people.

Oba Chikelu- Dedric: That regardless of what is happening that I have a strong mental perspective and optimistic perspective as to how to still get the results in life and fulfill your mission and assignment.

Oba Chikelu- Dedric: You know, without quitting or showing that you know you can handle the situation.

NORMA STANLEY: I agree, I when people are always telling me how strong I am and they're so amazed it's like you know i'm not doing anything else other than trying to have my daughter have the best life possible so it takes a little bit more work because she's full care.

NORMA STANLEY: But I don't want her to miss out on anything so i'm not doing anything more than any other mother would do.

Oba Chikelu- Dedric: But I would tell you norma, you are a source of inspiration for a lot of people, the fact that you commit your life, to make sure that your daughter had a normal life.

Oba Chikelu- Dedric: You sacrificed and now you're at a place where you are operating in your endeavors but you still you didn't leave the first love.

Oba Chikelu- Dedric: Even though you're doing your your businesses and different things but your heart still goes back to your daughter, and the disabled community, so you are to be honest, if I have flowers right now given to you right now.

Oba Chikelu- Dedric: You certainly.

 

NORMA STANLEY: Youknow  just do it, you know that's what my heart to do and and and that's what I believe my purposes is to use my gifts and talents and skills, whatever those are.

NORMA STANLEY: to generate awareness about this Community, and all that it brings to the table and it brings some powerful talents and abilities and skills and contributions that people don't talk about people in that really sharing and we need to just need to know.

NORMA STANLEY: I was just talking with Ivette a bit earlier about the.

NORMA STANLEY: The the Paralympics were not part of the Olympics, they weren't shown on TV.

NORMA STANLEY: yeah, why not.

NORMA STANLEY: Right it doesn't make any sense.

NORMA STANLEY: Those people work really hard to train.

NORMA STANLEY: They want to be seen to.

Oba Chikelu- Dedric: That's right. 

NORMA STANLEY: And they didn't make a point to show them and that's just unfortunate so those kinds of thing's just have to change.

Oba Chikelu- Dedric: What would have to happen is the regular Olympic athletes would have to to go into activism for that.

NORMA STANLEY: yeah.

Oba Chikelu- Dedric: On that level, they will have to be sacrificial to say hey we're not going to do this until you do that for for that Community as well.

Oba Chikelu- Dedric: I don't know if anybody ever think that big, but it would have to be people that will stop the process of the regular Olympics, so that will give attention to the spectrum, from.

NORMA STANLEY: Which is what's happening now, unfortunately with the whole what happened to George floyd and everything and now people are starting to realize that racism really does exist and we need to make some changes in our with.

NORMA STANLEY: The police policing and things like that, but it was always there, but until people started saying, people who are you know, not necessarily us started saying.

NORMA STANLEY: yeah this is real and we have to address it i'm nobody was really listening and so yeah you probably.

NORMA STANLEY: right, you probably need some people who are not actually who don't necessarily have a connection to the Community, but want to help make some things those of us who are making the most noise have a connection to the community already.

Oba Chikelu- Dedric: Yes, it has to be people who are afluent away from the community that has a heart for the struggle to make more of an influence, because if the athletes.

Oba Chikelu- Dedric: boycotted or were very vocal or had some type of unified commemoration to give attention to the special needs in the Olympics.

Oba Chikelu- Dedric: Then it would be more powerful powerful and it will be heard, but if you're dealing with the the powers that be they're going to see how can we make more money if we can't make money from it, if you cannot.

NORMA STANLEY: It all comes down to economics.

Oba Chikelu- Dedric: comes down to economics, you know who wants to see little Johnny run across the field or miss Sarah with no legs do gymnastics you know and look at it, with the right mindset, not as a spectacle, but as competition on a special level.

NORMA STANLEY: level that.

NORMA STANLEY: Most people would never be able to do and so many again athletes who are just accomplishing such amazing things but.

NORMA STANLEY: When you have situations like you know Simone biles being ridiculed because she had to take a mental health break as fantastic, as she is the typical athlete it's a growth it's a it's an education and growth process that we just have to keep moving towards and.

NORMA STANLEY: And it's just the way it is.

Oba Chikelu- Dedric: That, I want to bring out the fact that.

Oba Chikelu- Dedric: Me being a veteran.

Oba Chikelu- Dedric: When people see me walk into a room know that i'm a veteran and not knowing what happened to me it seems to be more uplift and respect.

Oba Chikelu- Dedric: in thinking that that was something that was acquired in the military service.

Oba Chikelu- Dedric: So if you're disabled by military service, it seems to be a whole different world view and value as it relates to a person that civilian with a disability, the value in your stock goes down.

Oba Chikelu- Dedric: So when they find out it wasn't a military service related situation they go, oh okay.

Oba Chikelu- Dedric: You know.

NORMA STANLEY: And it should not be either one.

Oba Chikelu- Dedric: yeah but that's the way people process this yeah yeah.

Oba Chikelu- Dedric: like, if I were my veteran hat and go anywhere and they see me with that Walker they are just they want to salute me.

Oba Chikelu- Dedric: I get that open the doors for me, I get smiles it's like every day is Memorial Day and fourth of July, you know what i'm saying you know veterans day.

Oba Chikelu- Dedric: But when I take that hat off and become a civilian i'm just that the guy with the Walker and let's let's help him out because they don't open the doors for me, because they care for me, they want to make sure I get out of the building without falling for lawsuit.

NORMA STANLEY:  wow.

Oba Chikelu- Dedric: You can feel the spirit of the treatment of the people, oh, let me help you why do you want to help me, are you helping me because you want to make sure your policies and procedures are right, if I fall.

Oba Chikelu- Dedric: Or do you really care about me, you know these are things that psychologically, we have to deal with, and you have to be strong.

Oba Chikelu- Dedric: Because people treat you many different ways, when you leave the four walls of your home you go into this world that has so many perspectives you're going to be met by many of them within the course of eight hour day.

NORMA STANLEY: Absolutely and and that's where faith and a spiritual foundation like I said it's always something that I fall back on.

NORMA STANLEY: And so you know, at the end of the show but i'm happy to share some people some you know where they can reach you how to keep in touch with you at salt and life truth Center and need some more information.

Oba Chikelu- Dedric: salt and life truth center's in decatur Georgia, the address is 2622 snapfinger road decatur Georgia 30034.

Oba Chikelu- Dedric: We have a website is the.

NORMA STANLEY: www.sltcempowermentzone.com

Oba Chikelu- Dedric: That way you can find out more about us and learn more about us, but please come we have services in the building twice a month, the first Sunday is at 9am the third Sunday is at 10am and we also have a Teleservice that we have on these on the second and fourth Sunday.

NORMA STANLEY: that's right, so you guys it's an awesome awesome ministry and i'm thankful to be a part of it, and I just wanted to have Bishop avery share.

NORMA STANLEY: Some of His story, because I think it's something that people need to understand because there but for the grace of God, for all of us all of this and all it takes we're all just one incident away.

NORMA STANLEY: from being a part a member of the disability community and that's just a reality, so thank you for taking time out of your busy schedule to be on disabled lives matter and we'll be talking with you again soon.

Oba Chikelu- Dedric: Thank you so much, I appreciate the opportunity for being on here today.

NORMA STANLEY:  Thank you.

Oba Chikelu- Dedric:  See you later.

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-Ep26_Francine_Falk-Allen

S1-Ep26_Francine_Falk-Allen

August 26, 2021

Disabled Lives Matter
Season 1, Episode 26
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Francine Falk-Allen

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!

NORMA STANLEY: Hello everybody and i'm norma Stanley co host of disabled lives matter and our co host nadine vogel.

NORMA STANLEY: can't be here today, but I am going to be interviewing miss Francine folk Alan Allen who is an author and she has written a few books she's also a disability activist and.

NORMA STANLEY: advocate and has written a few books and I will be talking about those on the show today at three years old, she was.

NORMA STANLEY: You know contacted a polio, and the temporary lost the ability to stand and walk she's gonna share a little bit about the challenges, she shared or has experienced.

NORMA STANLEY: growing up with someone who, you know as someone who had polio and disability and actually you know overcame some of those challenges.

NORMA STANLEY: And I had a couple questions I wanted to ask you some examples in Francine and welcome to disabled lives matter which is basically more than just the show more than just a podcast we are working on it becoming a movement.

NORMA STANLEY: So. tell us a little bit about your story.

Francine Falk-Allen: Thank you, thank you norma um well I had polio, when I was three in Los Angeles, and I was hospitalized for six months at three years old, which kind of put an end to my toddler phase of life.

Francine Falk-Allen: And they told my parents, I would never walk again but.

Francine Falk-Allen: Some of the physical therapist felt that I had the potential to learn to walk so they did get me up on little crutches which I used for about three years and and wore braces and the whole thing and.

Francine Falk-Allen: Finally, was able to let go of those for a number of years and then, of course, when I got into my 20s I found that having a short.

Francine Falk-Allen: Mostly paralyzed leg was difficult, and I mean it had always been but I realized that it would be helpful to use a cane, so I started using a cane.

Francine Falk-Allen: And now that i'm in my 70s, I frequently use lofstrand crutches arm cuff crutches if I have to walk any distance so it's been a.

Francine Falk-Allen: You know, a journey of adapting and I think that that's that's true for for anyone who has a disability and also their family members it's it's a process of adapting over time.

NORMA STANLEY: Absolutely, and I can imagine as a child growing up that must have been challenged, because today we have so many instances where children with disabilities are you know bullied I was wondering if that is something that you dealt with you know, growing up.

Francine Falk-Allen: Oh yes.

Francine Falk-Allen: Yes, I was.

Francine Falk-Allen: I had there was a there was a boy in kindergarten who used to hold me up against the wall, with his big fat stomach and it was very frightening.

Francine Falk-Allen: And if there wasn't a teacher nearby he knew that he had a lot of power over me and he started calling me hop along Cassidy.

Francine Falk-Allen: That was the cowboy in the 50s that was on TV because I limped so badly and then the other kids started calling me hop along Cassidy.

Francine Falk-Allen: And they used to grab my things and run away with them, because they knew it couldn't run after them and but not everyone was like that it was there were a few kids that were mean that way and.

Francine Falk-Allen: There was the same boy actually hit me in the in the solar plexus and knocked the wind out of me at one point and.

Francine Falk-Allen: And the principal was called in on that one and he was punished because there was still corporal punishment in those days, and he never bothered me again but yeah there were incidences like that quite a bit yeah.

NORMA STANLEY: wow so How did the challenges, you had growing up like what are the things you shared in one of your books is.

NORMA STANLEY: you had some issues with driving but you were able to drive, you said you just came back with you that was that was fascinating.

NORMA STANLEY: because you know of your leg, you had a special way of driving.

Francine Falk-Allen: Yes, um I couldn't use my right leg to drive because I don't have any ankle motion and I tried using my right leg and was quite dangerous, because I was pushing from the hip I didn't really have that much control over the accelerator, so I learned to drive with my left foot.

Francine Falk-Allen: which meant that I had to.

Francine Falk-Allen: Sit kind of sideways and I would use my left foot for both the accelerator, and the brake and then, when I was in my early 40s and it's amazing to me that it took this long to get to this.

Francine Falk-Allen: But I was driving a lot, because my boyfriend who became my fiance and I eventually married him lived to 60 miles away, and it was really hard on my back at that point.

Francine Falk-Allen: So I learned that you could get a left foot accelerator, and I had one installed in my car at the time, and I have one in my current car car and oh jeez it made such a difference.

Francine Falk-Allen: It allowed me to drive without pain So yes.

NORMA STANLEY: that's interesting because I truly didn't know there was left foot accelerators so that's definitely is news, to me, I mean it makes sense because other people who have had these kind of challenges need those types of things so that's good to know.

NORMA STANLEY: um, so tell us about your book I love the title i'm no spring chicken.

NORMA STANLEY: Stories and advice from a wild handicapper in who is aging in the disabilities and again.

Francine Falk-Allen: Stars and advice from a wild handicapper on aging and disability.

Francine Falk-Allen: yeah so I felt that I had a lot to share with regard to adapting to aging.

Francine Falk-Allen: And aging with the disability so most people as they age end up having some kind of physical challenge, whether it's.

Francine Falk-Allen: You know very sore hip or bad back or needs that need replacing or whatever, and also things like.

Francine Falk-Allen: Becoming overweight that often is part of it, especially if you have difficulty walking so I felt like I had a lot of suggestions about ways to deal with it and also.

Francine Falk-Allen: Also ways for family members to adapt to the changes in people's bodies, because there is a lot of women taking care of their parents now.

Francine Falk-Allen: it's it's it's not it's very challenging to be raising kids and taking care of your parents as well.

NORMA STANLEY: Absolutely, and as I am the primary caregiver my adult daughter, who has intellectual and physical disabilities, and so you know, as I age and i'm in my early 60s that also is.

NORMA STANLEY: especially challenging, so I would love to hear what you share in your book about a whole thing about aging the some of the things that you care about in your book specifically that you could share with us.

Francine Falk-Allen: Oh gosh let's see um well, one of the things that I share, which is kind of amusing is that when people are in a wheelchair it's it's condescending to pat them on the head.

Francine Falk-Allen: And it's it's kind of natural for people to be affectionate in that way with someone that they care for but it's like it's like treating someone like a puppy so that's.

Francine Falk-Allen: that's The kind of thing that.

Francine Falk-Allen: I suggest that you don't do that my sister was in a wheelchair when she was much older and.

Francine Falk-Allen: Her husband used to pat on the head and she just hated it and i've had that happen to i've had it happen in airports, when I needed to use a wheelchair so that's something that is a very simple thing but.

Francine Falk-Allen: Another thing is to sit down at people's eye level, because if you can't stand at parties or other gatherings and have.

Francine Falk-Allen: Direct eye contact with people it's really great if they sit down next to you or if you can find a stool at a party, so that you sit up at the same height, you know that sort of thing and.

Francine Falk-Allen: I mean those are just simple physical things, but I also suggest that.

Francine Falk-Allen: For instance, it's it's really kind it brings people down to say gosh I don't know how you deal with this, I just I would feel terrible if this had happened to me.

Francine Falk-Allen: I'm mean that is not encouraging it's more encouraging to say.

Francine Falk-Allen: You know how are you doing, and you can ask people How did this happen to you, it must have been hard you want to tell me about it, because a lot of times it's it's really helpful for a person to have an opportunity to explain what happened and you deal with it.

NORMA STANLEY: You know just basic disability etiquette which a lot of people don't have.

NORMA STANLEY: yeah they haven't been exposed or been around.

NORMA STANLEY: The Community or an individual with a disability, you don't know what to do and don't know what to say, and many people are afraid they are going to say and do the wrong thing and sometimes they do.

NORMA STANLEY: I was in a store, I think I was in Virginia attending a friend a family members home coming service and I went to the store with my daughter who's in a wheelchair user and the person who is the cashier said Oh, what happened to your daughter um let's not sure what's wrong with your daughter.

Francine Falk-Allen: Oh

NORMA STANLEY: There is nothing wrong with her at all, she was born with cerebral palsy and as a result, she cannot walk but you know she could do a lot of things she cannot walk and she cannot talk, but that was part of her birth process and to she's a very happy child.

NORMA STANLEY: a young woman rather because my daughter is no longer child, but I called her a child because she's my child.

Francine Falk-Allen: yeah right.

NORMA STANLEY: yeah you do have to you have to educate people on what they do and say that makes the person who.

NORMA STANLEY: Is i'm disabled feel comfortable and and not be afraid to talk, but you don't want to invade their personal space either you know, by patting somebody on the head you don't know almost like you know, being an African American and somebody white comes up, and you know touches the braids.

NORMA STANLEY: You know if you don't do things like that. You know.

NORMA STANLEY: So it's a learning process and it's and you have to be willing to learn.

NORMA STANLEY: And you have to be willing to be open to learning new things about this Community, and this population and that's part of what we tried to do here on the disabled lives matter podcast.

NORMA STANLEY: Is share information that can you know again that people know how vital and how vocal this Community really is, and really you know they're not putting up with a lot of nonsense that we probably took a lot of back in the day.

Francine Falk-Allen: Yes, yes i'm while you're speaking I thought of a couple of other things that have happened to me i've had especially doctors, but also friends.

Francine Falk-Allen: refer to my polio leg is my bad leg.

Francine Falk-Allen: To call it that, too, when I was younger my bad leg and I realized that it's not you know it's worked really hard to accommodate me and try to keep up and it's a really good leg, so I call it my weaker leg.

Francine Falk-Allen: And it's much more accurate and uh oh i'm sorry it slipped my mind I had another thought that maybe it'll come up later sorry.

NORMA STANLEY: Well that's Okay, so you know is your book kind of humorous the title sounds like it would be a little bit funny you know no spring chicken I guess i'm aging too so it's.

NORMA STANLEY: I find the title kind of funny but you know, the point is that you have to look at our lives with a little bit of humor.

NORMA STANLEY: You know to be able to get through some of the challenges that we deal with on a daily basis that's just me, it should be, I mean.

NORMA STANLEY: Every day, is not a day of you know gloom and doom there's some amazing moments that take place in our lives as people with disabilities invisible or visible.

NORMA STANLEY: And, not to say i'm a caregiver, and so there are days, where you know with yeah I sit and cry sometimes, but there are days when I am as happy as a you know a clam because.

NORMA STANLEY: she's been a blessing to me and i've learned so much about the population and the Community and and have found that it is something that I can help through my journalism background.

NORMA STANLEY: make a difference, by just sharing stories like yours so um tell us about a little bit about your book and we felt compelled to write it.

Francine Falk-Allen: I I had I had written my first book about my my experience of polio growing up as a handicapped child and Oh, I want to say that I do use the word handicap.

Francine Falk-Allen: Somewhat briefly.

Francine Falk-Allen: I did not understand until maybe three or four years ago that the disabled Community preferred person with a disability, and I understand that and I respect it, but I have always felt like.

Francine Falk-Allen: handicap was not a bad term and that it it describes someone who needs a little bit of assistance and is able, but needs some assistance so i'm you know I use that term but.

Francine Falk-Allen: I had written my book about my my experience of being a disabled child in and and, eventually, of course, the disabled woman and the challenges that I face in and not a poster child and.

Francine Falk-Allen: I did have a lot of things that I wanted to say which my editor felt were more like self help, so I saved some material and then I magnified it and I especially talked a lot about disability travel in no spring chicken.

NORMA STANLEY:  Great.

Francine Falk-Allen: Becuase I think a lot of people tend to think that you can't travel anymore, once you have a disability, you just have to adapt and there, there you have to do more, planning more advanced planning, make sure that.

Francine Falk-Allen: The place that you're going to stay has an elevator not so great to stay in bed and breakfast because they almost always have stairs unless they have a downstairs bedroom and the things like that and and planning to get a wheelchair at the airport, if you need one and.

Francine Falk-Allen: Adapting to have there's another section about adapting to assistive devices, a lot of times older people don't want to start using assistive devices like canes crutches walkers and wheelchairs and they can.

Francine Falk-Allen: scooters especially they can really assist you to have a better life, so I talked about that you know don't want to use them too soon, because you do want to keep.

Francine Falk-Allen: Exercising the muscles and using them to stand up, but when it gets to the point where you're staying home all the time it's time to look at how you could use some devices in order to get out into the world, even if it's just going to the park.

Francine Falk-Allen: Because it isn't healthy to stay home all the time.

NORMA STANLEY: Absolutely, and I take a quick break and and for commercials, but I do want to come back and talk a little bit more about the travel aspect because accessibility is important, and some of these.

NORMA STANLEY: Some of the hotels have gotten better in terms of you know cruise lines and things that are still some needs, I think that that needs to be addressed and i'd like to be able to talk to you a little bit about that.

NORMA STANLEY: Because that's something that I typically like to travel with my daughter, who is a wheelchair user, so we are going to take a quick break and come back to disabled lives matter and speaking with Francine Falk Allen.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

 

NORMA STANLEY: And we're back speaking with miss Francine Falk Allen and i'm normally Stanley and our co host nadine vogel couldn't make it today, but we are having a wonderful conversation.

NORMA STANLEY: About Francine's work as an author and as an advocate for the disability community and she was just talking a little bit about our.

NORMA STANLEY: A travel at people with disabilities and traveling and I would that's something that's near and dear to my heart.

NORMA STANLEY: I love to travel and I love to take my daughter, who is a wheelchair user with me and I know i'm one time we took cruise and we're getting off at the Bahamas and.

NORMA STANLEY: The way they had to get off of that ramp was kind of scary because I mean you know it has some one in the front and back and i'm walking backwards on a this really high thing.

NORMA STANLEY: And I said Oh, my goodness that was that was a little scary and then other times when they could not let her get on to we were going to an island, and the water was very choppy and.

NORMA STANLEY: They basically said I don't think it's a good idea for her to come off, and I said that's okay you don't have to tell me twice that's Okay, it looks like to me I'll just stay on the boat on the ship but there's so much when we travel like I was just in Las Vegas in May, and they were just opening up and I had my daughter with me and.

NORMA STANLEY: I love to walk and i'm always pushing Sierra in her chair and there was, you know that I don't know if you've been to Las Vegas.

NORMA STANLEY: You get to a certain point where you have to take you know either an elevator the steps, or you know.

NORMA STANLEY: elevator or the steps or an escalator.

NORMA STANLEY: but the elevator wasn't working to get to the other side.

Francine Falk-Allen:  Oh.
NORMA STANLEY: So i'm had to turn around and go the other way and I was kind of disappointed, because you know something I won't see on the other side and there was no way to get up there, or over there and I said I thought you guys.

NORMA STANLEY: were supposed to be open.

NORMA STANLEY: You know how to do not have the elevated open there's a lot of seniors.

NORMA STANLEY: that travel to Las Vegas.

Francine Falk-Allen: Yes.

NORMA STANLEY: in wheelchairs and and scooters and anything else and  you know and i'm sure they're headed to the same situation.

NORMA STANLEY: And so those kind of things cities, need to be paying attention to the accessibility in every way, shape or form and not enough people paying attention, I think, to the needs of people with disabilities who, like to travel and not just travel, but.

NORMA STANLEY: You know in grocery stores and things like that there's so many issues and there is so much I could talk about but go ahead.

NORMA STANLEY: share what your perspective is on that.

Francine Falk-Allen: I, I find that the most important thing to do when you're planning a trip, if you have a disability is to call ahead and find out what's going on.

Francine Falk-Allen: Because one of the biggest questions for me is is there an elevator and.

Francine Falk-Allen: You know if we're going to be upstairs and I also have usually call several times and make sure that I get a room that's not too far down the hall, because I can walk.

Francine Falk-Allen: But I can't walk long distances very easily, I have to use my crutches so if if we're somewhere near the elevator then i'm able to go down to a lobby if that's where the breakfast is and I don't necessarily have to take my scooter.

Francine Falk-Allen: But yes, I mean uh it's unrealistic to plan a trip to a place where there are lots of hills, for instance, especially if someone's going to be pushing wheelchair but.

Francine Falk-Allen: Even as a person who uses crutches i'm certainly not going to go to positano Italy or to Portugal, where there are tons and tons of stairs.

Francine Falk-Allen: And that's just an unrealistic thing, but there are cities like Las Vegas is pretty flat so that tends to be a good place if you have a scooter or you know some way to get from one place to another, but I think that.

Francine Falk-Allen: Knowing the terrain, of the place that you're going to go is is really a big deal I have questions that I always ask you know, one of one of them is is there an elevator I also.

Francine Falk-Allen: Usually will always try to make sure that there is a restaurant on site or right next door, so that I don't have to go three blocks to get breakfast because, for some people, that would be a nice walk, but for me it's a problem.

Francine Falk-Allen: So you have to find out about those things, and I find that cities tend to be an easy place to go, because you can get.

Francine Falk-Allen: An uber or lyft or a taxi to get from one place to another fairly easily it's not so easy getting on and off buses, but that also.

Francine Falk-Allen: begs the question of how much money you have so it's better to take fewer trips save up some money and take fewer trips that you're prepared for financially then to take a lot of.

Francine Falk-Allen: A lot of TRIPS where you have not been accommodated where you know you have to end up walking too far and that sort of thing.

NORMA STANLEY: And that's one of the things I really want to go to Italy.

NORMA STANLEY: And I wouldn't want to take my daughter, I want to go, you know, and those are such the Old Cities and they can't accommodate her wheelchair, you know a lot of those places have a lot of these every narrow streets and.

NORMA STANLEY: cobblestone streets and lot of steps to see things, and so I had to do some research before I take a trip the trip but i'm sure there's some ways to do it, we can do, I just haven't had a chance to do the research that is definitely in the plans are.

Francine Falk-Allen: A lot of European cities, although they have cobblestones they do have sidewalks that are pretty smooth and I think that that evolved, because women wear high heels and.

Francine Falk-Allen: those cobblestones are hard to walk on with high heels although in a lot of places you go you see that they're wearing thicker heels, and you know, like anyway, you know thick soled shoes rather.

Francine Falk-Allen: than spike heels, and that sort of thing but um, but I think also it's helpful to have a scooter or a power chair, because.

NORMA STANLEY: A lot of times they can go.

Francine Falk-Allen: Over something bumpier than then it a hand push wheelchair, so that all those things to consider you can often rent a scooter at some of these places, if the person is able to use one.

NORMA STANLEY: That's a child where my daughter is.

NORMA STANLEY: not intellectually capable of doing those things.

Francine Falk-Allen: yes I understand.

NORMA STANLEY: So that's my challenge, but you know we're going to work around that i'm going to Italy. But tell us.

NORMA STANLEY: A little bit about you know.

NORMA STANLEY: Through this process for the child to and adult and dealing with going through now I mean just as you as an advocate and as just one somebody wants to share information.

NORMA STANLEY: Are you comfortable with the changes that are being made because of accessibility in terms of the ADA and in terms of things that you've seen in the course of your your life as a person who grew up with a disability and and would you like to see change that has not happened yet.

Francine Falk-Allen: I really appreciate the Ada.

Francine Falk-Allen: And it has been great to have ramps, even though i'm not in a wheelchair now I use the scooter and I often use those ramps but even as a person who needed to use a cane or crutches.

Francine Falk-Allen: ramps were really great because stairs have always been difficult for me with one leg that's pretty much paralyzed it's difficult to climb stairs.

Francine Falk-Allen: I used to be able to do the more easily now they're you know really more challenging even a high curve is challenging for me, so I really appreciate the ramps the thing I don't appreciate is the little bumps on the ramps, because I.

Francine Falk-Allen: trip over them and and most people who have disabilities are actually not in wheelchairs and so they are a trip hazard and I feel like that wasn't thought out very well one thing's thing that we've been addressing i'm on the.

Francine Falk-Allen: Accessibility Community for the city of San Raphael actually i'm an alternate member, but I always go to the meetings and we've been talking about how contractors tend to think of some is good more is better.

Francine Falk-Allen: So it's great that the bumps keep wheelchairs from going out into the street, especially if you're a blind person in a wheelchair.

Francine Falk-Allen: But um contractors often put them over huge expanses of driveway when they aren't necessary in the aren't required, but they think well i'll just do the whole thing, because then.

Francine Falk-Allen: i'll be sure and cover it and I don't know for sure what all the requirements are so i'll just put in more than what it calls for so we've been.

Francine Falk-Allen: Looking at a program to educate contractors another thing that we noticed is that when when they put a disability restroom in to.

Francine Falk-Allen: A facility a building or whatever, a lot of times they put the coat hanger up too high to reach it when you're in a wheelchair so that was another thing that we felt that they needed to be educated about that it's crazy to have.

Francine Falk-Allen: A wheelchair wheelchair accessible stall, and then the person can't reach the place to put their coat or their purse or whatever.

NORMA STANLEY: And they also be to when they do at the airports need to put an in restrooms if at all possible, which I don't know but definitely at the airports places where you know, those of us who have children who may not be baby.

NORMA STANLEY: children with disabilities, so that we don't have to put them on the floor and change them.

Francine Falk-Allen: Oh yes.

NORMA STANLEY: That's a situation that people tend not to think about you have to change this child, not a baby in your arms if she's a child or he's a child they need to be changed.

NORMA STANLEY:  because they can't use the restroom by themselves.

Francine Falk-Allen: Yes.

NORMA STANLEY: and you have to put them on the floor.

Francine Falk-Allen: yeah oh that's terrible.

NORMA STANLEY: that's, what are the things that we face that people tend not to talk about but it's a situation.

Francine Falk-Allen: Sure

NORMA STANLEY: And so, I have some colleagues who are advocating for some changes at the airports, and you know these restroom airports, you know i'm assuming at airports, but hopefully we can see restrooms in a lot of places, but these airports, because when you get off a plane generally, you have to go.

Francine Falk-Allen: Actually, and i've seen changing tables inside a large disability stall from time to time but it's rare and I didn't actually realize that that was a problem that's something I wouldn't have thought of either.

NORMA STANLEY: yeah yeah so I mean what would you like to share with our listening audience about your book about the things that you have coming up just to know and how people can reach you if they have any information and any questions about learning more, about you and the work that you do.

Francine Falk-Allen: Well um I do have a section in the book that lists ten, ten tips for leading a healthy life and they're really obvious things like don't smoke cigarettes and eat a healthy diet and get a little exercise if you can be sure to.

Francine Falk-Allen: keep a social network and relax there are a lot of things like that, but it's all in one place that's the thing I like about it it's all in one place and it's just reminders and.

Francine Falk-Allen: Another thing that I talked about in the book is that it's really important to ask people what they need and.

Francine Falk-Allen: offer if you can, if you have time to offer your assistance to people that need help in your life but it's also important to keep your own life in balance and not over commit yourself, you know.

NORMA STANLEY:  Absolutely.

Francine Falk-Allen: Particularly aging parents that's mostly moms because women tend to live longer, they need to know when you're coming and.

Francine Falk-Allen: it's good to have like a calendar on the wall, or something so that they know you're going to be there, Wednesday night at 630.

Francine Falk-Allen: And they don't have to worry about it because they're not necessarily going to remember, if you say well i'm coming back in a couple of days, you know that sort of thing.

Francine Falk-Allen: And it's really important to ask what the person needs, I know that that occasionally when i've been trying to get through a door with my crutches and my computer case i've had someone say you should have asked for help.

Francine Falk-Allen: And that's that's really not helpful if you just want to open the door and say here i'll get this for you, then it doesn't blame the person.

Francine Falk-Allen: We have to ask for help a lot, so we tend to save up our asks for things that we really need a lot because it's hard to keep asking and asking and asking so offering help is is really helpful but but.

Francine Falk-Allen: You know, not to the point where you detriment, you know the point of detriment, for your own life, you have to take care of yourself too.

NORMA STANLEY: I absolutely agree and as a mother of an adult daughter, like you say, we don't like asking we just do you have to do.

NORMA STANLEY: And you know, hopefully somebody will offer, but we don't sit there and wait, I was like we do we have to do and just keep it moving, but so How can people reach you and get more information about your books and products and things like that they can maybe go.

Francine Falk-Allen: Well there's two places to reach me one is at my website, which is Francine Falk dash Allen dot com and that's F-r-a-n-c-i-n-e.

Francine Falk-Allen: F-a-l-k dash A-l-l-e-n dot com and the other is on Facebook Francine Falk Allen author i'm there I'm in both places.

NORMA STANLEY: awesome awesome well Thank you so much we're at the end of the show, and I thank you so much for being a part of disabled lives matter today and you know, on behalf of nadine vogel my co host.

NORMA STANLEY: You know, she would have loved to have met you i'm sorry she's not she said she couldn't be here, but thank you for being a part of our show today and we look forward to having you back.

Francine Falk-Allen: Thank you norma it's been really fun talking to you it's great to meet you.

NORMA STANLEY: You too, you too, but we're talking again soon.

Francine Falk-Allen: Okay.

NORMA STANLEY: Have a blessed day.

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-Ep25_Gary_Norman

S1-Ep25_Gary_Norman

August 19, 2021

Disabled Lives Matter
Season 1, Episode 25
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Gary Norman

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 everyone, this is nadine vogel your co host of the podcast disabled lives matter I joined by my fabulous co host norma stanley.

NORMA STANLEY: Greetings everybody, how you doing.

Nadine Vogel: Good so norma This is just going to be another interview to show why disabled lives matter and it is about a movement, not just a podcast.

NORMA STANLEY: Absolutely awesome movement.

Nadine Vogel: yeah so today we're really excited we are joined by Gary Norman who's an attorney he is someone with a disability and I just you know I just found his journey.

Nadine Vogel: and his experience is really, really interesting and really illustrates why we say disabled lives matters so welcome welcome welcome Mr Norman.

Gary Norman: Thank you so much, this is my pleasure to be with you, I hope, certainly my life has mattered I think it's important.

Gary Norman: In the history of men and women that we make an impact before we leave this great plane and, hopefully, some of my journey will show that i've done that, and hopefully maybe share some wisdom too.

Nadine Vogel: Well, that would be great so Gary tell us about your personal journey with disability let's start there.

Gary Norman: So it has been a long one i'm a person who was visually impaired and now I will place myself in the blindness camp, I have a rare genetic eye disorder called retinitis pigmentosa.

Gary Norman: Sometimes it impacts people much older in life, but, for me, for better or for worse, I was diagnosed with rp when I was 10 years old.
-

Gary Norman: In a similar fashion, my brother was diagnosed because he's nine years older than me as he was a teenager at about 19 so i've lived with visual impairment blindness, for some time now.

Gary Norman: And all the things that are good and perhaps negative about that journey.

Gary Norman: And then certainly More specifically, I started off for losing my night vision and about the fifth grade I lost my peripheral vision and about the seventh grade.

Gary Norman: And then I would say that I kind of pretend pretend that I could see print, but I really lost my ability to read standard print about the ninth grade and so everything in between it's been quite an adventure.

Nadine Vogel: Well, it sounds like it um and you know why it's it's amazing to me how individuals like yourself with disabilities.

Nadine Vogel: You know, can take such a positive and proactive view on life and business and yet others who don't have disabilities don't get it right, they just don't understand it, for some reason.

Nadine Vogel: My understanding is that you also have credentials in journalism and publishing.

Gary Norman: yeah no yeah for sure we're we're trying to be diverse in our career path, I think.

Gary Norman: Some people disagree with me some people I think perhaps say that as a disabled professional you need to specialize and I think that's a legitimate point of view, but from my own personal point of view.

Gary Norman: I really think it's important, at least in my sense of the great history of lawyers that we kind of have a lot of diversity and a lot of.

Gary Norman: irons in the fire so journalism is one thing that i've really been kind of working on lately, I have a column in our legal newspaper in Maryland and then i'm also a newly minted.

Gary Norman: feature contributing author at government loop, which is kind of a online leadership platform for young leaders and public service.

Nadine Vogel: that's great, and I think my understanding is that with your column in the Maryland daily record you focus on policy and how to influence policy as a lawyer, with a guide dog Is that correct.

Gary Norman: That is correct, so I think this journey with guide dogs, which has been since 2001 when I first obtained my first dog Langer.

Gary Norman: has been this really rich one that's not only taught me a lot, but I think gives me a lot to share with the public.

Gary Norman: So both my my formal writing or more legalistic writing even in kind of a newspaper context.

Gary Norman: or even my new kind of like leadership writing with government loop really focuses on this idea of my journey with a disability, as a dog handler and I think that's just so more unique than using a cane.

Gary Norman: In some ways and depending on the context really either talking about public policy us with the maryland daily record and and how i'm influencing that, as a lawyer, with a disability.

Gary Norman: Or the context of government loop trying to share sort of my wisdom as an employee or leader, with a disability, and what that means, to have an active or meaningful career in spite of perhaps barriers or accommodations issues.

Nadine Vogel: yeah no absolutely and and I also understand that you're the first Chair with a guide dog at the board of Commissioners So could you tell us a little bit about that experience.

Gary Norman: Sure, so that's been a rich, perhaps even complicated one but it's been one that i've been honored to hold.

Gary Norman: I was appointed under two different governors as a person who promotes nonpartisan service.

Gary Norman: I was first appointed by governor o'malley in Maryland and then more recently reappointed by governor hogan to a new year six year term retroactive to 2017.

Gary Norman: And then, and our board under the statute, we have a specifically designated chair and then as a custom we've created a vice chair, so I served as an associate Commissioner from about 2005 or six until about.

Gary Norman: 2016 and then I was Vice chair from 2016 to 18 and then the board elected me in 2018.

Gary Norman: And since we've really been trying to rebuild the board under my chair in partnership with my really talented Commissioners.

Gary Norman: It will be a limited term I I know there's something about making ourselves obsolete, but I do so, happily, because I believe there's an importance in the change of power.

Gary Norman: And my term will end because of that this December, basically, and then in terms of the disability piece of that I think it's been this.

Gary Norman: This balance between sharing my experience and even trying to educate our staff about disability, because I think frankly they've never seen a chair, with a guide dog.

Gary Norman: In recent history but also really being a fair arbiter and servant of all the people have of just a whole range of different kinds of issues that we cover and try to protect against in terms of antidiscrimination so everything from L-G-B-T-Q, plus too.

Gary Norman: Basic kind of like what we call commercial discrimination or sort of like issues around contractors and then really trying to be a visible chair, with a guide dog, which of course means very interesting.

Gary Norman: benefits and challenges of navigating spaces or meeting with people or just them, and having a reaction to me as a blind person and.

Gary Norman: For for it stress or its workload it's been really an honor and a good learning leadership experience for me.

Nadine Vogel: Well, you know it's interesting norma didn't you have like a dog like show up at your House, one day, I think I remember this recently.

NORMA STANLEY: yeah

Nadine Vogel: with Sierra.

Nadine Vogel: was just loving life.

NORMA STANLEY: yeah we have a doberman pinscher puppy to follow me home, one day, a couple weeks ago and i'm hoping we can train her to be a therapy companion.

NORMA STANLEY: But the canine PhD didn't think it would be a good fit so i'm not gonna be able to keep her unfortunately and I i'm kind of sad about this and sierra's gonna be sad about that, it's a beautiful dog.

Nadine Vogel: Any dogs dogs are amazing right.

NORMA STANLEY: oh yeah.

Nadine Vogel: My.daughter my oldest daughter has a service dog for her disabilities, and you know, one of the things i'd love to ask you about.

Gary Norman: Yeah sure

Nadine Vogel: You know, we talk about how we work with our service dogs or guide dogs, but I feel like the dogs have impact on us beyond just what they do right beyond just the tools of daily living that they help with I would love to hear your perspective on that.

Gary Norman: Maybe not everybody thinks this way, but I think the outside world is sentient active world and dogs as part of that are included so.

Gary Norman: While each of my dogs are certainly had the guide dog role, which is.

Gary Norman: One that we can talk about they've been so much more to me each dog has been a chapter of my life and they've influenced each chapter of my life.

Gary Norman: in ways that are beyond just helping to get from here to there so.

Gary Norman: Personally professionally emotionally spiritually and everything that i've learned as i've grown has been because of my partnership with each of these dogs, not only on a.

Gary Norman: level of again getting me from here to an escalator but in terms of.

Gary Norman: learning how to, I think, to be a better human, to be a better leader and also to be perhaps hopefully a better person connected with the outside world and.

Gary Norman: I hope that maybe in these kind of inclusion revolutions we're living through, maybe we're starting to realize that.

Gary Norman: Much more of us are starting to realize that truth that that these dogs these these sentient beings really have such an impactful role on us as humans and.

Gary Norman: Therefore, perhaps, while maybe i'm not necessarily promoting veganism which was certainly something I worked on with the animal law section, but maybe we could all just have a better sensitivity to our outside world and our animal friends 

Nadine Vogel: yeah. Absolutely, and I, and I believe you've had you on your third guide dog where you had Mr langer Mr Pilot and currently Mr Bowie.

Gary Norman: Oh that's right yeah langer worked 2001 to 2010 many service animal handlers may not be able to keep their dogs in retirement, but i've been very blessed to keep each one in retirement.

Gary Norman: So as soon as I retired langer I went to school for pilot and California and unfortunately pilot didn't have as long of a career as langer he worked from 2010 to 2017 and unfortunately brother pilot went to the celestial lodge of he fought cancer and soon as he retired.

Gary Norman: We lost him in 2019.

Gary Norman: And then i've been working Bowie since December 2017 i'm at a new school new york's in the New York City area.

NORMA STANLEY: Whats the average time to have a dog, I mean what is the average time to have one. You've had your dogs for quite a long time what's the average amount of time that it tend to be able to stay with. the human.

Gary Norman: um.

Gary Norman: yeah sure so in terms of a guide dog, we like to shoot for seven eight or nine years nine years, perhaps, is a long kind of timeframe.

Gary Norman: With langer he was solid at he was one of my best guidedog workers, of the three he was solid for eight and then I push them a little bit for the ninth because I was in post Grad school and then.

Gary Norman: Pilot just developed unfortunately some anxiety issues and then he started with the cancer problems, so that really did shortness career a little bit.

Nadine Vogel: So how difficult, is it if it's difficult, you know transitioning you develop these amazing you know relationships with these dogs right dependencies many ways on each other and then you have to transition what's the impact of that.

Gary Norman: is really is so profound.

Gary Norman: I thought perhaps it would be easier over time and I think if you talk with different guide dog handlers each transition is unique and.

Gary Norman: Each transition is exciting and happy and really outstanding and yet each transition is often very emotionally taxing.

Gary Norman: and difficult because you're saying goodbye to a partner you've worked with so many different years and that very unique tight relationship.

Gary Norman: So it is a challenging transition it's a difficult one emotionally physically and even physically, I would say, because each dog guides a little different they each.

Gary Norman: kind of have the textbook skills, but how you work with them and how you communicate with them really in my experience varies across dogs what my langer needed.

Gary Norman: was different or would be different than what pilot needed and that has also been true with Bowie.

Gary Norman: What motivated pilot or got him to focus is different than how I work with Boeing now and and in learning that I think that's a huge lesson and leadership and in life in terms of dealing with other people .

Nadine Vogel: right right.  And I mean look it's no different than the rest of us right, we all have our own personalities.

Nadine Vogel: You know.

Nadine Vogel: We could have 10 law school graduates, you know they go to the same law school and practice, the same kind of law, but they practice differently.

Gary Norman: I think that's absolutely right.

Nadine Vogel: Though I I see it as that.

Nadine Vogel: So you know i'm just i'm curious and maybe we should you know take go to commercial break in a minute and come back, but one of the things that really like to talk about.

Nadine Vogel: And norma are you and I have had many conversations about this, but it's it's you know, disability, as it relates to this crazy pandemic we've all been going through a covid.

Nadine Vogel: And some of its unique issues, perhaps i'll say for individuals with disabilities.

Nadine Vogel: I suspect that you have some really great information on that and perspective, I know that you've worked a long time on health related disabilities.

Nadine Vogel: Disparities excuse me for people with disabilities and I think that i'd love to hear more about pre covid what your perspective was on that.

Nadine Vogel: And then during covid and post covid that if that if that makes sense, let's go to a short commercial break and when we come back let's attack that so I think there's a lot packed in there, so for our listeners stay tuned we will be right back with you.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

Nadine Vogel: Hello Hello everyone and welcome back to today's episode of disabled lives matter norma Stanley my co host and I are interviewing Gary Norman.

Nadine Vogel: And right before we went on commercial break we had asked Gary to start talking about the work that he has focused on for quite some time on health.

Nadine Vogel: related disparities relative to people with disabilities so Gary let's talk about that pre covid what the perspective in the practices and then we'll move into the covid ear.

Gary Norman: So I would say they're mixed in a way that pre covid or pre pandemic health disparities existed for people.

Gary Norman: with disabilities or by people with disabilities and.

Gary Norman: Whether it's because of covid or not, that continue to exist and covid only shed a spotlight on that that data and that issue.

Gary Norman: And maybe it come home to many people who are not perhaps have historically marginalized status so whether that's people of color people disabilities L-G-B-T-Q-plus individuals pre covid, however, specifically and, as now, I worked on health disparities in the.

Gary Norman: sense of being a manager.

Gary Norman: Can you think of federal attorney and healthcare and and also as a senior advisor to you.

Gary Norman: know at the Center on medicine.

Gary Norman: At the Center of medicine and law where I held.

Gary Norman: dialogues.

Gary Norman: and worked to try to bring attention to the issues, specifically.

Gary Norman: People disabilities.

Gary Norman: For a long time, perhaps in public health, there was a sense that disparity still exists, but often or sometimes people disabilities weren't included in that conversation.

Gary Norman: So I think as as we've grown and understanding about disparities, because because of covid we're finally starting to accept that A there are disparities, but people disabilities and B.

Gary Norman: Hopefully, as a society because of the inclusion revolution, we have to address healthcare disparities like we have to address every other umteenth issue that we're doing and grappling with.

Gary Norman: As a society, I think, in a positive way.

Gary Norman: Of course, there are always negatives to anything but largely.

Gary Norman: The inclusion revolution is really spotlighting that maybe we haven't always treated people of color well in our society, maybe we haven't always treating people with disabilities and.

Gary Norman: That that's not the I don't think we should blame anybody for that, but I think we.

Gary Norman: should say.

Gary Norman: This is our past.

Gary Norman: We need to accept our past.

Gary Norman: And we need to come together to address these issues, whether that's disparities in healthcare disparities and a good living for people or any other way that we can make ourselves really truly live our.

Gary Norman: American tenants.

Gary Norman: I have always fretted with being the civil rights chair I deal with what I feel is negative conversation, like the United States is bad.

Gary Norman: And what I say is that this country is incredibly.

Gary Norman: unique and wonderful, but as one of the greatest countries in human history we have even more responsibility to be the leader.

Gary Norman: And to address when we have failed, and we have failed in many ways as Americans in terms of disparities and inequities and now we have a chance that we have learned more that we can do better.

Gary Norman: And I think that's that's why it's been one form of honor to be a civil rights, Chairman and hopefully other God willing, more important more high level positions i'll have in the feature.

Nadine Vogel: So norma you and I have had conversations about these issues. Of implicit and explicit bias. 

Nadine Vogel: And you know it doesn't work, does it exist or not exist.

Nadine Vogel: And Gary you know my personal opinion is that you know, there is no such thing as unconscious bias right.

Gary Norman: You know it doesn't mean that people are.

Nadine Vogel: Trying to be mean it's just based on their experiences, but as it relates to health disparities, I do feel like bias kind of somehow feeds this I, what do you think.

Gary Norman: bias for sure or.

Gary Norman: Even bias in terms of people not not being open to educating themselves as they should be it's, not to say that if i'm a nurse right or i'm a nurse practitioner which.

Gary Norman: I have one right now, who, I think, is not as disabilities where's my former primary care Doc is not that they're bad people or even incompetent professionals but I.

Gary Norman: Think incompetent in the sense that.

Gary Norman: Any professional should first do no harm and they should also serve customers and the healthcare system to the best ability possible.

Gary Norman: If that means your patient is green blue or otherwise, then you should really meet that patient where they are unfortunately these disparities grow from the sense that every patient is the same and that's just not true.

Nadine Vogel: Right right and I, and I think that you know and again norma you and I have had these conversations that you know we talked about a equality it doesn't mean we should be treating everyone the same where we need to give everyone the same access.

Nadine Vogel: Right and and. that's what you're saying.

Gary Norman: I think so yeah and.

Gary Norman: I just think also that we really need to work with providers or.

Gary Norman: deliverers of healthcare and really nudge them on this issue because there's a lot of work to do in terms of making health care, accessible, inclusive and usable by people with disabilities and and not in some sort of charity model, but I would. Say for.

Gary Norman: Everybody we're customers doctor or our service delivery provider, where the customers, they need to do a better job of being good customer service oriented practitioners.

Nadine Vogel: Absolutely, and you know it's interesting I I just this week, I had a conversation with a major hospital, I talked to hospitals and med schools and teaching hospitals, all the time.

Nadine Vogel: About allowance from work to come in and train and do some training at the Med school level nursing schools, you know grand rounds anything, and you know it's always I always get met with Oh well, that's yeah that's interesting but.

Nadine Vogel: it's always the but but we don't time but we don't need it, but whatever and it's just very frustrating as as the parent of an adult with daughter with disabilities and norma the same for you, I know.

Nadine Vogel: This is something that's like nails on a chalkboard for us.

Gary Norman: I hear you work I think we're making progress, and I think the health care industry is making progress, but there's there's a lot of work to do, hence why put together a panel that's happening tomorrow on American healthcare lawyers on health care accessibility.

Nadine Vogel: Oh excellent excellent So how do you feel about technology right, it means that you know, especially with covid and everybody, you have these.

Nadine Vogel: You know virtual doctor's visits, all of these things So how do you feel the technology weaves into this do you think it's helpful, do you think it's hurtful relative to these disparities that we're talking about.

Gary Norman: I think technology provides incredible amounts of promise whether that's Tele health or the ability to me with you via zoom platform or any other kind of online platform, perhaps.

Gary Norman: Or whether that is perhaps even conducting mediation online I was just talking with the court system earlier this afternoon about making sure that future online ADR assess is successful, so that.

Gary Norman: Is short there's a lot of promise and a lot opportunity, maybe wasn't present 10 or 15 years ago, on the other hand, with technology or emerging technologies, we also have some.

Gary Norman: Some guardrails and we need to be aware of in terms of whether they were some disparities bias or discrimination so.

Gary Norman: I spoke earlier this year at the International Conference trying to provide the disability lawyer perspective about technology, I would say that i'm a tech optimist, but I also am.

Gary Norman: Someone who you know personally struggles with V-P-Ns every day, I know that technology could also worse in these conditions, so I think machine learning.

Gary Norman: Probably has already done a lot of good for people and could do good, but we need to make sure that we have fair algorithms that they don't worsen discrimination and one example I talked about is is sort of the article I hope to eventually get publishes.

Gary Norman: Working remotely as an attorney really has helped me lessen my stress is saved me a lot of money in terms of transportation costs with lift.

Gary Norman: On the other hand, we are aware that there are instances with employers, which employment by people disabilities never been great, but it can only perhaps worseen potentially because of Ai, we know that.

Gary Norman: There is like is zip recruiter type platforms that's just one that comes to mind where they're using different kinds of Ai technologies and.

Gary Norman: If we're not careful about how we make sure that we include people of color people disabilities as we set up those systems those systems will perhaps exclude more people than the help and I think that will be to the lessening of all of us.

Nadine Vogel: yeah no I agree completely.

Nadine Vogel: Though you know, sometimes on this show not too often, but sometimes we get a little controversial and I know I make Norma nervous.

Gary Norman: Like.

Nadine Vogel: Oh, where are we going where are we going on, but I believe that that Gary you have been a voice for death with dignity legislation in Maryland and and I know that that is an extremely personal and highly controversial topic on anything you could share with us about that.

Gary Norman: yeah, so I think that i've been a voice in that issue in Maryland even nationally now because.

Gary Norman: I see it as a libertarian at heart i'm a centerist libertarian, so I think as much as as I question it for myself.

Gary Norman: I want people have choice, I fear that, with some movements, like the disability rights movement there's kind of.

Gary Norman: You have to think this certain way to it sometimes, and I think that in my observations into general assembly in Maryland has been true of the disability rights community.

Gary Norman: And I also fear as much as is willing to say doctors need to do better, I don't think anybody is our enemy as a movement.

Gary Norman: I think that our powers and the power relationship and partnership, so a lot of the conversation on this issue, unfortunately, to my point of view, has been very negative like doctors are here to harm people with disabilities.

Gary Norman: I think we need more doctors with disabilities or nurses with disabilities, I think perhaps we need more training to the Community.

Gary Norman: Of those who are medical practitioners without disabilities but I don't think any of them mean harm or are our enemy.

Gary Norman: And so i've promoted the concept and testified in favor of legislation or Maryland because hey I just I think it's A personal choice.

Gary Norman: and B I think it has enough safeguards for the most part in the Statute, at least in Maryland to where it should be a choice for people it doesn't mean that.

Gary Norman: i'm i'm not one to force my beliefs on anyone, so I don't think necessarily that what's good for me is good for the two of you, but I definitely think if you to work with people with disabilities, I don't know for sure.

Gary Norman: You should have that choice and that's why I supported it and then, on a personal level, I don't know if this makes my feeling sound inappropriate or trite.

Gary Norman: But having put down two dogs now I don't see why we can be so compassionate and understanding of our animals, and when we can't be equally the same with our loved ones who are facing terminal illness.

Gary Norman: I just I came to came to the issue in that vein, as well as a dog handler who my two guide dog partners have been the best friends in my life and I wouldn't anything.

Gary Norman: For them, then I wouldn't want from my wife for for myself yeah.

Nadine Vogel: yeah no I I yeah I couldn't agree more.

Nadine Vogel: I couldn't agree more.

Nadine Vogel: it's so you know Gary i'm glad you mentioned your wife, I believe that you referred to your marriage as I think i've heard you say a mixed marriage makeup meaning one person is disabled, the other is not so i'd love for you to share a little bit about that if you if you don't mind.

Gary Norman: yeah i'm was incredibly blessed to meet my wife, with my first guide dog langer and then I kind of consider like the three of us got married together.

Gary Norman: Five years of langers career, he was my bachelor kind of dog and then next five years.

Gary Norman: Our partnership and then in four years of retirement, he was kind of our family dog that my wife him and I got married together and then each of my dogs had been close friends of my wife and just really like our kids in a way, and.

Gary Norman: So I am really blessed to be married and in the way up I think of it as sort of a mixed marriage, where I have a disability.

Gary Norman: And she doesn't I think that's positive and negative I think perhaps what I told some kids at college at a speech I gave a couple years ago you can't on we've the threads of your life so.

Gary Norman: What I like maybe not to have my disability, I think, I think, maybe some days, yes, on the other hand, what I'd be.

Gary Norman: As good of a dog handler or I hope a decent husband I don't know, maybe not.

Gary Norman: would life be as interesting or unique I don't know, maybe not.

Gary Norman: On the other hand, my wife has some incredible disability advocates and good human being.

Gary Norman: she's also had to encounter the same issue, as I have from negative attitudes to bias to people glancing at us in a restaurant or at a bistro because wow there's a guide dog and a blind person and how could this sighted person ever like live with a blind person kind of crap.

Gary Norman: out so it's positive and negative, but I think it's a really rich journey, and I hope my wife finds a way to kind of share her her point of view on kind of the the marriage, with a blind guy.

Nadine Vogel: well. you know.

Nadine Vogel: This interview has been so interesting you know, a couple of times you've referred to the state of the state, if you will, as you know, the inclusion, the revolution.

Nadine Vogel: Right yeah and I love that, and you know we're just about out of time, but before we end I would love for you to share with us and our listeners why you refer to it as a revolution.

Gary Norman: So i've heard that term I was fortunate to travel as a foreign policy fellow that's not the exact title but that's a shorter version but.

Gary Norman: The Marshall Fund in 2008 my first guide dog and i've remained active, both in dialogue policy work, even through a mini grants my.

Gary Norman: Partner Boston and I got for a year from them and then, more recently, at a tech inclusion some in December 2020 and I wish I could say I coined that term, but that would be dishonest.

Gary Norman: I was co moderating the workshop on inclusion, to make sure that disability was discussed in many ways, and we had this really unique former fellow like myself, but from New York say we're living in the inclusion revolution.

Gary Norman: And that just resonated with me and it, it still has because I think we've all lived, not only during negative stuff like covid and all these unfortunate people have died because of it, but we've also lived through this revolutionary revolutionary discussion where.

Gary Norman: I think probably my colleagues at the lichen Commission think there's a lot more work to do, but I feel like maybe people of color starting to be recognized in the way that as white Americans we've never really heard them.

Gary Norman: And so I think it's a revolution in that sense.

Gary Norman: More people are feeling like they have a voice and you know for a country that's based on the world to be free that's that's incredibly not only living with our tenants but that's freeing for our fellow citizens.

Nadine Vogel: Right. wow.

NORMA STANLEY: that's it I think it's part of the revolution is that I think people are realizing the actual power and actually tried to use it and, like you said, the greater Community actually hearing what we've been trying to say for so many years, and so that's the blessing and i'm hoping that it.

NORMA STANLEY: And the people disabilities others who have been overlooked and untapped and neglected, this is our time to make some things happen.

Gary Norman: And what's great about this country is that we have a trajectory or more freedoms, but sometimes we don't tap people we haven't always stopped people of color we haven't always tap people with disabilities and.

Gary Norman: Hopefully these kind of movements are teaching us that there are so many more threads to the fabric that that make this rich whole and, ultimately, like benefit economically and emotionally and spiritually and that will only make us a much better country in the end.

Nadine Vogel: At the end of the day, you know, none of us, or just one thing it's about that intersectionality.

Gary Norman: And I think that.

Nadine Vogel: that's what it's about so Gary we are oh my gosh we are so out of time, I feel like we could have talked for at least another half hour, but I want to thank you so much for joining the show and just illustrating once again that disabled lives matter, so thank you for joining us.

Gary Norman: Thank you for having me on the show.

Nadine Vogel: Absolutely. so norma another great show thank.You. For being my amazing co host.

NORMA STANLEY: Thank you for allowing me to do that.

Nadine Vogel: Absolutely, and to our listeners We look forward to seeing you on another episode of disabled lives matter. bye everybody.

Gary Norman: bye bye.

NORMA STANLEY: bye nice to see. 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-Ep24_Leslie_Lipson

S1-Ep24_Leslie_Lipson

August 16, 2021

Disabled Lives Matter
Season 1, Episode 23
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Leslie Lipson

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 everyone, this is nadine vogel your co host of disabled lives matter, this is a podcast but, along with my co host Norma Stanley Hello norma.

NORMA STANLEY: hey. everybody how are you doing today.

Nadine Vogel: Good. This is more than a podcast right norma this is.

Nadine Vogel: it's a movement 

NORMA STANLEY: World changing.

Nadine Vogel:  right and today, this movement is going to grow even more, because we are joined by Leslie lipson and Leslie gosh you are an advocate from an educational standpoint legal strategy about legal and education so i'm just telling us a little bit about yourself.

Leslie Lipson (she, her, hers): Sure, and thank you so much norma and nadine for having me today so um I am an attorney and i've been practicing in the field of disability civil rights for around 20 years.

Leslie Lipson (she, her, hers): And i've done lots of different kinds of work but i'm always just continually attracted to working on behalf of kids especially kids whose.

Leslie Lipson (she, her, hers): Whose behavior other people find challenging it's probably my favorite kinda kind of group that really I feel really fierce about that and.

Leslie Lipson (she, her, hers): And about two and a half years ago, so for about 17 years I was with the Georgia advocacy office, which is a statewide nonprofit doing work.

Leslie Lipson (she, her, hers): on behalf of people with disabilities who experienced abuse and neglect and about two and half years ago I went on my own, and I have my own consulting firm and I do work for businesses and nonprofits and mostly about the kids.

Leslie Lipson (she, her, hers): i'm a parent, I have two kids. in Canada.

Nadine Vogel: so i'm curious what got you interested in disability rights, specifically and then even more so for children.

Leslie Lipson (she, her, hers): Well, I think, like most people in this work, I have a personal genesis story I don't think you can really get away from that, but I have hidden disabilities myself and.

Leslie Lipson (she, her, hers): had some pieces as a kid that were really then occasionally as an adult that had been really challenging and I think I thought that disabled people were something different, and somewhere in college and I was a disability student services and I realized that.

Leslie Lipson (she, her, hers): That was me to.

Leslie Lipson (she, her, hers): Re all have different.

Leslie Lipson (she, her, hers): Different parts of our identity for, and then I decided, I wanted to go to law school and I always wanted to do this, I actually interned in law school in this work and my second year law school and so.

Leslie Lipson (she, her, hers): This is just always been my passion.

Nadine Vogel: got it well you know for norma and me we're both special needs moms and so obviously our passion as well i'm i'm curious, I know, one of the things you were involved in was safe schools initiative could you tell us a little bit about what that is.

Leslie Lipson (she, her, hers): Yes, absolutely so in Georgia, up until I guess about.

Leslie Lipson (she, her, hers): me, maybe 25th no 2012

Leslie Lipson (she, her, hers): You could restrain and seclude meaning, you could tie up lock up put in a box put it, a cardboard box plywood box i've seen all these you can use ripcords or handcuffs or anything you want to restrain and seclude any kid at anytime for any reason, and not tell their parents.

Leslie Lipson (she, her, hers): And that was that is still the law of the land.

Leslie Lipson (she, her, hers): federally and many states have no legal protections for students experiencing these what we call restraint and seclusion in public schools.

Nadine Vogel: Oh, my gosh.

Leslie Lipson (she, her, hers): And I was the leader but along with lots of other people, I mean it was a big effort to outlaw the use of seclusion in Georgia and we greatly limited the use of restraint and the research is very clear and it makes sense if someone tried to take you and lock you up in a box.

Leslie Lipson (she, her, hers): You fight them really hard on the way the best way to reduce the use of restraint.

Leslie Lipson (she, her, hers): is to reduce the use of seclusion is to outlaw the use of seclution, but I would really like to see restraint, also outlawed, and so I worked on that for years.

Nadine Vogel: And we are.

Nadine Vogel: On protections well i'm curious because i'm actually appauld.

Nadine Vogel: Generally, this is, this is still Okay, so what is happening on a federal level if anything to outlaw this.

Leslie Lipson (she, her, hers): So there currently is and there has been for several years, a federal.

Leslie Lipson (she, her, hers): package of legislation that I think it's called I have to Google, right now, but I think it's called it starts with the K Okay, I just want to find the acronym but it's to.

Leslie Lipson (she, her, hers): To do the same ideas to outlaw the use of restraint and seclusion across the nation, the idea being if you live one mile to the East, a one mile to the West you shouldn't have the experience of restraint and seclusion and generally if you can't do this in you know.

Leslie Lipson (she, her, hers): that some of these actions are considered by the United Nations to be you know illegal.

Leslie Lipson (she, her, hers): Okay, for some reason.

Leslie Lipson (she, her, hers): against kids with disabilities it's okay.

NORMA STANLEY: definitely needs to change.

NORMA STANLEY: i'm sure.

NORMA STANLEY: i'm sure the parents who encounter situations like that are not too happy.

Leslie Lipson (she, her, hers): No, no, I think we have to remember the real victims are kids.

Leslie Lipson (she, her, hers): Were teaching kids you know it's really amazing that we talked about what do we talk about with kids with disabilities, we say what are what our kids are supposed to keep your hands to your.

Nadine Vogel: self.  Right.

Leslie Lipson (she, her, hers): If you're angry what should you use.

Nadine Vogel: Your words.

Leslie Lipson (she, her, hers): Right.

Nadine Vogel: And we went to school, we remember.

Leslie Lipson (she, her, hers): I know i'm enjoying y'all y'all are good y'all are good.

Leslie Lipson (she, her, hers): You can do the presentation.

Leslie Lipson (she, her, hers): So we you know we learned a lot from that.

Nadine Vogel: Right.

Leslie Lipson (she, her, hers): kids are learning. A lot.

Nadine Vogel: i'm shocked to tell you the truth, and I would think this is especially difficult for those students that are on the autism spectrum where behavioral issues, probably come out more.

Nadine Vogel: than most.

Leslie Lipson (she, her, hers): yeah and I think a lot of it is super predictable the kids who are sensory defensive you'll see written in people's IEP when this kids upset do not.

Leslie Lipson (she, her, hers): Because it's very predictable that the kids going to be defensive and it's going to feel like that's a threat.

Leslie Lipson (she, her, hers): then you see people you know who are not looking at that, and then we see school initiate juvenile court charges on kids for behavior That is exactly predictable written verbatim in IEP don't do this.

Nadine Vogel: Right.

Nadine Vogel: right, so if it's in the IEP, this makes this even worse because everybody's supposed to be following the IEP the individualized education plan.

Leslie Lipson (she, her, hers): But if you have you know, unfortunately, in America kids with disabilities, especially kids psychiatric disabilities kids with autism.

Leslie Lipson (she, her, hers): Especially black youth black boys.

Leslie Lipson (she, her, hers): Even kids who are gender diverse or who are LGBTQ on that entire beautiful rainbow.

Leslie Lipson (she, her, hers): kids are perceived to be even more of a threat to go these multiple identities that make.

Leslie Lipson (she, her, hers): Not only are they experiencing really harsh discipline practices um they're expensive experiencing those practices more often and and it's more of them.

Nadine Vogel: RIght.  Oh, my gosh well.

NORMA STANLEY: On.

NORMA STANLEY: This has been something that's been going on in you know, in the in the black Community for a long time the whole special education perspective.

NORMA STANLEY: You know when they put the kids in detention or in special programs when they seem to be acting up quote unquote and generally it's because of.

NORMA STANLEY: You know, a special need, if they're on autism spectrum and all these things may not have been diagnosed and they get put into that pipeline of detention and going to jail, of things they don't even realize that they've done and things like that can.

NORMA STANLEY: happen and before you know it lives are ruined and because it's either been undiagnosed or people just don't care and not paying attention to the way they need to be paying attention.

Nadine Vogel: yeah absolutely. well leslie i've heard you said something or you intended to say saying something about you know why is special education.

Nadine Vogel: Not special your education, and you know when I when I first heard that I kind of laughed a little bit, but but it's it's serious, so I wonder if you could explain that a little bit.

Leslie Lipson (she, her, hers): So I don't remember where I read it, and I cannot take credit for it.

Leslie Lipson (she, her, hers): But the special education is often neither special nor education.

Leslie Lipson (she, her, hers): And so, even though the propaganda around special education is it's highly individualized for each kid to get what they need in a therapeutic way you know we know all of this language around it right.

Leslie Lipson (she, her, hers): Well, we know that many things are one size fits none programs that they call it the autism classroom but that doesn't necessarily mean it fits kids needs with autism, one of the problems in America, the way we've structured our education is we've structured it around eligibility.

Leslie Lipson (she, her, hers): And not around services so let's take a service for fun let's take like note taking let's think about all the different.

Leslie Lipson (she, her, hers): types of students that might need note taking right, you might have had a traumatic brain injury or learning disability.

Leslie Lipson (she, her, hers): You might have auditory processing disorder, you might have broken your arm, although you probably wouldn't be eligible for IDA but you get my point, you may have limited mobility they're all of these different areas right that might need a note taker.

Leslie Lipson (she, her, hers): But we make that classification based upon usually eligibility or behavioral support you may have you know kids with OCD coming back after this covid 19 disruption contamination OCD i'm feeling for them.

Nadine Vogel: yeah.

Leslie Lipson (she, her, hers): I really want to.

Nadine Vogel: Talk about that, after as well.

Leslie Lipson (she, her, hers): Right, and so you have like you have like pockets of services like maybe a small groups classroom integrated or.

Leslie Lipson (she, her, hers): Reduced modified homework for kids that have less endurance for homework and that may be kids who have chemo right now, or maybe kids who are just run out after what is necessary at school, but instead we've created these.

Leslie Lipson (she, her, hers): Eligibility and placement our locations totally based upon.

Leslie Lipson (she, her, hers): Disability labels which really isn't smart fiscally isn't smart for human rights perspective isn't smart for our Community definitely isn't a smart smart for our families.

Leslie Lipson (she, her, hers): Your parents kids have disabilities you got your kids in different schools have different schedules and different places, siblings are such a protection for kids okay.

Leslie Lipson (she, her, hers): I have a lot to say about it.

Nadine Vogel: We have to read to go to commercial break, but as soon as we come back norma I think we should really start talking about you know covid and everybody go back to school and what that's gonna look like relative to these topics so listeners don't go anywhere we'll be back in just a minute.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

Nadine Vogel: Hello Hello everyone and welcome back to today's episode of disabled lives matter I am joined by my fabulous co host norma Stanley norma.

NORMA STANLEY: How you guys doing.

Nadine Vogel: Good and we in Norma I are just so excited to be speaking with leslie lipson today we're talking about.

Nadine Vogel: The state of the state, relative to children with disabilities in the school system and some of the horrific horrific practices that are still going on.

Nadine Vogel: So so Leslie let me ask you this, I mean so many kids have been out of at a physical school right, you know being homeschooled which we know is just a whole issue right there but.

Nadine Vogel: Some of the things that you're talking about you know how do we successfully reintegrate I guess i'll say children with disabilities back into in person learning and then you know let's talk about what that actually means relative to some of the issues that we've been talking about.

Leslie Lipson (she, her, hers): So it's going to be fascinating you know, seeing what happens because, like.

Leslie Lipson (she, her, hers): You know we're all three parents of kids with disabilities, like, if I had an eight year old kid with a developmental disability and we've all seen the covid health outcomes for.

Leslie Lipson (she, her, hers): kids a developmental disabilities and eight year olds aren't you know vaccinations a personal decision, but there are no eight year olds that are vaccinated.

Leslie Lipson (she, her, hers): They might not be going back in person. I think one thing is that we do still have I actually just looked I know this is a national Program.

Leslie Lipson (she, her, hers): But just looking quickly at my own state this morning 14.7% of kids 12 to 17 are vaccinated in Georgia.

Leslie Lipson (she, her, hers): So that's 14% of kids eligible for vaccination or and not disability specific right, and so, then we're thinking about kids under the age of 12 that aren't vaccinated at all, and we do know the Community spread is very small within public schools we've got very good data on that now.

Leslie Lipson (she, her, hers): But they're you know, in small pockets, so I think what's going to be interesting what we're seeing nationally, is that districts are.

Leslie Lipson (she, her, hers): or States are having cyber schools like instead of like your school like your teacher doing distance learning they're these now kind of.

Leslie Lipson (she, her, hers): Individual schools, who are cyber who are virtual and then your local schools where you would go for face to face instruction.

Leslie Lipson (she, her, hers): So I think it'll be really interesting to see how schools choose to financially and programmatically continue providing some virtual learning opportunities, especially for kids who.

Leslie Lipson (she, her, hers): I think it's pretty arguable, especially if they're immune compromised it's really not safe yet.

Leslie Lipson (she, her, hers): And then I think I may be so interesting nadine and norma to hear like what you did in August to get your now adults, but your kids ready to go back to school every September like what did y'all do.

Nadine Vogel: Oh, my gosh.

Norma.

NORMA STANLEY: It was a big deal, I mean I was getting on the school to school clothes and preparing for that whole thing I mean Sierra is just.

NORMA STANLEY: always have just getting her out of the house anyway, even the same thing getting back in the day program was the same thing, I mean you know she just started back this past week and um you know I want to make sure that everything would be the way it needs to be before I was telling her back and.

Nadine Vogel: and for so many kids you know, unless they're in you know you're around school.

Nadine Vogel: Right so so that now is the education stop for a couple of months, but so typically does therapies occupational physical.

Nadine Vogel: right all of the related services so yes kind of working your way back and getting the brain back functioning again.

Nadine Vogel: And and just you know the schedule right I think that's that adjustment is an adjustment for any child typical children when you add disability to that, depending on the nature and severity of the disability I think it's just another layer

NORMA STANLEY: a whole other layer I know .

NORMA STANLEY: Sierra was glad to see her her her colleagues in the day program she was happy to see them all.

NORMA STANLEY: On but again I was rushing back because I wasn't sure and until they made me sure that it was going to be safe for her she wasn't gonna go back so, but they did what they need to do, and everybody there has been excellent, it is all adults, though, so it's a different thing but.

NORMA STANLEY: You know how can I feel for the parents only because you know especially the younger children but it's a whole nother that's a lot of stress on these parents and.

NORMA STANLEY: those who also need to go back to work um it's a lot of stress and that doesn't help when the school system is doing those kinds of things that you're having to address and try to put a stop to in terms of the abuse.

Nadine Vogel: Right and, leslie, I mean correct me if i'm wrong, but I would think you know when kids, especially if you have developmental disabilities behavioral issues.

Nadine Vogel: You know if they're on a break, so to speak, and then you put them back into a more structured environment I would think some of the the behavioral issues kind of come out at least at the beginning.

Nadine Vogel: And i'm assuming that being away from physical space school for so long, this is only going to really pronounce this even more, I mean is that true.

Leslie Lipson (she, her, hers): I mean we're worried to in the literature like where educational folks leadership is talking about what's going on, I think we're all there's a lot of worry about really increased.

Leslie Lipson (she, her, hers): Harsh discipline policies, I mean you could see like a kid who was in first grade and march of 2020 they're going back a third grader well the behavioral expectations for a first grader third grader they're pretty different.

Leslie Lipson (she, her, hers): Right these kids have really lost, you know we're very focused on academic loss which is kind of interesting because I think what we're really going to see, as people have really lost the context of the role of student.

Leslie Lipson (she, her, hers): So, like packing a school lunch opening it up and eating it changing classes, bringing your books going to sleep on time writing the school bus I got all these pieces to being a student.

Leslie Lipson (she, her, hers): That we really I would encourage parents and teachers for kids, especially with kids have disabilities but really with all kids to focus on the role of student before we're focused on this academic learning loss or missed services.

Leslie Lipson (she, her, hers): As an adult like I kind of relate to it, you know when you first go to work for eight hours a day, I mean you are exhausted.

Leslie Lipson (she, her, hers): Right yeah most of us are starting back you know, they were not five days a week restart back three days a week in the office you know, and these kids in school it's going to be like, here we come in August or September and like here you go five days a week, full days I mean it's.

Nadine Vogel: Right.

Nadine Vogel: they're not easing into it.

Leslie Lipson (she, her, hers): No, but I think parents have suggestions for parents.

Leslie Lipson (she, her, hers): would be definitely working back to that schedule try to get in pre planning get your kid to go visit the school meet their teachers, obviously it depends on your where you are.

Leslie Lipson (she, her, hers): Personally, as a family and where you are your State be comfortable with whatever the distancing or mask measures are some state mandated that some dates dates have not.

Leslie Lipson (she, her, hers): And I think, maybe doing some academic bridge work I think most of the things that we usually do to get our kids ready to go back in the fall would be similar.

Leslie Lipson (she, her, hers): um and I think that the most interesting thing and the I think I think this is fascinating because you've done this for many years, is that, whereas normally the school holds all the information about the kid academically and socially.

Leslie Lipson (she, her, hers): Now the parents hold all the information.

Nadine Vogel: And that is interesting.

Leslie Lipson (she, her, hers): isn't it.

Nadine Vogel: It is.

Leslie Lipson (she, her, hers): doesn't love the performance, who really knows what's.

Leslie Lipson (she, her, hers): going on with that kid.

Nadine Vogel: Well, and that's true it always I always said, the parent is.

Leslie Lipson (she, her, hers): An A-D, but I think a lot of parents who kind of throwing their hands up and said.

Leslie Lipson (she, her, hers): they're special they're educators and I didn't really know how to teach my kid but i've heard from parents who said they told me my kid could never do X, Y or Z.

Leslie Lipson (she, her, hers): And over and over the past 16 months, you know what I can do that they've done it interesting and then I think, on the other side, I think you know, there are a lot of, especially for psychiatric disabilities covid it has not been kind.

Leslie Lipson (she, her, hers): Right, a lot of kids and then we kids with acquire trauma drain this time.

Nadine Vogel: Oh yeah absolutely.

Leslie Lipson (she, her, hers): Post traumatic stress.

Leslie Lipson (she, her, hers): Now we have 600,000 people that died in America there's a lot of grief.

Leslie Lipson (she, her, hers): And then there's been a lot of financial repercussions for families and we've been through.

Leslie Lipson (she, her, hers): You know incredible.

Leslie Lipson (she, her, hers): Time of.

Leslie Lipson (she, her, hers): Protests and attention on.

Leslie Lipson (she, her, hers): on racial terror and injustice and all of these things our kids have experienced since they've been before they've been they haven't been students, so I think we have a we have a lot to come to right.

Nadine Vogel: Well, you know it's interesting because I think he said before I come back you said a child left a first grader now they're back a third grader and behavioral expectations, but I just went through my head was what about the child that left as an elementary school student.

Nadine Vogel: and is now in middle school or junior high school or the left to junior high another in high school.

Nadine Vogel: So a whole nother range of processes, maybe they never changed classes, you know we don't entry school, and now they have to do it so.

Nadine Vogel: I just you know made me think of all of these issues that you know, especially as parents, I always felt like the burden of proof of needed for a child, the burden of just about everything is often on the parent, and I think this is no different.

Leslie Lipson (she, her, hers): you're not feeling like that that is let's not get i'm saying like let's let's honor the experience of what is educational advocacy in America.

Leslie Lipson (she, her, hers): It is 100% people will image kids with disabilities as a burden, I would clearly argue it's not the kids have disabilities is the burden it's the system, yes, that puts all of the all of all of the the pulling all the levers pretty much is on parents.

Leslie Lipson (she, her, hers): Who already are parents, because of disabilities already in a country that's pretty hostile.

Leslie Lipson (she, her, hers): To to family supports.

Leslie Lipson (she, her, hers): yeah in general right so I think that's really true and I appreciate you saying it nadine because I just don't think I can't I read an article yesterday piss me off sorry that's.

Leslie Lipson (she, her, hers): made me so mad that was on parent engagement.

Leslie Lipson (she, her, hers): Okay, like, I mean I was i'm all for parent engagement, but what i've seen in my career.

Leslie Lipson (she, her, hers): is very powerful parents.

Leslie Lipson (she, her, hers): Who can't pull levers, they need to pull, for you know for 1000 reasons.

Leslie Lipson (she, her, hers): That it's not about unfortunately one of the things that binds us together as parents, because of disabilities is it actually does not matter your race or your income listen, some of it helps a lot, but like people can't pull the levers, because the system is so unbalanced.

Nadine Vogel: Right.

NORMA STANLEY: Yes.

Leslie Lipson: What do you think.

Nadine Vogel: yeah I mean certainly the systemic inequalities, and I mean it exists, I always used to feel bad when we would go in and have our IEPs and I have like 20 people there, I had all my peeps you know one to match the school districts.

Nadine Vogel: And I always worried about you know the parents who couldn't attend the IEP because they couldn't get off from work now you have the financial ability to do that or or English is not their first language right, I mean it's.

Leslie Lipson (she, her, hers): Not their language at all.

Nadine Vogel: Right, I mean it's confusing enough for those of us who actually it is you know, and it was always very upsetting to me to see a child who I knew.

Nadine Vogel: Could you know needed just as much, if not more support, as my daughter yet couldn't access what they needed because of that that was really and I think the parents just felt.

Nadine Vogel: an even greater burden because of that, and something that they didn't have control of I mean norma if you had I don't you feel that way.

NORMA STANLEY: Absolutely, and you know because of lack of control, depending on i'm still finding out again about parents who.

NORMA STANLEY: are not getting some of the services they need and they've been here all these years, I mean there's one mother would just call me the help.

NORMA STANLEY: She had a 21 year old I mean you know he's just coming out of the system, but she has not had the help.

NORMA STANLEY: That supposed to be there, she lives in a place where he can't walk he's immobile in terms of physical challenges and another one level to the House to the next, just to put a bed and put him on it and slide him down.

NORMA STANLEY: Imagine, I mean this is a 68 year old woman.

NORMA STANLEY: You know i'm so she's going through all this and it's like i've got to find a way to get into some help so much is still being you know falling through the cracks when all these organizations out there is one of the things that really concerns me.

Nadine Vogel: is not unique just to.

Nadine Vogel: Georgia right.

NORMA STANLEY: I mean no.

Nadine Vogel: this is in all states, but just something I did want to ask relative to Georgia, specifically i've had many parents of kids with disabilities tell me that when it comes to special education or services in the state of Georgia, that it's Atlanta and it's every place else.

Nadine Vogel: That it's very unequal, if you will, even just within the state is that is that true.

NORMA VOGEL: Yes.

Leslie Lipson (she, her, hers): Interesting data on it, depending on what you're after so obviously as norma as nodding school funding is a huge difference and there's actually a lawsuit currently in Georgia is going on for quite some time around funding.

Leslie Lipson (she, her, hers): equalization between rural and urban but that's for sure, an issue now it's interesting like what your goals are so a lot of rural places don't hide away or segregate to the same level of kids with disabilities, because that's pretty expensive.

Nadine Vogel:  Interesting.

Leslie Lipson (she, her, hers): so from the fabric sense like who do we go to faith, who do we worship with.

Leslie Lipson (she, her, hers): And who and who do we hang out with on birthday parties and the weekends and who's in my class and who are family, friends you'll see, in a sense of the data says a higher level of social an academic integration.

Leslie Lipson (she, her, hers): and rural America, because they just don't have what we call like a shadow system like separate church services.

Leslie Lipson (she, her, hers): and separate transportation and separate have you know separate social things like they don't have the infrastructure to provide the shadow system that is this segregated world.

Leslie Lipson (she, her, hers): um now for some people, they say, you know I really want all that this you know, bring this to my rural county um we think, as far as the lifetime, you know, having more friends and family and connections, because the unfortunate thing is we're not always going to be around at some point.

Nadine Vogel: right.

Leslie Lipson (she, her, hers): But yes it is Atlanta and outside of Atlanta, especially when you think about psychiatric services, I think there are two or three child psychiatry south of macon.

Leslie Lipson (she, her, hers): A number of play that's mostly like I think one or two about Boston three or four in savannah I mean, so we definitely have and for medical services, you know people got to drive to Atlanta, all the time, you know.

Leslie Lipson (she, her, hers): Norma I feel like I should not be talking y'all should be.

NORMA STANLEY: Talking, no, no.

Nadine Vogel: Listen.

NORMA STANLEY: the whole dental situation.

NORMA STANLEY: I mean people come in Tennessee for to get dental care for their kids with disabilities, because a lot of dentists still don't get it, so this globalization that we all tend to go to and people.

Leslie Lipson (she, her, hers): yeah.

NORMA STANLEY: yeah DVD foundation is where we go.

NORMA STANLEY: select yeah it's a real situation it's a real situation, I mean i'm coming from New York New York actually used to have a really big programs for people with disabilities, I didn't know that when I was living in New York or I would have stayed, but I love living in Atlanta.

NORMA STANLEY: You know until I got here that new york had to do some work too.

NORMA STANLEY: Still it's still.

Nadine Vogel: Live we had lived in Los Angeles, when my.

Nadine Vogel: Older one was was young, and we ended up in a charter school but yeah there were so many issues and we went after the schools, but we moved back east.

Nadine Vogel: We were very specific about where we move, not just the state like we had moved to New Jersey, which county and what part of the county all because of the things you're talking about Leslie.

Leslie Lipson (she, her, hers): Burden that's such a burden, not your kid, but you have to that you have to structure the rest of your life around that and can I tell you about something I read recently that's been cracking me up.

Leslie Lipson (she, her, hers): It said.

Leslie Lipson (she, her, hers): Only in America, do we insure our teeth and our eyes and then the rest of our body separately like who came up with that i've been laughing I mean it really is asinine.

Leslie Lipson (she, her, hers): Like who decided it was teeth eyes and the rest of your body like why isn't it like your left hand.

Leslie Lipson (she, her, hers): Your kidney and the rest of I mean it really is. Okay, sorry.

Leslie Lipson (she, her, hers): you're you're in.

Nadine Vogel: Our society we treat physical health so different than mental health.

Leslie Lipson (she, her, hers): Well, that would be another now let's just be clear we're not insuring psychiatric health but that's.

Nadine Vogel: not really but, again, even the stigma in the schools and how the children are supported or not again, it is very different.

Nadine Vogel: And I find that going to go back to what you said earlier, the burden on the parents, I find that if the child has a behavioral related issue.

Nadine Vogel: Somehow it always ends up being more you know what is the parent not doing right or not doing right to cause that versus a child that has CP OK, we get it.

Leslie Lipson (she, her, hers): Oh no they'll still go after your your your pre you're in utero sorry yeah they'll still go after you so yeah the joke, the joke and it's not funny but the conversation amongst strategy is this first they'll blame the child.

Leslie Lipson (she, her, hers): And then they'll blame the parents yeah very rarely to hear people say what.

Leslie Lipson (she, her, hers): In our instruction is faulty one in our assumptions is faulty what our methodology is faulty what the grouping of kids and the match of the teacher is is problematic.

Leslie Lipson (she, her, hers): But those would be questions that would be running through because you know the faith obligation, the free and appropriate public education obligation does not exist between a parent and the child.

Leslie Lipson (she, her, hers): right and it is not a child's obligation to behave well enough for the school to educate the kid right the faith obligation is between.

Leslie Lipson (she, her, hers): A parent i'm sorry between a school and a student I just spent this morning working actually for Georgia, Casa, who i'm huge fan of and thank Thank God.

Leslie Lipson (she, her, hers): that the obligation is not supposedly legally other you know it is on depending on every single parent, because that would really, really further disadvantaged kids, but we also know it it's just a lot of untruth about it right.

Nadine Vogel: Right right absolutely.

Nadine Vogel: Absolutely well oh my gosh I just I just saw we are out of time.

Nadine Vogel: This flew I I know there's so much more we can talk about but Leslie Thank you so much for joining us today, this is a topic that is so important in.

Nadine Vogel: it's kind of hidden nobody's really talking about it too much, and I know that the the information that you shared while coming from Georgia, I know is very real in most states, if not all states around the country in some way, shape or form, so thank you so much for joining us norma.

Nadine Vogel: Thank you for another great session and for our listeners, thank you for joining us on another episode of disabled lives matter norma take us away.

NORMA STANLEY: You guys it's been a wonderful show be blessed until 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.

 

Podbean App

Play this podcast on Podbean App