Disabled Lives Matter
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.

 

S1-Ep23_Tawana_Williams

S1-Ep23_Tawana_Williams

August 12, 2021

Disabled Lives Matter
Season 1, Episode 23
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Tawana Williams

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 everybody, this is nadine vogel you are your co host of disabled lives matter, this is a podcast but actually it's more than a podcast it's a movement, and I am joined by norma stanley my amazing co host.

NORMA STANLEY: Hello everyone.

Nadine Vogel: hey normal this is going to be a really exciting episode and i'm like totally stoked abouth this.

NORMA STANLEY: Absolutely absolutely I mean this lady is amazing, and I am a big fan.

Nadine Vogel: Absolutely, so this amazing woman that we're kind of hinting about is to Tawana Williams.

Nadine Vogel: Tawana is known as the hope coach she's an award winning keynote motivational speaker a TV personality businesswoman humanitarian former talk show host.

Nadine Vogel: She's coming out with a movie I don't think anything is woman can't do on and, interestingly enough, Tawana was born without arms and parodies of her legs, which just makes her story that much more amazing so welcome Tawana.

tawana williams: Thank you, thank you ladies, how you doing.

Nadine Vogel: Good good better that we're on with you right now.

tawana williams: awesome awesome we're super excited about today, and you know, giving hope and letting people know that it's possible.

tawana williams: I i'm the hope coach tawana Williams your messenger of hope, help and inspiration.

tawana williams: And I was blessed to be born without arms and impaired use of my legs due to the drug the thalidomide that was given to my mother during pregnancy.

tawana williams: Then, my mother told me there was nothing that I could not do, and I believed her yes, I did, and I had a grandma Rogers that did not play with me and I was a little girl, I was four and a half years old.

tawana williams: One day she looked me in the eyes and she said T, you must not have needed arms because God didn't give them to you, she said nothing's missing if you don't have it.

tawana williams: Then you don't need it and those words continue to resonate throughout my soul, you know i've overcome some major adversities and challenges.

tawana williams: Throughout my life I was gang raped during a home invasion raped my my stepfather I was addicted to crack and cocaine for 10 long years.

tawana williams: i've experienced abortion motherhood a stroke and a mild heart attack, so I know that i'm here to give hope and to help you overcome whatever adversities and challenges, you may be facing in your life and that's why I am unarmed but dangerous and an eagle without wings. woo-hoo.

Nadine Vogel: i'm exhausted right.

Norma Stanley:  Wow.

Nadine Vogel: let's let's let's start with where you just ended right unarmed but dangerous, you have a book that you titled on unarmed but dangerous so talk to us a little bit about that.

tawana williams: yeah I title my book unarmed but dangerous the Tawana Williams story of relentless struggle and ultimate victory.

tawana williams: I titled it that way, because that's who I am you know the title is not about me not having arms it's about me using what I have you know it's not physical, this is a mental mindset that I have adopted.

tawana williams: long time ago that told me that I could do anything but fail I have that can do attitude, and you know that.

tawana williams: That self driven determination that's who I am and you know i'm so so when other people say I can't I let them know, let me show you how to figure it out.

tawana williams: You know I I've learned, you know that that.

tawana williams: That power, you know that power of being unarmed but dangerous because I realized that the title sounded like a weapon, but you know you don't need a weapon a gun.

tawana williams: Or you know your gun is your mind your skills your knowledge your abilities to soar like an eagle and so that's why I titled my book unarmed but dangerous because that's Who am I never stop.

Nadine Vogel: You know, norma, you and I talk all the time about mindset.

Nadine Vogel: Right, and you know and i'm so glad you said you did tawana, because you know all the time when we talk with people when they have physical disabilities, they say that but it's not physical it's about our mindset and knowing what we can do not, not even in spite it, but because of.

Nadine Vogel: Anything that's that's what you've done.

Nadine Vogel: experienced such adversity, more than any one person or a group of people.

Nadine Vogel: In a lifetime so talk to us a little bit about you know how you got from there to here right obviously there were times that were really difficult for you right and challenges so talk to us a little bit about that.

tawana williams: yeah you know it was hard challenges were hard for me, but that's my strength challenges came to make me strong I realized that over the years.

tawana williams: You know, every time I fell down I got up again and again and again, and you know growing up people would tell me you can't do this and you can't do that and not.

tawana williams: The next time they saw me I was doing what they said, I could not do because of the challenges, because of the mindset because of what my grandma Rogers.

tawana williams: told me and instilled in me as a child, you know my mom you know it was you know it was tough, especially as a child.

tawana williams: You know, I was picked on laughed at talked about mistreated ridiculed humiliated on a daily basis, sometimes until I realized that I had the power.

tawana williams: And the possession, you know what i'm saying, I had the power to win I had the power to soar, and so I just realized that i'm.

tawana williams: I could do this that I was fearfully and wonderfully made by God, just like everybody else, and so I just started moving on what I knew that I could actually do and it started working.

NORMA STANLEY: and

NORMA STANLEY: That is important when you realize your power, how did you turn that into your purpose, how did you go and make it something that other people could adopt and and learn how to fly themselves whatever challenges they were going through.

tawana williams: I made some significant changes into my life for my life, you know.

tawana williams: I started changing my mindset number one you know I started telling myself that I could do it, you know I had to give myself permission to get it done and I did it, you know with you know the possibilities of soaring.

tawana williams: I started talking to myself really and changing my thinking about who I was and what people said I was you know I had to change that thinking.

tawana williams: And then you know, the second change that I had to make was I had to change the company I kept because you know as a child as a teenager that's when.

tawana williams: It was tough for me peer pressure was hard for me, because I was a follower straight up I followed you say, I love you tawana.

tawana williams: I was a follower you know and so that's what how I got caught up in the drug addiction, you know I went to a party, I thought it was a.

tawana williams: dance party, it was a drug party and I didn't know it, it was a crack party and when I walk when I walked in my friend, put the crack pipe to my mouth and said pull on it Tawana and I did it and it.

tawana williams: consumed my life for 10 long years, and so what i'm really saying i'm change is what happened, for me, you know when I realized that I was bigger than crack that I was better than crack you know when my husband.

tawana williams: started praying for me and my grandma Roger started praying for me that's when change came into my life, and then the third significant change that I had to make was I had to change.

tawana williams: The way I saw myself because growing up everybody used to tell me oh you look funny or you're too short, you walk funny use it's weird not having arms yada yada yada and one day I was like.

tawana williams: Stop you know stop that mess, and so I started like I said I started realizing that I was fearfully and wonderfully made and created by God for good purpose, for you know for for the world, you know, and I realized.

tawana williams: That I could do anything but fail and then my husband told me years ago.

tawana williams: In 1996 as a matter of fact, because that's when I started speaking when my mindset really when things shifted in my life my husband toby and I had a conversation, he was like T.

tawana williams: You know, I was having a bad day that day I was having a pity party and he was like T, he said, wait a minute, he said, you weren't born this way for me.

tawana williams: me and our family, you were born this way to help other people, you know, because most people live defeated lives when they don't have to, and here you are without arms doing everything with your feet.

tawana williams: Changing lives getting hope showing people as possible, he said don't do it, and I did it I tried, what do you suggest it and it work so here, I am the hope coach giving hope this is our 26 year and i'm super excited about where I am in my wife.

Nadine Vogel: We know you I mean well, I was gonna say you know what you said was so important, we said so many.

Nadine Vogel: important things, you know that stood out for me about giving yourself permission yeah because we don't we don't do that you know.

Nadine Vogel: You really don't we never gives ourselves permission, whether it's to just take a break or do something for ourselves, whatever it is.

Nadine Vogel: And the other thing that I thought was really important was you know, change the company you keep because they say that you know we become the people we hang with.

Nadine Vogel: Right, so we, but you know, sometimes you get so deep into it it's hard to dig yourself out it's hard to see the end so so one of my questions is you know, have you had help along the way, who were your personal coaches your personal heroes that helped you dig your way out.

tawana williams: Absolutely i've got many of course my grandma Roger she passed away in 1999 however prior to her death, she was that foce that girl that.

tawana williams: Then that fierce woman in my ear That said, you can do it go do it, you know, and my husband toby who is by loudest cheerleader my biggest fan my pusher man, and you know and i'm a les brown platinum speaker so les brown he's one of my personal friends and mentors you know.

tawana williams: Dr Joe Dudley Dudley hair products i've got a list of people that are in my ear I have maximum people in my life that have more that do more.

tawana williams: That push me that you know that helped me along the way, and then we've got Dr creflo dollar and pastor Chad Beck and his beautiful wife we've got a lot of people in our lives that.

tawana williams: push us, and when I say us i'm talking about me and my husband toby because we're one but yeah I just do what I do.

tawana williams: Because I know that if i'm supposed to do this, and I have people in my life I surround myself with people who have more and do more, and they pushed me right into my greatness every time.

Nadine Vogel: So you know when we think about this.

Nadine Vogel: I can just imagine like my older daughter she's she's 30 she has disabilities, and you know she gets down on herself, for the way she looks and different things that she thinks she can't do, and so you know i'm just i'm actually i'm thinking of her as you're talking and you know i'm thinking.

Nadine Vogel: Especially when she was younger when she was about 12 she got into this, why me why was I born this way when I have these issues so if you were talking to your younger self right now.

Nadine Vogel: You know, maybe that teenager who's going through so many issues, anyway, what would you say what actual tips, would you give them and say do these three things, but you know I think that's a big deal.

tawana williams: It is well, I think one of the first things that I always say is up to give yourself permission, of course, tell yourself, yes, tell yourself it's possible.

tawana williams: You know and that's what I had to do, personally, years ago, you know even before the speaking i'm a.

tawana williams: lifestyle that i'm in right now, you know I had to tell myself on a daily basis, and then I had to start focusing on the things that I could do the things that I, you know.

tawana williams: I couldn't focus on what I didn't have you know I had to focus on what I had.

tawana williams: And i'm you know my husband gives me great quotes and he gave me a quote about focus, he said, if you're not focusing on what you want.

tawana williams: Then what you don't want will automatically find you and I was like whoa you know that is powerful so focus is the key you got to focus on what you can do focus on what you.

tawana williams: are capable of doing because we're all capable of doing something greater than ourselves, and when I realized that you know what i'm doing, and all of the things that are.

tawana williams: Helping and helping people, it was bigger than me, you know when I realized that you know me being unarmed but dangerous me being an eagle without wings was so much bigger than Tawuana Williams, I said okay I got this you know so so focus is one of the major key keys.

tawana williams: In my life and in other people's lives, you know you gotta.

tawana williams: focus on it, you can either fall or or or focus, you know what i'm saying you got to really focus on what it is you want to do and move on that don't worry about the naysayers the doubters and the haters you have to get in and you know internally.

tawana williams: You know your daughter.

tawana williams: You know, for me, I had to get into myself, you know, looking at myself and saying tawanna you can do anything but fail and I believed that I could and every time I tried to do something that people told me I couldn't do, and once I did it, I was like oh my God. I am da bomb.

tawana williams: So.

Nadine Vogel: on that note, we need to go to a Short commercial.

Nadine Vogel: Commercial with she's the bomb I like.

tawana williams: The bomb.com

Nadine Vogel: So for our listeners stay tuned Norma I will be back with you amazing tawana Williams, in just a moment.

 

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: So tawana you know before we went to commercial break what I was hearing a lot of was the self talk right and mantras you know so many so many people.

Nadine Vogel: You know, talk about where they want to go where they want to be what they want to do in life, but they don't really commit to it, the way you do in terms of that that mantra that self talk, can you talk about that a little bit.

Tawana Williams: yeah absolutely i'm totally totally committed to serving others and helping others that's what motivates me, you know.

Tawana Williams: Because I see so many people that are slack that are lazy that complain about everything, and so I realized a long time ago that it was possible for me and if it's possible for me, without arms.

Tawana Williams: it's possible for you, with everything that you have, and one thing I found out, you know is that excuses don't hide.

Tawana Williams: They just reveal.

Tawana Williams: Who you really are and so you know my motto is and always will be, is that excuses or results you can't have both I.

Tawana Williams: Created results throughout my life on every level of my life i'm totally committed i'm sold out 99 and a half won't do anymore, for me, so I just.

Tawana Williams: You know i'm just that girl that just says, you know what i'm gonna do it as I show up early and I stay late to every event, you know and and that's how I have.

Tawana Williams: soared like an eagle you know it doesn't matter what it looks like for me, you know I just make it happen, I make a difference, because I realized that I am the hope coach and people need to see an example of hope and that's who I am.

Nadine Vogel: Okay, so i'm hearing about all this amazing all these amazing things that you've been doing wanna and how you've overcome, but let me ask with all the challenges that you've had in your life is there one or two that just really stand out is the most challenging and, if so, why.

Tawana Williams: yeah i'm my most challenging moment was motherhood, you know, taking care of a baby.

Tawana Williams: You know I came in there, with no instructions nor direction that was my figure it out moment you know and then today my middle name is to figure it out i'm tawana figure it out, William.

Tawana Williams: i'm just saying you know mother, it was hard, it was it was a challenge for me, but I did it, you know, and I would love for you know your your listeners to.

Tawana Williams: check out my YouTube channel unarmed but dangerous so that you can see how I took care of my daughter, with my feet I I put.

Tawana Williams: Her on the floor on a blanket I took care of her I fed her I bathed her I braided her hair, I mean I am the bomb.com i'm just saying I make.

Tawana Williams: It happen, I made a difference in my own life and I did some things that really literally amazed myself.

Tawana Williams: You know, because there are some things that I thought that I could not do, but once I got in that that mode, you know of.

Tawana Williams: figuring it out yeah the sky was the limit, you know I just kept going and I kept doing it and so today i'm a shaker and a mover and.

Tawana Williams: In all areas of my life i'm super i'm super excited but yeah motherhood and taking care of my daughter was.

Tawana Williams: The most one of the most challenging moments in my life and now she's 35 years old, and she has three boys i've got three grandsons and i'm loving life and loving being a momma, so it is awesome whoo.

Nadine Vogel: whoo yeah.

Nadine Vogel: Norma, you and I have talked about you know the challenges stresses, and you know, being a mom to a daughter with disabilities but I gotta tell you after after hearing tawana i'm thinking we got an easy baby, no, no, you know no excuses just resolve and what did you say tawana, you can't have both.

Tawana Williams: that's right.

NORMA STANLEY: And I said I actually love the story in the reality of.

NORMA STANLEY: The love between you and your husband that started when you were children, can you tell us a little bit about how that came about to do, he was your protector when you were younger tell us a little bit about that and I just think it's beautiful thing.

Tawana Williams: yeah my husband toby and I, we met as children, I was six and he was 12 when we met and I went to grandma, Rogers House every summer, because she lived in North Carolina.

Tawana Williams: And I grew up in DC and my mom and me and my three sisters would always go to go, Mr Rogers house for the summer, but I met toby.

Tawana Williams: I was six and he was 12 and the only thing he asked was what happened to your arms I said I was born without 'em, he was like oh Okay, and we just clicked immediately.

Tawana Williams: And he was like my guardian angel over the summer, each year, each summer, he would walk me to the store he would carry me he would be me he was just like a guardian angel over the years, and you know.

Tawana Williams: we've been friends over 50 years now.

Tawana Williams: And we're super excited this year Christmas Christmas Day will be celebrating 30 years of marriage.

Nadine Vogel: They.

Tawana Williams: Were super excited about life and love and our foundation of love and how he protects me and how he takes care of my every need, and I take care of him too so it's just a blessing it's an awesome Union yeah.

Nadine Vogel: wow that is a beautiful story Norma, thank you for bringing that up that's ah does my heart good right.

Nadine Vogel: So, since tawana you know my gosh there's so many other questions, I want to ask you in unarmed but dangerous and in the book.

Nadine Vogel: Is if our listeners, you know are listening to you and hearing about this give them one or two top reasons why they need to go and get that book immediately.

Tawana Williams: so that they can learn some things that they have not learned i'm just saying, and then you know just to see how blessed they really are because you know the story is really not about.

Tawana Williams: me being born without arms it's my life story and, as a matter of fact, you know the book unarmed but dangerous is about to be.

Tawana Williams: turned into a movie my debut movie eagle without wings no excuses, everyone can fly, and so, but unarmed but dangerous is really about you, seeing who you are because I have.

Tawana Williams: Questions at the end of each chapter that will compel you to get out of your heart.

Tawana Williams: You know, out of your head rather and get into your heart and and figure out what it is you want to do and what you're supposed to be doing, because I realized that we all have something great.

Tawana Williams: You know, in our lives, we all have we were born for greatness, and so, if we can figure out what it is we're supposed to do, then Bam you know it'll be history for you, too, so unarmed but dangerous it's a powerful tool to bring.

Tawana Williams: balance into your life and i'm super excited about it.

Nadine Vogel: I like that Bam for the bomb.

Nadine Vogel: So so tell us a little bit what when is the movie coming out how we get to see that.

Tawana Williams: Well, we don't have a projection time as far as a date yet, however, my producers are saying late 2021 will start pre production so we're super.

Tawana Williams: excited and um yeah we're excited about it and they're talking to the likes of netflix right now so we'll see nothing's set in stone, right now, however, we're doing what we're supposed to do and it's a challenge because we're still in the middle of covid.

Tawana Williams: Right, you know so it's a challenge but guess what challenges come to make us strong and so i'm just super excited about where we're going and.

Tawana Williams: All of the things that we're doing and I have two young girls young ladies that are going to portray me in different areas of my life or different.

Tawana Williams: ages in my life, rather, and they were also born without arms and they're going to do their thing they're going to portray me as as young tawana in different.

Tawana Williams: areas and scenarios in the film so it's going to be powerful but um You can check it out at eagle without wings dotcom and you'll be able to see where we are and.

Tawana Williams: I would love for you guys to stay in the loop by texting seven two seven two seven to.

Tawana Williams: team eagle te am EA GL E no spaces again text seven two seven two seven to team eagle team eagle we're super excited and you can stay in the loop and you'll know where we are and where we're going and how things are.

Tawana Williams: Moving forward but we're super excited about eagle without wings the movie, which is based on my book unarmed but dangerous and yeah we're excited.

Nadine Vogel: Well i'm excited as well, so I you know i'm not even sure it's fair to ask this question because you have done and continue to do so much, but i'm going to ask it anyway.

Nadine Vogel: so norma I know you want to ask this as well what's next, what are we doing movies down and what comes through after that.

Tawana Williams: Well what's next i've got a lot of things going on in my life so i'm after the movie i'm going to create.

Tawana Williams: My talk show motivation for the soul.

Tawana Williams: And not only talk show reality show you know I want to be able to show people that what you see on TV that's not my reality my reality is not fighting fussing and in all that foolishness that's not me and so i'm just super excited about that.

Tawana Williams: chapter in my life motivation for the soul reality show and at some point i'm going to create a drug rehabilitation Center in my own community, because when I was a drug addict we had to travel.

Tawana Williams: 100 some miles to get help, and so it was tough, for me, and so I realized that that's another thing that i'm going to do i'm going to create a drug, we have.

Tawana Williams: A drug rehabilitation Center in my hometown which is Wilson North Carolina and i'm super excited about helping others spite their addictions and their challenges and i'm just super excited about you know where i'm going and what God is doing in my life yeah.

Nadine Vogel: I think that's amazing norma I don't know about you, I feel exhausted.

NORMA STANLEY: But again It just shows all that you can accomplish when you put your mind to it and and and give yourself permission to soar and that's what she's done and she's definitely you know excited me about my own potential like hey I haven't done anywhere near.

NORMA STANLEY: I have stuff that's gotta get done.

NORMA STANLEY: Absolutely.

Nadine Vogel: Well, unfortunately, we are out of time for this episode, but Tawuana, this is not the last you're going to hear from us, we definitely need to keep talking.

0
Nadine Vogel: Anything that norma and I can.

00
Nadine Vogel: Do or this podcast for you to help you or our listeners, and what they could do to help you please let us know, because you are just the epitome of this show rate disabled lives matter.

Tawana Williams: wow.

Nadine Vogel: And what you are doing matters to a lot of people, and I am just grateful for you and everything that you've done so thank you for joining us today.

Tawana Williams: Thank you for allowing me to come and just you know I wanted to share also that you know i'm also an artist, I draw with my feet, you know i've got you go to Tawuana Williams dotcom that's t a w a, n a Williams dotcome you'll be able to see my artwork my.

Tawana Williams: other products, and you know see my books on on but dangerous they only everything is exclusively only at Tawaana Williams dotcom, so I am super excited about life, and thank you so much for having me and i'm grateful and humbled to serve Thank you.

Nadine Vogel: Well, thank you and don't forget the bomb.com Norma I going to be looking for.

That.

Tawana Williams: Better know you better know it.

Nadine Vogel: yeah.

Nadine Vogel: so norma another great episode yes.

NORMA STANLEY: Yes, absolutely she's awesome and so many awesome people coming i'm real excited about the next few weeks and all the ones we've done so far.

Nadine Vogel: Absolutely so for norma and myself another episode of disabled lives matter, we look forward to speaking with you next week, on another great episode and remember it's not just a podcast it's a movement bye bye everybody.

NORMA STANLEY:  be blessed.

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

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

S1-Ep22_Nic_Novicki

S1-Ep22_Nic_Novicki

July 29, 2021

Disabled Lives Matter

Season 1, Episode 22

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Nic Novicki 

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 everybody, this is Nadine Vogel coming to you with another episode of disabled lives matter podcast joining me is my partner in crime Norma.

 

NORMA STANLEY: Hi everybody.

 

Nadine Vogel: And we are joined today by someone I think, Nic, I think you nd I met maybe, four years ago now, five years ago we kind of knew of each other  but we met in person, Nic   novicki so Nick is a comedian and actor producer, I think you perform now on six seven continents that's right I go yeah you know I think I’m busy until I see what you're doing and then I’m like oh my God I’m exhausted let's just start with if we can talk to us about just life as an artist as a producer with a disability right because that doesn't take away from you being this amazing artist and producer but it adds to it so talk to us about that a little bit.

 

nic novicki: Yeah, yeah Well, first of all thanks so much for having me on and for those of you that don't know me I’m as you said, an actor comedian and producer. I’m also a little person so I’m three foot 10 and I would say in terms of my career as an artist and producer and having a disability they definitely intersect. But for me it's always about you know the art first you know, creating writing doing the stand-up producing creating my own content. I think part of that you know went side by side because of the fact that I am a little person, I am a person with a disability. So, to you know, have the kind of career, I wanted to have I learned pretty early in my career that I have to be in charge of all aspects learn how to write how to produce how to market how to get myself out there how to connect how to bring people together how to help other people, rather than just ask them for help. So, and then ultimately that's where you end up building a network and then from that network, you get hired but you hire other people, and then it just sort of just all goes you scratch my back I scratch yours, but it's this kind of beautiful community that I’ve you know worked with and I just feel honored to be a part of people with disabilities that are working comedians, singers, producers. You know, a step further, is eight and a half years ago I created the disability film challenge, which is a weekend film competition where you need to have somebody with a disability in front of or behind the camera. In 2017 I partnered with Easter seals southern California, the nation's largest disability services organization. Or now that Easter seals disability film challenge, we've had hundreds of films created from all over the world, so it's kind of another layer to that you know connection with artists with disabilities, because now it's not just me as a working artist with a disability, but I’m also somebody that in many instances ends up referring people and becomes a facilitator that helps others get jobs but.

 

Nadine Vogel: Well first of all I have to say thank you because the Easter seals disability film challenge is amazing, I have had the opportunity to actually be there in person. I know many of your award winners and oh my gosh I don't know what well, you should be aware of our foundations, Springboard foundation, we had a fundraiser and what we did we worked with a Carl right and what we did was we actually showed award winners from the film challenge.

 

nic novicki: That was awesome that was so cool.

 

Nadine Vogel: And it was it was a way for us to introduce your filmmakers your actors to a much, you know casting a much wider net, right, so people know about who they are, I think it's really important because, just how you open Nic I mean it just sounds like as someone with a disability, you have had to work that much harder. Do that much more to just get to that same playing field as others, would you say that's true.

 

nic novicki: To an extent, you know I think in some senses, as a person with a disability, to be honest, I got in the door really quick. Because I happened to be a little person, when I was you know, only a couple years in the acting I was on the sopranos so that doesn't happen for most people with disabilities. But with that being said I got on sopranos I got to work with all these other people and then all the sudden I was limited with the kind of roles that I was able to get because they were like well you know we have this kind of role for you it's a non-speaking thing and it's bad and I’m like well I’d rather be the romantic lead so I’m gonna write down to produce that and I’m going to be the gangster you know that's what I want to be so. That way, you know, so I think in some senses the doors can actually open up a quicker if you haven't disability. And so, if you're listening in and you're thinking well it's going to be harder for me with a disability, I actually disagree. Because right now I mean, even if you look at the sponsorship that we have for the Easter seals disability functions response by Sony pictures and you know, universal pictures and you know Viacom CBS and all these studios and networks and Warner media and adobe and they're all actively trying to include more people with disability, so I think now is like the best time to get your foot in the door, and I think whether you have a disability or not, or you don't have a disability it's a very difficult industry so you're gonna have to work hard. And you know, depending on what your disability is there may be other things that you're going to have to learn about in terms of what you need for accommodations. How, you know what your talent is honestly, you know as a little person I’m probably not going to be the best key grip and daring like heavy stuff. You know, you got to find your place in the industry and what you're passionate about. And what you are able to do the best and utilize your disability, because I also think is people with disabilities, we’re used to being kind of entrepreneurs in a certain sense. You know as a little person I can never reach things like public restroom sink; I have to move the trash can stand on it. So, the fact that I can do that in real time that's Problem Solving and that's what I needed and most you know TV sets film sets because they usually don't go 100% the way that you plan you know and location it rains. You know somebody gets sick; you know it's a very fluid process. So, if you have that ability to kind of roll with things, and you know you're better off, and so I think as people with disabilities, we bring a lot to productions with having that sort of you know, entrepreneurial spirit, but also just that willingness and experience and adapting.

 

NORMA STANLEY: Resourcefulness

 

Nadine Vogel: Yeah, absolutely. Do you think people know that readily though or is that something we have to educate.

 

nic novicki: You know, I think that people learn it through working you know, it's work gets your work, so a lot of times it's still the process of you know people being exposed to the talent within the disability community and so that's what I’m really proud of you know, we do screenings around the country and workshops and seminars and you know we're able to have not just you know referral but we're able to show films. So we're able to show the people doing the work not talking about what they want to do, but seeing that their work as a writer or their work as an actor and so I think the more that people are familiar with and get to know, then they see that talent and they see that work ethic and yeah that resourcefulness so you know it's a process, and I think the more and more we're able to be in the same room together doing in person workshops, obviously with the last year that's been a little difficult because nobody's been in the same room. At all been you know, in a zoom or you know Microsoft team’s meetup event so.

 

Nadine Vogel: So, I’m hearing that the doors are open more readily now. Do you think, though, you know, like you said early on about you want to be a romantic lead me like well no that's not the roles here for you. So, while the doors have opened, which is great, we need to start somewhere, do you think it is still limiting in terms of how people in the business view individuals with disabilities, relative to roles, whether in front of the camera or behind the camera.

 

nic novicki: I think to an extent, but I also kind of think that just in general, you know I know so many up and coming actors comedians writers that don't have disabilities, you know that are from other marginalized communities or just you know view quote unquote the stereotypical you know and it's very difficult, you still have to find your own path to an extent. You know, I think a lot of times people are expecting you know networks and studios and the Academy award winners to kind of be the person that just breaks everybody in when in reality it's you know from my experience it's been people that you're starting out with the end up hiring you, and then they you know you climb the ladder together. But I think sometimes you know the to be able to work with the High-Level Martin Scorsese’s the you know P, you know Farley brothers people that I’ve had the honor of working with. I don't think that would have been a possibility, had I not done a lot of other things, to get started, and so I think, really there was no such thing as the dslr camera or a smartphone when I started, I mean I’m getting old.

 

Nadine Vogel: You’re getting older to.

 

nic novicki: 20 years 20 years ago, you know I got started in 2001 you know. Doing stand up and doing things that but literally the technology wasn't there that's before YouTube that's before you know you would have to shoot something and put it on a little tape and then the tape to a competitor.

 

Nadine Vogel: You know you're a new daughter will never believe that when you tell her.

 

nic novicki: Yeah, and honestly, by the time she gets to be you know college age there's going to be new stuff that we don't even know about you know technology's always kind of just you know shaping in a way.

 

NORMA STANLEY:The jetsons you know with the flying cars.

 

Nadine Vogel: Oh I love that show.

 

nic novicki: I love the Jetsons. I love it. I mean it feels like we’re there though.

 

Nadine Vogel: It does. It definitely does and I think that that's important, I think technology is the great equalizer right and but, again, we have to know how to use it. And how to use it for us and not against us. You know we're talking with someone I don’t know if you know John Kemp, you know we were having a conversation with him, you know these companies say that are using technology in a discriminatory away when it comes to talent acquisition right. Using ei to make determinations and that doesn't work well for people with some disability types, so I think technology is fabulous but, again, we do need to know how and where to use it.

 

nic novicki: And I think even beyond that it's also just a balance of you know not everybody's going to be great at everything I’m not the most technical person I’m better at kind of putting people together, so I think you know it's about you know learning how to kind of build your network, you know and that's the way that somebody's going to be better with certain technology. With interpersonal skills somebody who's going to be smarter or better writer, you know somebody's going to be the comedy person somebody be the straight man person you're like acting you know you got to have Laurel and hardy you know or the Alec.

 

Nadine Vogel: No, I agree completely, and you know it's interesting because there's so much to think about and so much to consider, and I think you touched on earlier, you know. I’ve talked to people with disabilities to say you know they're tired of always being the ones who must educate and train, and you know tell the companies what to do and how to do it, but at the end of the day, if not us then who. Right and who's going to tell the story correctly right in a way, because I’ve seen many organizations try but not succeed. And sometimes it's just because they haven't really engaged with people with disabilities to really understand exactly what's needed You know.

 

NORMA STANLEY: It’s the same thing with the African American Community and companies who don't really have like an advertising, and they don't have people making decisions who understand the Community and they're putting out ads that just do not, they don’t connect. They don’t know the messaging because it's not their experience.

 

Nadine Vogel: Right. Absolutely.

 

NORMA STANLEY: So those kinds of things you must have the people limiting the lived experiences to talk about it.

 

Nadine Vogel: Absolutely, and we must go to commercial break when we come back Nic I would love to touch on that this is a big discussion around people who do not have disabilities playing roles of disabled individuals. So, let's go to commercial break, because I know that's a hot topic important one, so I think we should go to commercial break first and we come back let's touch on that, so everybody don't go anywhere we'll be right back.

 

COMMERICAL BREAK:

 

Nadine Vogel: Okay, so this is Nadine Vogel back at you with disabled lives matter podcast with my co-host Norma Stanley and today's guest Nick Novicki. So Nic before we went to commercial, I brought up a topic that I know is always controversial but so important to address, which is this issue of individuals who do not have a disability visible or invisible playing roles of disabled individuals. Can you talk to us about that.

 

nic novicki: Yes, during the whole commercial break I was screaming. So I mean this is it's a controversial topic, but look, you know, for me, as my goal and kind of the mission of what I do with the film challenge and in my work it's about creating solutions for future things. It's about putting the keys in people's hands themselves to tell their own stories so that's generally what I focus more on I focus on you know the bigger problem, which is how do we get more people to be further in their career. You know I think sometimes as a whole, we do focus on that a lot and look, we want an authentic portrayal and that's you know a lot of that too is not just in front of the camera that's behind the camera. And that's about who's telling the story who's writing it who have you consulted with but certainly. You know I always feel personally that the most authentic performance is when you have somebody with that disability portrayed that is that character. But, but again I think sometimes it's interesting that this ends up being in the press a lot, you see a lot of articles and they want to point it we've got to fix this one and it's like one You know film or one TV show when it's like we have all these networks, all these studios all this talent out there, you know I think sometimes that we need to focus on uplifting those that are doing it right. More so than you know attacking those they're doing it wrong. But I don't fault anybody for that frustration, and you know as a consumer myself I would like to see a story of a little person portrayed by somebody there's a little person. You know me, I think you know it's about authenticity, so I think the other kind of problem is, I think now audiences with them with and without disabilities are getting smarter and they're starting to see oh well, I don't know that's just doesn't feel like that's coming from a place of truth or authentic, so I think you know, really that's something to think about. And then, on the other side from our studio network independent film production side you need to think about that huge 61 million Americans that have some form of disability. One in four roughly according to the CDC. And that translates around the world, you know, a huge demographic of people with disabilities. So we haven't been marketed to enough. You know, so I mean, I think you know, think about you know all those attack ads but think about all the uplifting ads and the like, embracing you can get you know, and we've been honored to have gotten you know a lot of press with the film challenge you know, last year, there was a New York Times article that. featured me talked about the challenge Forbes a couple times CNN variety, we’ve been in the Hollywood reporter. You know, during our awareness campaign people have been picked up on, you know people magazine and all these other things, so the community loves embracing these positive stories. But you know if you're thinking about you know hiring somebody that doesn't have a disability and one of these roles. You have to know what you're getting into to that there's going to be people that are not going to be quiet online and it's a hot topic, and you know it stems to from there has been a lack of access, you know, historically, for a lot of people with disabilities and it's not like hey this wheelchair user with cerebral palsy is getting you know 25 auditions a week. So, when a big role comes or for somebody who's blind or deaf or little person or would you name it autism any fill in the blank disability there's a lot of talent out there with disability and I think you know there's more and more opportunities that are coming now where the casting society of America has been unbelievable and supporting the film challenge and the disability community as a whole and they're reaching out on a weekly basis with roles and trying to authentically cast so there's a lot of people doing a lot of great work and I just want to point that out, you know that there's so much collective.

 

Nadine Vogel: Yeah, I think you're right the negative stuff is what you know sticks and is out there you know, but we do hear things like well you know we need to watch the box office right and the revenue, but you know there could be a major box office hit with an individual with a disability if we give them the chance, so we find out their just as talented as the other lead that you had right. So, it's tough and Norma you know I mean, in some ways, now I’m going to get really controversial, but in some ways, you know think back all those years ago to blackface.

 

NORMA STANLEY: Exactly I was thinking the same thing you know, and I didn't realize what was really going on. And that was definitely you know not something that we would ever do today or anybody who has any sense would do today and that was something that they thought was somehow appropriate way back then. But again, who are they listening to they weren't listening to anybody who really knew it was inappropriate anywhere.

 

Nadine Vogel: And now look, I mean look at all the roles, you know award winners, who are from the black and brown Community right but another I you know I seem to be in a controversial mood this afternoon. Another topic I’d love to hear from you on is this issue of movies that has been out where the person with the disability, you know gives up on life. They would rather just you know die and not live, and it is all these questions that come out about quality of life. And I’d love to hear what you think about that, because there was a study just recently, not the entertainment community, but in the medical community. Where doctors admitted that they actually felt that people with disabilities had lesser quality of life and therefore it impacted their diagnoses their recommendations for treatment things like that so I’m just curious from an entertainment industry standpoint, what are your thoughts.

 

nic novicki: Well, you know I think a lot of times you're hearing stories that were not written by people with disabilities, you know you're not going to hear you know somebody who's a little person talking from that standpoint of I’d like to you know get rid of my child because they're a little person or something so it's like I think a lot of times it's you know it all goes back to authenticity. And yeah, just saying you're going to end your life because of your disability, I mean that's an awful portrayal of somebody with a disability. I think that it's about telling our own stories, you know it all boils down to who's writing this, who's it for. Because generally that's not for the disability community and generally that's not written by the disability Community if you're talking about my life isn't, yeah.

 

NORMA STANLEY: They both pass the disability Community it's from the perspective of you know, whoever it is this writing it and whoever it is so who's even doing this study in that they're assuming about a community as to what think can’t be any good, because of whatever the situation is. And so, prescribing whatever they're prescribing and diagnose what admitted diagnosing and not giving that community an opportunity to decide for themselves.

 

Nadine Vogel: And you know, look if someone would ask me, you know 35 years ago, you know if you had a child with a disability, who couldn't do this this this this and this you know what would you do and I’m almost 100% sure that what my answer would have been then not having that experience would have been very different than what it was after my girls were born and what it is today. So Nic I think it goes back to what you were saying about authenticity. And experience right and bringing that to the forefront, and I think that certainly would be Easter seals disability film challenge you've done that. So, my next question and no pressure here. Well maybe some pressure. Where does the film challenge go next right, what's next on the horizon, maybe the next you know, three to five years for the challenge.

 

nic novicki: Well we've grown every year, so every year we've had more films more partnerships more screenings. We get success stories every week so honestly, it's grown more than when I came up with this idea eight and a half years ago, I never would have thought is going to change people's lives it's people would literally do what they wanted to do. Because of you know, entering this and that they would build lifelong you know mentor ships and get to work with Oscar winners and work multiple years in another country from you know, taking part in the challenge so it's the Community is building. And so, I think you know I'm optimistic that we're going to continue to grow. I’d love to see you know we already have projects that are being turned into feature films and TV shows in development, so I’d love to see one of those you know go full force into in the movie theaters you know into on TV. You know, documentaries are being made from last year's every year to different genre so, which is also kind of cool so it's not the same type of film. The film's change in a different block every year, so last year's documentaries are being turned into features, right now, some of those. Some you know films from five years ago, six years ago, are still in development and really close and people are winning grants and you know getting jobs, so what I’d like to see is the continual growth in that it's you know, creating opportunities for people with disabilities in front of him behind the camera and ultimately building people's networks and giving them a chance to screen to be proud of their art and themselves and also families, people with disabilities have just so much pride. The amount of pride from the communities, you know, we have an awareness campaign where it's a 10 day campaign where people are trying to get as many likes views and shares for their films, but they're bringing in their local network their local news their you know their families work everybody and so they're sharing and getting kicked off of Twitter and Facebook, because you know getting themselves out there, so much so. That’s just continuing to build, and I want to see that you know happened more, but you know even going back to what you were talking about before. You know all this space it's interesting because you know I’ve met you know parents that are you finding out that their child is going to be a little person and they're so scared about certain things where I’m like I don't even think about what you're like concerned about like that you know as a 38-year-old man like. I you know my wife's a little person, you know we don't know if our daughter is a little person or have a type actually because of my kind of dwarfism we won't know for a couple of years, but that's not even something where I’m like scared oh it's you know it's just that a lot of it is to just coming to terms with look it's going to be different, but accepting the situation. Because in reality many times, I think from a medical standpoint and just in general, from societal standpoint people really get nervous and it's just a lot of fear I think that kind of drives why they want to change things I don't want to have this because what will others think or they won't be able to live a normal life when reality is yeah, we will be able to live in normal life and, yes, we're going to do everything. Some things may be done a little differently, but you're still going to be able to you know, do whatever you want to do, including in the arts and so going back to what the film challenge what I hope is over the next three to five years. You know, we continue to see just great stories they've never been seen before, to which is something I’m really proud of with these films. Where we have like love stories of people with down syndrome and you know they never talked about having down syndrome or things that are a part of their downstream from it's just them, you know living their lives or you know, being a gangster being the you know romantic lead yeah just like everybody else, and so that's what I want to see more and more of. And because honestly and I think that's where we're going to see a breakout hit come from, because you know generally TV shows and movies. You know they haven't you haven't seen some of these stores or haven't seen these kinds of portrayals. So, the fact that we can do it and it's all volunteer driven, and you can use Union talent, so we've had Oscar winners take part in the film challenge. I think that we're going to see a real breakout calm and I encourage everybody to go to our YouTube channel and check out all the films, we have hundreds of films, this year we had 93 films shot from all over the world, including India, Australia, the Netherlands, Italy, Ireland UK Canada. You know so it's all kinds of different interpretations. Of what disability is and many times, never addressing disability you're just seeing it. From a different accent or different way of talking or looking.

 

Nadine Vogel: Well, you know, Nick I always say it's not about what happens in life it's about what to do with it, that the counts and certainly you have done and continue to do amazing things and I just I can't wait for your daughter who was only five weeks old to grow up what an amazing dad she has and all the info that you are doing, I can't wait to see over the next three to five years how the film challenge grows. Because I have watched it and you’re right it's grown tremendously. And you know look you illustrate better than anyone disabled lives matter that's what this is about, first and foremost so Norma I don't have any other things you want to add but.

 

NORMA STANLEY: One question. Drop that is one of my favorite shows, how did you get to play in that I thought I saw every episode remember I didn't know it was you.

 

Nic Novicki:  Yeah yeah yeah well what was funny was I played like a kid lawyer. So, there was a whole episode about how my mom, it was funny because like this is the how Hollywood works for those of you that don't know, I was almost 30 years old, and I was playing like a kid yeah and they just kind of you know and shaved and I kind of got that kind of face. Without the beard you know if I shaved and. But this is, you know from 10 years ago or. Nine years ago, and so, basically, it was a whole episode, where I think it was called dream big or something I can't remember the name what it was it was it was all about me I kind of be in like a kid lawyer and I was like a teenager. And it was funny because one of the leads, you know we're talking, I was like yeah you know so when I was on the sopranos and they're like the sopranos how old, are you waiting to you're supposed to be like a teenager that's been off for six years.

 

NORMA STANLEY: Yeah, yeah, no doubt. I’ll have to go back and check that episode out.

 

nic novicki: Yeah yeah it was it was such a fun show to work on and josh Berman, the creator of that show he's just an unbelievable guy and really kind of created an awesome role for me and he's been supportive beyond drop dead diva he's you know, creating and working on all these other awesome shows.

 

Nadine Vogel: Great well this was just so amazing Nic Thank you so much for your time today and for our listeners, I know you have enjoyed this as much as Norma and I did we have big smiles on our faces although you can’t see us.

 

nic novicki: If you guys want to know more about what I’m doing follow me online at Nic novicki you could go at this ability film challenge or disability, some challenge COM to learn more about some of our upcoming screenings workshops, seminars.

 

 

Nadine Vogel: Excellent and, yes, you all should follow him for sure. So, with that this is Nadine Vogel another successful episode of disabled lives matter Norma Stanley my co-host.

 

NORMA STANLEY: Another great show.

 

Nadine Vogel: And Nic Novicki again Nic thank you so much, we will definitely want to have you back and hear what you're doing.

 

nic novicki: Arlight well, thanks so much for having me.

 

Nadine Vogel: Thanks, bye-bye.

 

NORMA STANLEY: Be blessed everybody.

 

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S1-Ep21_Jane_Fernandes

S1-Ep21_Jane_Fernandes

July 22, 2021

Disabled Lives Matter

Season 1, Episode 21

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Jane Fernandez

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: Hi I’m Nadine Vogel and I want to welcome you to today's podcast of disabled lives matter, this is not just a podcast, this is a movement and joining me in this incredible movement is my co-host, Norma Stanley.

 

NORMA STANLEY: Hi everybody.

 

Nadine Vogel: Hey Norma how are you.

 

NORMA STANLEY: I’m doing great how are you guys doing today.

 

Nadine Vogel: We are good, I am really, good because I get to join you in interviewing an old friend of mine Jane Fernandez. So, Jane is the President of Guilford college and she's the ninth President and the first deaf woman to lead an American college or university, so she totally exemplifies this issue of disabled lives matter so Jane welcome to the show.

 

Jane Fernandes: Thank you I’m excited to be here, look forward to talking with you.

 

Nadine Vogel: Absolutely, so tell us, I mean my gosh obviously there's a lot of history between you know you growing up going to college and becoming a college President. So, talk to us a little bit about that path that journey.

 

Jane Fernandes: Well, I grew up as a deaf child, and I was fortunate because I had a deaf mother who already know how to work with a deaf baby or to tell yourself that was a benefit that helped, I was very much many streamed into this world not aware of deaf world I’ve been painting my family.

 

Nadine Vogel: Got it.

 

Jane Fernandes: Went to public schools and I had support at home to really teach and really learn what's going on in school. So, I committed a lot of my time to learn how to speak read and write English. Large amount of time. And eventually, it did come to fruition. I always liked public school. I did I did fairly well, I have some interesting stories I could tell you about my school. Before I go into my career.

 

NORMA STANLEY: Let's hear it.

 

Jane Fernandes: Okay well I have a couple of stories. They show things about how the worlds not really made for deaf people. And we are always negotiatinh with the hearing world about who we are and what we're capable of.

 

NORMA STANLEY: Yes.

 

Jane Fernandes: The world sometimes put assumptions on us and generally those assumptions hold us to a lower expectation, my feeling.

 

Nadine Vogel: Yeah, I agree.

 

Jane Fernandes: They have limits. With something like speed limits. Speed limits try to have a strike safely you must slow down and follow us on that journey keeps us safe, those are good ones. But I feel that the world has put a lot of these limits on me as a deaf person on deaf people in general where they underestimate what it means to be done. So anyway, for example, I went to kindergarten in a public school near my home. I’d rather from walk to school. I was excited because I’ve never saw so many kids before. They went into the class and a few days in I got excited because we all got pencils and we were practicing handwriting. They were thick pencils we used those a long time ago. And then I saw oh they have a pencil sharpener over there on the wall and I saw people go over there, so oh so I don't know what one point in the day, I decided I’m going to go over there now, I want to sharpen my pencil. And when I turned around everyone in the class was laughing. Maybe I don't know, maybe they were just laughing but I felt like they were making fun of me I didn’t know what's going on, and I saw the teacher was stern, sit down. And I got so overwhelmed I don't know what happened exactly so that I decided to bolt I left I ran out of the class I ran out of the school, I ran home. I was crying because I didn't know what I did wrong. Everyone else sharpened the pencil but I went at the wrong time, or something. My mother, she had to calm me down and later she walked me back to school and she made it clear that that was my school. Even though it didn't feel like it was my school she told me this is your school, and you have to make it your school. In her mind you know, she knew other children all went to deaf schools separate schools for deaf students, which are fine they're good but for a decision for me, was to go to a public school right. And that had to be mine but then after that my mother got more involved in school so she helped the school understand somethings about how to do better with someone like me.

 

Nadine Vogel: Right, well she wanted you to focus on the hearing world, more so than the deaf world, correct.

 

Jane Fernandes: She did yes. I’ll talk more about that. But yes she did.

 

Nadine Vogel: Oh okay.

 

Jane Fernandes: Yes, she wanted us to focus on the hearing world. So another example, just because you brought that up. When it's short time later, maybe one or two years later we practiced different things about how to do things in the world. So she sent me to a local drugstore. I could walk home. She gave me money and she told me what to buy, I forgot.  But the goal was that I would go in and buy it get the change and come home and then no one would know I was deaf. So she taught me more to do have act, I went in the store, which person in the store by the way they look for how about you most likely to help me. And which probably wouldn’t. Okay, so anyway, I did I went, and I bought the thing I got the change I got the bag and I walked home crowd around them didn't know. But so, my mother was helping. But when I look back on it now, I wonder what was in my mind that I was happy to be something, or I appeared to be something that I wasn't. And I felt proud to be hearing or act as if I’m hearing and not so proud to be deaf. I had to hide the cover. But yes, my mother did want me to know about the hearing world she did and I'm not sorry about that. Okay I’m glad I did that, at the same time, I have a lot to do, on the other side when I realized what I had missed, and what I never knew about deaf people. That was a big loss, I had to make up, but one thing I will say in my high school in Worcester mass door high school. I went to highschool and I had some close friends. Not huge number but some close ones, and again mostly succeeded if I didn't really make everyone, I can hear you I don't know what you're sad or just go along keep everything. But one time, one of my friends was an African American girl. I’m a white girl, she was an African American girl and she's way ahead of me I remember I just followed along. We were both in the same English class. and generally, I always thought it. always got a or a minus or something generally I always got an A or -A and generally she got a B or C, generally. Well for whatever reason, we just decided to swap papers, so I wrote my paper she wrote her paper buy we swapped we put each other’s name and we sent it inn. And then the paper that she wrote, I it had my handwriting it looked like mine, I still don't match. She still got to a B or B- or something.

 

NORMA STANLEY: That’s interesting.

 

Jane Fernandes: That’s when I started to get an inkling of things going on, I didn't yet apply to me. But I understood that there are assumptions being made about people, based on attributes that we’re born with attributes human attributes and assumptions are being made about what that means. Actually, our principal. Dr john he was an African American man. He almost blew his top. We just told him what we did. And you know nowadays it would never happen, because now, they have anonymous scraping all the school they don’t see them, they just grade the paper he's very upset that what we did, and he tried to explain that, if we have some mode if about clothing something about race which really made me my friend did, but I didn’t. I didn’t have a motive that it was the wrong way to go about it. Research and go to college get a degree figure out how to work on this problem. But anyway, so that’s the reverse. Get that A that I always got it was assuming I couldn’t do something so much pity for me as a deaf person.

 

Nadine Vogel: Right.

 

Jane Fernandes: I must not be able to do it. So even then, I wasn’t doing what I was capable of doing. Whatever I was getting was based on pity and my friends with based on race. Hearing things about hearing privilege and white privilege something like that.

 

Nadine Vogel: Well, so I have a question, do you think that that plays into or has played into what you've created at the College, which is the edge initiatives, my understanding is the edge initiatives all but equity and things like that so how does that all relate.

 

Jane Fernandes: It all does relate, yes, because in the end of the day, my life is about giving access to education. Good quality education to everyone who wants to receive it. And Guilford college is a very diverse campus mixed population of students who have learning disabilities a significant population of students on the autism spectrum and wide variety of races and ethnicities. Most recently 49% of the first year class are from racial and ethnic underrepresented racial and ethnic groups. So yes, at the edge a lot of the ad was founded in equity for all students, we wanted to create more connection between the world and the classroom.

 

Nadine Vogel: How do you do that?

 

Jane Fernandes: So, one way we did, that is to create a calendar we created a three-week term, and we gave everyone in school access to a three week experience off campus. And in the past, some people might have had bad experience, but only if they could afford to pay or they could afford the time or somehow they could manage it. But most of the students couldn't afford the time or the money so they never did it. This way, we may financial resources available to everyone. And they all have experiences off campus and may not that big them an edge when they went back to class because they understood what they were learning. Liberal arts courses, for they could see the direct connection between liberal arts and real world. And with so much speculation about college degree a lot the parents don't even believe it's worth the investment that's good evidence to show that it is really worth the investment.

 

Nadine Vogel: Well on that note I, we do need to go to commercial break, but I know Norma that you have some burning questions so as soon as we come back, I’m going to turn it over to you to ask so stay tuned for commercial break.

 

COMMERCIAL BREAK:

 

Nadine Vogel: Hi this is Nadine Vogel joined by Norma Stanley my co-host on today's episode of disabled lives matter. Again, more than just a podcast, it is a movement, and let me just tell you, the world is being moved right now by Jane Fernandez. The person that we are interviewing, who is the President of Guilford college. So Norma I think you had some questions.

 

NORMA STANLEY: Well yeah, I mean I just love what you shared about the childhood, and I was just wondering, you know when you became an adult did you actually find it was part of your purpose to become an activist for the Deaf community. As you know, as you were pursuing becoming a building into the Education Forum and becoming a president like what you are today at Guilford college is that something that came quite a bit you wanted to become, and you know do for the Community decides what you want to do for yourself.

 

Jane Fernandes: Well, it started, because what I was doing for myself, for example, the first time I learned about deaf people finally the first time I learned that deaf people most deaf people sign all day it’s a visual gestural language made for them, I was in graduate school at the University of Iowa. I went to deaf clubs and I learned that I’m deaf like them, but really we're so different. And you know that we both can't hear, but we have different ways of working in our world with that. But I became fascinated with that and my understanding that really bothered with my language, if only I knew that I would have learned growing up, maybe I wouldn't have been, so I committed to activism on behalf of deaf people. Because I thought, a little bit like I was denied. The world denied me knowledge of a language that I should have known or I denied myself I don't know what, but when I learned that turned everything around and the deaf community as a whole.

 

NORMA STANLEY: That’s important. We were interviewing a woman this morning from the network call sign one news and there a forum or station that dedicated to making sure that the deaf community is included in the news cycle, every day, you know. Journalism and you know she was sharing how that is certainly a critical component of making sure that they get the same news, and the same way that they understand it, the way they need to hear it and communicate it and that wasn't happening, and so you know, all this innovative, you know programming that like that like Nadine was talking about edge that you guys initiative that you're working with and it takes people like us to make that happen because not everybody sees the opportunity to change or to help make change others and that's what I believe that you're trying to do with you know the programs that you're implementing.

 

Nadine Vogel: And Jane we're going to introduce you to the CEO. The founder and CEO of sign one news I mean the entire news station is just sign, nothing is conveyed verbally, so I mentioned you to her and I promised I was going to mention her to you. And I’m going to connect you because I think it’s important.

 

NORMA STANLEY: Absolutely.

 

Nadine Vogel: So, you know, I have a question oh go ahead, oh go ahead Jane. Ok, I have a question about you know fast forward and thinking back to your mom and everything that she did to instill this this work ethic for you educationally and to work and fight for you at a time where we did not have the laws that we have today. Whether in the education system idea or the Ada. So, as we fast forward and look at today, you know I would love to get your perspective. on how that has changed. How it's changed for not only the student or the adult with disabilities in college or working, but maybe also how you think it's changed for parents.

 

Jane Fernandes: It's changed a lot. I don't know, but I feel in my lifetime things for deaf people have changed profoundly. I don't know we have a sense; I have a sense that I can get a new job I’m qualified for If I’m qualified no one can say I can't have a job because I’m done right and that wasn't the case when I was 20 years old. When I was 20 years old, I was full of anxiety that I’ve would never been hired, and we were doing anything right everyone in the. room all the time because I couldn't hear it's completely change. For parents there’s alot more information now and it's a lot more neutral it's more about the parents having all the information may need to have to decide about what they want to do for their children with disabilities. Completely changed and technology of the big change as well. Because that's our communication method last level playing field exist, yes, deaf people who can read and write English, but even that's not where you are now boom. The whole time or chapter on the zoom everything about it is about access and equality.

 

Nadine Vogel: Right right so in the years that you have been a college President obviously people go to college to get themselves ready to become employed. So, what changes have you seen or do you still have concerns that you see about your students as they graduate getting employment.

 

Jane Fernandes: That is the number one priority of the students for today and for their families there's an incredible amount of pressure on the student and on college, especially on the College to show that the education we provide is practical enough to be useful in career choices. That's why the edge combines the real world, and the clash makes it clear why students go in the oil and experience, jobs and then come back and go to class metaphorically, or to man, why bed go to college. At one time, we have more of a war about death babies yeah, they would be all manual. or sun and it would never mix the two things. Spain and have that will have an implanted in them have a cochlear implant or maybe they won't. Now I think it's more about our parents knowing all the information about all the options and may decide that's best for their child and later the child can make their own decision for some of the options there. That they can always do something else if they if they wish, I don't think it will happen again remind I hope never again that someone like myself could not even know that sign language existed. And at 23 and must start. But I don't have any regrets at all worked up on.

 

Nadine Vogel: Right. So do you find that students do really change and switch from perhaps how they were brought up either to use sign language or not. And that through their college and life experience that you're bringing that they choose to switch for some reason or change it up in some way.

 

Jane Fernandes: Yes. always happen, I mean I switched from not knowing sign language. So, for years I find I’m not been good my course for years and then I came back to I can do all these things are all part of one is not better than the other doesn’t make me more deaf or less deaf. Everything is probably and I do what I want with them.

 

Nadine Vogel: Well, and I think that's kind of although quite different, I do think it has some similarity to a family that's bilingual or trilingual. In that they're teaching the child multiple languages and the child will determine which one becomes their primary language or that they could use all of them at some point. But actually, on that note I do want to ask the question that we have been debating and other conversations, which is why is sign language not offered at least generally speaking in undergrad you know in high school and junior high school they offer Spanish and French and why isn't sign language, a core offering for language I don't understand.

 

Jane Fernandes: So that is my dream. I wish, I don't know how to do it, maybe the US Department of Education would pass a bill that everyone in every public school in the US alone sign language and culture say grade 3, grade 8, grade 12. Some people will not have any money not really like it up, they will be hurt by take my beloved son with our terms with them yeah. And, but everyone would know everyone would not have to go oh, she’s deaf. Everyone wants to be a community so public schools should teach our students about that, and I often think about that. We teach French, we teach German, those aren’t American language. I don't mean to be America is the best but that's our people were speaking time right people and our times speaking an American language and have an American culture that's different than the majority and, most of us don't even know they’re there. So, to have the Community dedicated to being quality and individualism I wish that we would teach more people about that why it doesn't happen I’m not sure I’m not sure why that doesn't happen.

 

Nadine Vogel: Because I think.

 

Jane Fernandes: Deaf people I don't know the low incidence I don't know.

 

Nadine Vogel: The fact that it doesn't happen to me is bothersome because it undermines what we're saying that disabled lives matter. Right, no matter what the disability, because if you if you know, to me, if someone is not willing to learn how to communicate. Then they don't think you matter then they don't think you matter enough to do that and that's bothersome you know at springboard at my company as an example, our business cards my business cards are brail. And we get asked all the time, oh, you know you must have someone who works in the organization, who needs reads brail. I said no, but I never know who I’m going to meet. That doesn't need that right, it goes back to your education is it's about equity and it's about equality, and when I think people don't understand is equality to me anyway, is not about treating everyone the same. it's about giving everyone the same ability to be successful right, and I know you shaking your head, I mean, so I guess you agree with that.

 

Jane Fernandes: Yeah, I agree with that completely. It's not about on everyone speaking English, so does all deaf people speak English because that's what we speak here right that we have a language that the American sign language. That helps us have access to information and knowledge, and we have ways that we can use that to gain equal role in society and be engaged citizen, as everyone had the right to be and should be.

 

Nadine Vogel: So, I know we're about out of time, but I do have one more question and I think normal, you may have as well, which is. How have you or have you been able to use your position with your colleagues, Presidents of other colleges and universities to kind of come around. And to understand the importance of people with disabilities at their schools and for mainstreaming them within their universities have you been able to do that.

 

Jane Fernandes: Well, I’ve done it on a small-scale small scale, because the work that Guilford does with students who have learning disabilities and on the autism spectrum that is probably unknown not very well known, but very, very astonishing. Basically, my students are just being themselves we are not about changing anything, and we accept who they are. But we provide them support and many of them are change, they transform while they're at the school and very successful after school. But it's sort of a I don't know it's a personal or a deeply help out and it's not about making and it's not like you're making a movement right.

 

Nadine Vogel: Right.

 

Jane Fernandes: You’re good at the movement. I’m so onboard with your movement.

 

Nadine Vogel: So important oh my gosh. Norma, I know we’re running out of time but is there anything else you’d like to ask.

 

NORMA STANLEY: I was just wondering; you know if there are any corporations that may be working with some of the graduates of your school that you might want to you know anyone that you see they're really trying to include the deaf community as a look for hires, are there any companies, you might want to recognize or you know mention or you know do you get any of that attention from companies.

 

Jane Fernandes: I could, I have to think about that, but yes sure I can think of some corporations and companies in Greensboro North Carolina with whom I work that have been helpful in the employment. I'm on the board of industries for the Blind solutions and Winston Salem. And we work with Guilford, and I work together to provide education for blind people at the IFP and we are developing a program started with just a class one class and one of my other classes class the last day of class on her own sort of a diploma. I will now we're talking about having the students come to your admin role as. The constraints that awesome yeah. I think I could get back to you with some of the corporations.

 

Nadine Vogel: Right that's really important well Jane Thank you so very much. Unfortunately we are out of time this half hour I just flew. But we absolutely cannot let so much time pass this time until we speak again, I definitely am going to introduce you to Sign one TV and talk to you more about some other opportunities, so thank you, we wish you all the best. Keep going with Guilford doing great work and we will talk soon, this is Nadine Vogel signing off along with my co-host my partner in crime. Norma Stanley on Disabled Lives Matter.

 

NORMA STANLEY: Be Blessed.

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