WAV Conversion with Cara Elizabeth Yar Khan

Episode 46 February 28, 2021 00:40:08
WAV Conversion with Cara Elizabeth Yar Khan
Freewheelin with Carden
WAV Conversion with Cara Elizabeth Yar Khan
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Show Notes

Wheelchair Accessible Van Conversion with Cara Elizabeth Yar Khan hosted by Carden Wyckoff

Transcript https://rb.gy/pcolzy

Who is Cara Yar Khan?

Cara Elizabeth Yar Khan is an entrepreneurial humanitarian and disability advocate who has had an invigorating career, spanning ten countries, so far. In 2001, Cara embarked on her international travels to work in Ecuador with the United Nations World Food Programme where she served for two years as a Fundraising and Communications Officer. Her many years with the United Nations Children's Fund (UNICEF) started in Private Sector Partnerships. When she also took on the role of disability focal point during the Earthquake Emergency Recovery Operation in Haiti it launched a successful public speaking career. Cara has a masters degree from Johns Hopkins University, School of Advanced International Studies which she pursued in Italy. She is gifted in languages, fluent in Spanish, conversational in basic Mandarin Chinese and has working knowledge of French and Portuguese. At the age of 30, Cara was diagnosed with a rare muscle wasting disease, called HIBM that leads to quadriplegia. Since then she has used her platform to break glass ceilings. As part of her advocacy work, she is also producing a documentary film with the legendary Sam Pollard and is writing her first memoir with Carol Mann Agency. Today Cara lives in Smyrna, GA with her husband, U.S. Army SSG. (Ret.) John Masters and Southern cat, Bubba and kitten Moon.

Resources

https://www.carayarkhan.com/
https://www.hibmthefilm.com/
https://www.linkedin.com/in/cara-e-yar-khan/
https://www.facebook.com/cara.e.yarkhan/
https://www.instagram.com/cara_yarkhan/

Follow Carden on Instagram @freewheelinwithcarden
Find Carden everywhere

Special thanks to my producer Jonathan Raz on Fiverr.com

Use referral code 'Carden' when downloading iAccessLife mobile app.

 

 

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Episode Transcript

Speaker 1 00:00:04 Hey, and welcome to freewill with carton podcast. I'm your host Carter Wyclef wheelchair warrior and disability advocate based in Atlanta, Georgia. On this podcast, we share stories of people's very disabilities and we believe in creating an accessible world strengthened by supportive allies to build inclusion and belonging. And if you like what you hear on this episode today, please rate, review and follow this podcast and share it with a friend. You can DM me on Instagram at freewill and with carton. If you want to come on the show or you have some comments that you'd love to share with me, I'm giving a shout out to my friends at I access by it's a mobile app that raised and reviews places on the built environment to break down barriers and transparency on the bathrooms, interior parking, and any time that you go into a new place, you can find the mobile app on Google play and Apple app store use the referral code carton when signing up for the mobile app. Speaker 1 00:01:01 I access life born in India and raised in Canada and a multi-ethnic family of Indian Muslim, British Anglican, and Chinese Buddhist immigrants. Carra Elizabeth Garcon is an entrepreneurial, humanitarian and disability advocate who has had an invigorating career spanning 10 countries in 2001 car embarked on her international travels to work in Ecuador with the United nations world food program, where she served for two years as a fundraising and communications officer her many years with United nations children fund also known as UNICEF started in private sector partnerships. When she also took on the role of disability focal point during the earthquake emergency recovery operation and Haiti, it launched a successful public speaking career. Kara has a master's degree from Johns Hopkins university school of advanced international studies, which she pursued in Italy. She is gifted in many languages, fluent in Spanish, conversational and basic Mandarin Chinese, and has working knowledge of French and Portuguese. Speaker 1 00:02:10 At the age of 30. Carl was diagnosed with a rare muscle wasting disease called H I B M. That leads to quadriplegia since then she has used her platform to break glass ceilings. As part of our advocacy work. She has also produced a documentary film with the legendary Sam Pollard and is writing her first memoir with Carol Mann agency today. Carl lives in Smyrna, Georgia with her husband and us army SSG. Who's retired John masters and Southern cat, Bubba and kitten on the episode today, Kara and I talk about adaptive vehicles and what that process is like and how expensive is additionally. We talk about some of her humanitarian work and traveling and along with her diagnosis, as well as just how we can increase representation of the disability community, and many aspects of society. Hey Carl, thanks so much for joining freewill and Mccartin podcast. I'm your host Carter white coffin to give a audio description. I am a white female in my late twenties, and I'm wearing a maroon colored headband with about shoulder length hair. That's Brown it straight wearing a black shirt and I'm in my bedroom, which has plants and a fuzzy white cream colored blanket, and a cross section of a tree behind me. Hey, Cora, how are you? Speaker 2 00:03:48 I'm well, thank you credit and good morning. Thanks for having me. I am an Indian biracial woman with dark Brown hair. That's tied up like a big post on the top of my head with green eyes and all of tone skin. I'm wearing a dark purple crew neck, top sitting in front of a pink plush sofa and a pale blue background. That's covered in gold picture frames. I'm in 44 years old and I live in Smyrna, Georgia. Speaker 1 00:04:18 Yeah. Thank you so much for finding that audio description. It's so important for those listening, who aren't familiar with audio descriptions, it's helpful for those who are blind or have low vision. So I brought you on the podcast today. We are good Instagram friends, also friends and wife, and I saw your post about Derek car conversion. And as you use a wheelchair, I love to dive into the process of out that and what that freedom has been like for you and just shine a light on that transportation and mobility that you've been given to you. Speaker 2 00:04:52 Sure. It's definitely a life changer. I'll say I transitioned to a power wheelchair, which was my first wheelchair. I transitioned from a Walker two years ago, exactly two years ago this month, actually. And luckily I had specifically bought a smaller wheelchair. We both use the same kind will, uh, because we didn't have a wheelchair accessible vehicle. I drove an SUV, my FA my husband drives a pickup truck. And so what that required was every time we left the house, we would have to, in the beginning, we didn't even have a ramp out of our house. My husband would have to take apart the wheelchair into three pieces and manually lift it. Now he's a very strong man. That's fantastic. But if I ever wanted to go out with my friends or when my parents visit my father's in his seventies, it would require that same manual assistance, which becomes taxing, especially if you want a full day out and to run multiple errands. Speaker 2 00:05:51 So we knew that a wheelchair accessible vehicle was needed, but the price was the first barrier. First and foremost. I mean, we couldn't, many of them are very, very expensive because you're not only paying for the vehicle itself. You're paying for the conversion to make it wheelchair accessible. Another layer to that cost are hand controls. And I don't have the upper body strength to use manual hand controls, which are quite affordable. Electrical hand controls can run anywhere from 32 up to a hundred thousand dollars. And because my condition is progressive, of course you don't want to just buy one type of hand controls and then think, okay, in one year or two years down the road, you're going to need something much more sophisticated. You know, you don't just get to go on to any lot in any car dealership. And, and there's a variety for you to choose from. Speaker 2 00:06:43 There are limited numbers of distributors of wheelchair accessible vehicles. And of course you want to make sure that you're getting one that has the right type of equipment, especially for safety and security for yourself, for whether you're a driver, not the other passengers, but also other people in the road. And that's everything from a ramp that is going to be locked down and stable in the car that the wheelchair itself is going to have be secured. And all of these things have additional costs. So we worked through mobility works, which does have a national presence in the United States. And again, you have a, there are a limited number of types of vehicles that can become wheelchair accessible. They have to be large enough in terms of to have the seats taken out in the back. And if you're lucky, you might actually still have seats in the vehicle themselves. You also have to take into consideration. There has to be room for the wheelchair to move around. And again, if you have a much larger wheelchair than one like mine, some lot of vehicles aren't going to work for you. And I think also being, you know, I consider myself still young, the idea of having this massive minivan, especially when I'm not a mother. You know, I'm not soccer mom with all these kids. Speaker 3 00:07:55 And the idea I was put off Speaker 2 00:07:57 By the idea and was hoping for a sexier vehicle like the Ford Explorer, but before you can go and buy the car, you actually need to take a test that it was a strength test. So inside of mobility works their compound. There's a company called a freedom mobility and their idea to four-hour assessment with an occupational therapist in December of 2018. It was actually the first time I think I understood also the severity of my impairment because in casual conversation, the person doing the assessments that will technically you're quadriplegic. And that was a huge shock. I didn't realize that my body had weakened that much with that. Then as mentioned, they sort of give you an idea of what type of technology you would need to drive the vehicle yourself. And you get to do test drives. You can take driving lessons. All of this is incredibly expensive. Speaker 2 00:08:49 The assessment itself is an out of pocket expense, $600. The driving lessons are very expensive there. I believe there are a hundred and a hundred to $150 an hour, which I didn't take them. And the hand controls that they were talking about mean told me, we're at a starting point of 30,000 us dollars. I don't have that kind of money. I'm an entrepreneur and some years are better than others in terms of work. And we definitely, my husband and I were not in a position to fork out that type of money on top of whatever you're paying for the vent. Just to give people an idea of what kind of, how much vans can go for. You can get something that's quite old and used for $30,000, 30, $40,000. We wanted a van that wasn't so old, so that, you know, very quickly there might be damage to it and we'd have to trade it in. And so we, our van costs approximately 27, $28,000. It's a used Chrysler from 2016. And then on top of that, with the conversion, the total came to about $52,000. And that was the cheaper one of the other, some of the other models that we were being shown that were 60, 70, $80,000. Speaker 1 00:10:10 Wow. That is, Speaker 2 00:10:13 Yeah, it's just shocking. Wow. Speaker 1 00:10:17 I had no idea. And I'm really appreciative that you're sharing this because this is something that I've started looking into. Speaker 2 00:10:24 Yeah. You know, and there's, again, it's, um, it's a difficult decision because you have to prioritize so much of living with a disability. There are exponential additional costs in your lifestyle. Healthcare costs, equipment costs, supplement costs that aren't covered by insurance. And so I think there's a $5,000 grant you can apply to with mobility works. We looked into it, we didn't qualify. And so we knew that financing was going to have to be the route that we took because we couldn't pay full price out of pocket. And we also decided that what we knew that we couldn't afford at the time that we bought the vehicle was actually just a few months ago, we couldn't afford hand controls. So it took two years to get to the point where we would be able to afford the monthly payments for the vehicle. And we were very lucky. Speaker 2 00:11:17 Qstream is a company out of Florida. Um, run by Canadian family, loved them to bits, Julie Boyton. And they're old friends who I know through my UNICEF days. And they were so generous as to donate to us the securement equipment that we needed inside the vehicle that secures the wheelchair to the vehicles. So God forbid, we were in a, in an accident, the wheelchair doesn't go flying, hurting us or going through the windshield. So while there is an inner, there is a sense of freedom and ease and convenience in having a wheelchair accessible vehicle. And that my husband or whoever with me, doesn't have to now break apart and lift this heavy wheelchair, which, you know, my chairs are just going to start getting heavier. Um, I still can't drive. And that's really hard, you know, having driven since I was 16 and only stopping to drive two years ago and still a 44, a him a fiercely independent and go get her social person who loves to be out and about, and having to depend on other people to give me a ride is, is hard. But you know, you don't, you try not to harp on that and you make the lifestyle change and understand that how fortunate we are compared to most of these. Finally, we'd be able to afford the vehicle. Speaker 1 00:12:37 Wow. Thank you so much for sharing all. That is something that I had started looking into and considering what the cost of a conversion would be to get an adopted wheelchair vehicle or a wheelchair accessible van. And these out-of-pocket costs are over the top. And definitely not something that I could Ford as a single individual. And I don't have hundreds of thousands of dollars to convert this. And on top of the assessment and the driving test that you were talking about, you know, I didn't even know that was something that was required, that you have to get an assessment to even see whether or not you're going to get hand controls or your strength. Um, it's, that's incredible. The disadvantages that people with disabilities have in order to get that freedom is really unfortunate. Speaker 2 00:13:31 Absolutely. I mean, I understand the safety precautions behind it, but the fact that it is so expensive makes it inaccessible to most. And you know, you, if you're going to drive your vehicle, not only do you need the right hand controls that suit your body, you have to take a driver's test with that vehicle at the DMV in order to get the right driver's license. It isn't the same driver's license, you know, that I've had throughout my adult life, driving a vehicle without the conversion we have seen actually, because we've gone multiple times from ability works and they have, um, what do you call this? Like the mechanics are there. The tech shop is there, which is really cool when you go and you meet these, these people who work on these vehicles or work on the conversion. And if you have unlimited money, we saw you can do amazing things, you know, but these are, we're talking hundreds of thousands of dollars. Speaker 2 00:14:23 We saw a pickup truck. It was, I believe it was like an F uh, Ford F-150 F-150. And the way that was being converted to the whole side of the pickup truck basically opens up and where the wheelchair drives in and then is lifted up. And the whole side of the vehicle closes. I was like, well, then one day, if we ever had unlimited money, I wouldn't mind having a range Rover or a mini Cooper that could have that kind of thing, but you know, those pipe dreams. And I just, I just think, you know, it's also a huge loss for society in that when we limit the participation of people with disabilities, because we don't have access to participation. And especially those of us who w we live in the suburbs, where there Atlanta in the greater Atlanta area does not have a good public transportation system. It's very limited. And so forget that, uh, I would take the bus if I could get to the bus, we don't have enough sidewalks around where we live to actually even get me to the closest grocery store. I always tell my husband, I want to move because I wanted to live in a place where I can go out of my house and my wheelchair and buy milk. And there's nowhere I can go to get there, to buy milk because the sidewalk stops. Speaker 1 00:15:37 Yeah. It's, I think it's really unfortunate. Um, something that I advocate heavily for is the sidewalks is really the, the epicenter of mobility and freedom in cities, because the sidewalks are what you use to get to the bus, stop, to get to the train, to roll down the street, to get to the grocery store or CVS or target, or to go to concerts and events and things. So they are that focal point. And without the sidewalks, you're rolling in the street and it's really unsafe. So that, I mean, that's the life that I live through. I don't have a car and I re rely fully on sidewalks or mass transportation. And I choose to live in the city because I can't afford living in the suburbs and having to drive everywhere and then not having sidewalks, but living in the city in of itself is expensive. Right. So, you know, I, I don't know as I'm actually saving money in the end, but I think having the ability to just roll outside of my apartment and go to the grocery store, which is really literally right next door is really convenient for myself. Speaker 2 00:16:48 Absolutely. And in retrospect, you know, I lived in the same area of Atlanta and Midtown where you live now, when I first moved to the United States seven years ago, and I was using leg braces and I took a Walker on I canes when I first arrived. And just because Midtown is Haley, you know, I lived in a building almost a couple blocks down from you that had the grocery store in the basement of the building on the first level and had restaurants. So really that was my world. It had a spot. I had a dry cleaner who was one of the reasons that I chose to live there because navigating Midtown, when you have a Walker or when you're walking on canes was very, very challenging. And even though there was a Marta stop right there, can you imagine I have been in the city of Atlanta for seven years and I've never taken Marta just because, especially now with a chair, maybe you and I need to take a field trip because I don't know where I'm going to get stuck when I I'm Canadian. Speaker 2 00:17:42 And when I go home to Toronto, you actually call ahead to the subway station. There there's on the website tells you which subway stops have elevators, but they always tell you believe before you leave your house call, the subway stops that you think you're going to get off at, which is unfortunate, because that means I have to have my entire day planned out and make sure the elevator's working. And it's just like, come on people. This is 2021. Smart enough. Think about the revenue that they're losing by not having people, not only people with disabilities with mobility AIDS, but what about parents with carriages or elderly people, you know, who also need assistance? It's just, again, I think there's a huge loss business opportunity because when we're out and about, we're not only taking that public transportation, we're spending money in restaurants and bars. And as you said, going to festivals or whatever it may be, then just adding to that great diversity of humanity by contributing ourselves and all of our fantastic ness to the communities in which we engage. Speaker 1 00:18:44 Yeah. If anything, we may probably spend more money than the average individual, because we need more things in order. I guess it depends on the person, but generally need more things in order to thrive and survive. And yeah, I agree. Huge loss in ROI, especially in the disability community. And that goes into accessibility into the built environment, right? Can we even get into restaurants and bars and grocery stores? And I think the mainstream big chains like target and whole foods and Kroger and stuff here in the States, those are accessible to get into as far as we know, especially in the South, because they're giant, they're huge and they're flat and they're very spread out. So, but that goes to, that becomes a problem for those that can't walk long distance. And I know what that was like going into a target. And the women's section was all the way in the back corner. Speaker 1 00:19:45 And it was like, Oh goodness, this is, this is a challenge. And it's like, well, I don't want to use one of those granny looking scooters because people will look at me and question my disability as an 18 year old when I was walking, but having trouble and really couldn't walk long distances. So it's this, there's so many just societal things that continue to happen when you're out and about, and you have a disability. And even if you have an invisible disability, I mean, you face even more struggles because you have to kind of prove to other people that yeah, you do have a disability. You just can't. Speaker 2 00:20:24 Absolutely. I always say that the most difficult barriers that we're dealing with are the attitudinal barriers. And I think this is why it's so important that we do have access to be out and about in the community to shatter those stereotypes and the stigma towards people with disabilities. So people can see our humanity and it's like, you know what, I'm right with you. And in target card. And I want to go around and, and the wheelchair, when I transitioned to a wheelchair, people were like, are you okay? You know, that negative stigma towards a wheelchair. And I was like, are you insane? This is fantastic. Now go as fast as I think I can go around every Island target. I can't necessarily reach everything. Um, but it has been a huge sense of freedom. But then you're presented with just another plethora of barriers going into a conference or a reception or a happy hour or a gala dinner, charity, dinner or something. Speaker 2 00:21:20 And you're in a wheelchair. People treat you like, you're the charity of the evening. It's like, come on. So you're constantly trying to, to show people and it can be a active activity of trying to explain to people or just by being present and saying, I'm smart. I have every right to be here. I'm a normal person. But unfortunately, because we don't see the representation of people with disabilities, I would say equal to the numbers that we are. I mean, we're the largest minority in the United States, 64 million people in the United States alone, 1.3 billion people worldwide. And we've been excluded for so long and therefore invisible. It's still something new. And that's, that makes me really sad. You know, I'm sure you've had issues with the TSA when you're traveling. And just my thing is sometimes my only saving grace that gets me through those really difficult interactions is, is that I hope I was the one to bear the brunt of your ignorance and cruelty or insensitivities. And that, that the experience or interesting exchange that we've shared today will prevent you from doing that with the next person. Cause I do have a thicker skin, I think the most. Speaker 1 00:22:32 Oh, definitely. I think that thick skin is, it comes second nature with people disabilities. I mean, at least if you, if you're recently diagnosed, it will definitely grow over time because it took me a few years to, to not think about all of the, you know, I got you look pregnant all the time and that's when I was 16, 17, and that was really difficult. And because, um, I had lordosis and when I was walking, so, and I had a little bit of a gate and so I was not a very eloquent Walker and yeah, I got a lot of weird looks and that's, that's difficult, especially as a teenager with a disability. So those attitudinal barriers are, are really key. I think, where you also are missing, like you were saying, going to a charity event and people thinking that you are the charity. I was at an event probably two years ago and I was the only person who used a wheelchair at that event. And people did ask me, Oh, is this for you? And I was like, wow, did I really just experience that? Do people actually think just because you don't see someone out, um, out in about of their house using an assisted device means that they don't deserve your pity and they don't deserve those comments that you're saying, like ask someone if that's an appropriate thing to say before you think about saying that. Speaker 2 00:24:05 And you know, I, I was diagnosed when I was 30 years old and I, so I grew up without a disability, any impairments, and I didn't have anybody close to me either. So I had no understanding. And I grew up with the same able as ideas with a negative connotation of what it meant to have a chronic illness and a disability. And similar to you. It took me five years to disclose to my employer what my condition was. I was working abroad with the United nations and I was afraid to lose my job. And people did judge me and question my ability to manage what they assumed was this huge, psychological and emotional burden of living with an impairment and a chronic illness. And it's not to say there aren't difficult days and it does define my life. People say, well, don't let it define you. Speaker 2 00:24:47 Well, my life is defined by my impairments, what I can and cannot do my relationship, but I don't let those attitudinal barriers or the physical barriers define my life. That's the difference. And so when I was diagnosed and then, you know, finally could come to terms with, I think this is what life is going to be like, and it is going to get worse and there's going to be constant changes. It has actually allowed me just to be live very intentionally and to live in the present. And so when I am out and about, and people make comments, you know, people will come up to me in restaurants, say good for you, you know, for coming out with my girlfriends and having a fun night out or people will tell me, Oh, you're so lucky your husband married you this way. And one when the, you often it's the, the comment themselves are so audacious and they can be hurtful or rude. Speaker 2 00:25:42 Um, I try to take it as an opportunity to teach them and to say, well, actually, you know, he didn't marry me despite my disability, but because of the way I live my life, I'm trying to break down barriers and be an advocate for others, not just myself. And I think that that's why our participation in society and having access to be out and about through transportation and affordable transportation is so important because we need to change the narrative. And when we become proud, as we are, as people with disabilities, that's that information that education for others breaks down the stereotypes, breaks down the stigma. It then changes their perspective. As mine was changed over the years, meeting other people with disabilities. I'm like, these people are awesome. They're a bomb. They're so innovative. They're so creative. They're such fighters going out there. And it isn't this whole thing of inspirational porn and less be brave because we're living our lives with disabilities. Speaker 2 00:26:41 No, we are facing a of barriers every single day. And people say, Oh, when you go out of your house, now I have a multiple multitude of disabilities or a part of me barriers inside my house. You know, we, I had a wheelchair for a year before we could afford to have a ramp built in our garage. So I could get out of my house by myself. We still can't afford, you know, we chose the vehicle over, renovating the bathroom and I've just had serious surgery. So I can't show her about myself for the last two months. So having the bathroom renovated where I might be independent, it's on the wishlist. Right. And that wishlist is very, very long. And again, none of this is covered by insurance. So it's always like, okay, got this contract. Or you had a good speaking engagement, you know, how are we going to spend this money? Speaker 2 00:27:31 And the challenge then with that is the financial security and for people with disabilities, for the features, you know, my husband is strong and strapping young man, he's younger than me. Um, but he himself, he's a combat wounded veteran. And God forbid, you know, some of his injuries become more serious than we also have his future to take care of. So people are always giving me advice of how I should prepare for my future and prepare for retirement. And it's like, if there's money left over these days, other than the little bit we might put into savings, we're just trying to keep up with how life is changing and the, the accessibility and the assistive AIDS that we need now to live life to the fullest. Speaker 1 00:28:13 How there were a lot of really good, uh, goodies in there that you were saying about just fearful of losing your job. And I think there's still a huge barriers in the workplace environment with hiring recruiting, and retention and just getting past that door. And then the attitudinal barriers that come with the fact that, I mean, your life is defined by the disability, right. You know, and especially having a progressive disability, you and I both relate to that. And that one year is not the same as the next year. And so we're constantly having to adapt and come up with innovative ideas to basically not really overcome, but just get used to that new way of doing things because you can't do something physically, the way that you used to. And the, uh, what I'll show is interesting is the inspirational porn. We see that time and time again, one of the ones that came out last year during the pandemic was a boy with autism who was really captivated by stocking. Speaker 1 00:29:15 I think it was the orange juices in the grocery store. And it became national news that the, the man who worked for the grocery store helped that boy with autism. And it was, it was national news. And I was so surprised. It was like, okay, so you have an autistic boy who is captivated by stocking orange juices and the store got a college education full ride, like I think, got a car. I mean, all of these great things, just because he helped an autistic boy just in the moment. Right. And it's just, that's totally unnecessary. And just, you raised another point about not being able to, you have to choose between, can I afford a bathroom renovation so that I have the freedom to take a shower by myself, or do I want to have freedom to be able to get into a car? And that was not a hundred percent freedom, right? You at least can have someone drive you, um, with wheelchair tie down. It's, it's really sad. Speaker 2 00:30:23 Yeah. Do we choose independence over security, safety, and convenience? And just the fact that we have to make those choices, you know, we're not asking to live a millionaire's lifestyle where we are just, you know, again, wanting to be participating members of society, be able to do our civic duty, whether it's voting or participating in politics or going to, I don't know, protests. So many things that, you know, we live in the city of Atlanta, which is an amazing social justice minded city. And there's so many more things I'd love to be involved in around my house. They just can't get there. And just going back to the inspirational porn piece, when I try to explain to people who think, Oh, that was so sweet that got, you know, a good for that young man, the store worker it's like, would you have thought that it was inspirational? Speaker 2 00:31:12 If the young man who wanted to stock orange juice didn't have autism. So take the disability out of the equation. Is it still inspirational? And the other part is, is that, why are we not talking about issues of unemployment and fair pay? I mean, we're still fighting for sub minimum wage to be dismantled in this country. And hopefully the new administration who's committing to saying that they will do that. They will in fact do that. I would have loved to seen a news story of how the store then went and offered the young men with autism, a job to be a stock person like that other guy, and that they got paid the same wage. That for me, would have been the real win that should have made national news. Speaker 1 00:31:53 Oh, that would have been really cool. That would have been a whole different story. And that would have been huge praise from the disability community because we don't get that representation. And to go back to your point about the judicial system and the voting that we did this past year in Georgia, they did a lot of voter suppression, especially that impacted people with disabilities. They originally were selling, sending out mail in ballots and they stopped that. And you then had to personally request one and then the, they sent the USBs to remove mailing boxes so that you kinda just, you know, roll down the sidewalk or go a few blocks or take the train to go drop off the, your mail in ballot. You had to actually find a precinct to drop that off. And a lot of times that required a car to get to. So, Speaker 2 00:32:47 And that then excludes not only people with disabilities, but people who can't afford transportation, right. To get their people in rural areas. And I think it's just unfortunate because our communities and our societies, our businesses or civic groups are faith-based groups or schools, or universities are so much richer when we have everybody involved. And so these, again, this perpetual exclusion because of lack of access and lack of understanding, you know, that disability rights motto was nothing about us without us. You know, when they say, Oh, it's too hard. It's that's because they don't know how to do it. Well, then hire people with disabilities because we know how to do it. And this misconception also that it's so expensive, you know, in the workplace workplace accommodations are not that expensive. When we think of the investments in public transportation, yes, the initial cost is expensive, but then you think of your increased revenue by the number of users by which it will increase. And that these are long-term investments for everyone. So sometimes it boggles my mind and just how close minded that goes above and beyond the insensitivity facing. Speaker 1 00:33:56 I saw on Twitter this morning about a guy who talks a lot about digital accessibility and a one Y ally, uh, for website compliance. And he had this really wonderful thread about stating the importance of why bringing in people with disabilities, from the start in your prototype that you are saying is inaccessible. And can't be tested by people with disabilities because it can't be used with a screen reader. Well, why didn't you build it from the beginning to be able to use with a screen reader, if you brought in the people with disabilities in the very beginning to test it, you're going to be able to get a lot more feedback and build a better product because you know what labels need to be added? You know, the difference in placement and colors and contrast and flashing things that can be sensory triggering for individuals. And then that kind of led me down into a rabbit hole this morning of website accessibility, and, you know, who's enforcing this. And when I went, I went and looked at the Apple app store and Google place, guideline reviews for submitting an application. And there's nothing in there that requires that apps be made accessible from the start when you're submitting it. And if we think about enforcement, you know, why aren't these big businesses that literally control the world? Why aren't they starting with accessibility and putting that and baking that into the very beginning? Speaker 2 00:35:27 I think that's a lot of the movement that we see now is explaining to businesses. They want to know how it impacts their bottom line. They want to know how is it that going to increase their market share how is it going to contribute to their brand value? And I think one of the great things about social media and access to the internet is that our stories and that we are consumers and that we are really qualified, often overqualified workers are here who want to be a part of it. And while we see the sort of patchwork of engagement of disability inclusion, you're right. Why aren't the big companies doing their part and being 100% inclusive is because even though in America, we have the ADA, the Americans with disabilities act is, is that they're not being held accountable to the full extent of the law this table, but we have this, this, this, and this, but it just, again, isn't to the full extent of the law. Speaker 2 00:36:23 And if you are someone with a disability who, for some, how has faced the situation of discrimination to actually take that to court and to fight for your rights is not only such a long and arduous process, it's so expensive, right? You're not necessarily always going to find a lawyer who's going to do that kind of work for you, pro bono. And this again, I think is why representation and our participation is so important. Why should it also fall on us that we are having to stand up and proclaim? These are our rights when it's written in the law, all of these things, these challenges and these injustices, and it becomes even more ingest. When you think of African-Americans people who live below the poverty line, people of color, all the intersectionalities of minorities that make them more at risk or more vulnerable. This is like the driver of why I do the work that I do because it's ingest, you know, so if I have to be the cheerleader and or the one who's raising the red flags will that I'm going to do it. I think that so many of us that again, I feel really privileged to be able to do the work that I do, but it took me a long time to come to that level of being very proud. Uh, who've being a part of our community of people with disabilities. I'm glad that I got there and I hope that anyone else who's struggling, especially with that self esteem and pride that they, uh, they join us and we can help build it up in them to make each other stronger. Speaker 1 00:37:56 Yeah, thank you. And to expand more on the disability rights, and the problem that you're describing is compounded, especially when you don't have money to hire a lawyer. I do know there are lawyers that work pro bono for specifically for disability rights when they know that they're going to win. And, but the other thing is when you do go through court and trial and all that, it's an arduous process among currently following a case that I've been in contact with three years of, um, I'm not a member of the case at the lawyer just sends me information it, and then I've also been in, in cases where, when through arbitration and also went through a settlement, but overall it's why should we have to stand up for our rights when it is written in the law, it's not enforced and it's re it's on the people to enforce it. Speaker 1 00:38:57 And that's so backwards because it should be the companies and the, and the organizations that believe in accessibility that believe in creating inclusive inclusion and diversity in their policies, and actually perform those practices so that everyone can feel included regardless of their race, gender, disability, status, veteran status, all the above faith, anything. So we have a long way to go. And I really appreciate this open dialogue and conversation about the issues that we face day to day and in our country and globally, really. I mean, this isn't just a United States issue. It's everywhere. Well, thank you so much, Kara. I really appreciate it. Speaker 4 00:39:46 Thank you friends for listening. Please rate and follow this podcast. We're text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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