Carissa Johnson and Keith Hosey interview Mark Johnson, a long-time powerhouse for change in the disability community. Mark and the Disability Caravan recently visited Carissa at the Murray office of the Center For Accessible Living. He talks about the early days of ADAPT, where the movement is now, and gives ideas for how we can get where we want to be.

To learn more about Mark Johnson, visit https://newmobility.com/person-of-the-year-mark-johnson/

Learn more about the Latonya Reeves Freedom Act

Visit the ADAPT Virtual Museum

<img alt="A bland-and-white photo of activist Arthur Campbell Jr. being led away by the police" src="https://drive.google.com/file/d/1qANak9Mcc4EUhJeckid9eDDH0VAXttj1/view?usp=sharing" title="Arthur at demonstration credit Tom Olin" />

Learn more about the Disability Caravan

Watch the movie, When You Remember Me

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript:

Welcome to Demand and Disrupt the Disability Podcast.

Here, we will learn to advocate for ourselves and each other.

This podcast is supported with funds from the Advocato Press based in Louisville, Connecticut.

Thank you for joining us.

My name is Kimberly Parsley and I am joined today by Carissa Johnson.

You all have heard her before.

She's been on the podcast as an interviewee and an interviewer, and that's what she's doing today.

She is, she conducted our interview today.

So Carissa, tell me who we're going to be hearing from.

We are going to listen to Mark Johnson.

He is not one of the original 19 of ADAPT, but he joined the organization not long after they started.

So he is kind of one of the OGs a little bit, and he's been involved in disability advocacy since the 1970s.

You'll hear a lot about what he did with transportation and the city in Atlanta for, that happened right before the ADA was signed and just so many different things.

He had a plethora of information.

So I was super excited and lucky that I got to ask him to do this.

Oh, wow.

Okay, great.

So tell me, you mentioned ADAPT and we have talked about ADAPT before.

So tell us again, what ADAPT is.

ADAPT is a disability activist organization.

It started as a movement to help individuals fight transportation issues on buses.

And Mark will talk about some of that.

Once that issue was sort of resolved through the ADA and the civil rights, they have now moved on to home and community-based care and wanting that to be a civil right for folks.

So they do things like demonstrations and sit-ins and activism for individuals with disabilities.

And they actually do have an online museum.

They started in the 70s, so you can see articles and different things that they've done.

I would encourage people to check it out and I'm sure we can link it in the show notes.

Absolutely.

That's exciting.

And now we have a chapter of ADAPT here in Kentucky, Keith Hosey, who joins you in the interview.

He started the Kentucky chapter of ADAPT and I believe they've already, they've been doing some stuff, right?

They have done one demonstration, I believe, and they hope to do more.

They got individuals from the national organization to come down and do the training.

And as part of the training, I think it was this past year, they actually do a demonstration.

So it's more than just sitting in a classroom and here's ADAPT and here's what they do.

No, they throw you in the deep end.

They are doing an administration right then.

So Kentucky does have a chapter now, which I'm really excited about.

That is awesome.

Mark talked about, I hate to steal his thunder, but I'm a fan girl during this episode.

He talked about, you know, how until there's an emotional link, there's not any room for intellectual change and that's what ADAPT tries to appeal to.

It tries to appeal to the emotions of folks and you know, it's not like they started not doing their traditional channels of talking to city representatives and state representatives and trying to make the changes that way.

They did those things that, you know, sometimes we've seen in our history, it takes more than that and that's what ADAPT does.

That's awesome.

And you met Mark, how?

How did you meet him?

I really fell into my meeting with Mark.

I got a call from Patricia Puckett.

She used to work at a disability independent living center in Florida and she actually retired in Murray.

So she and I became friends once she moved here.

She donated some stuff to us, we talked on different things, but she says, hey, I have this friend and they're bringing this caravan to Murray and actually they're spending the night with me.

She said, this caravan is all about disability justice and history.

Would you like to have an event at your office?

And I said, heck yeah, of course I would love to have an event in my office.

So turns out what I didn't know is this caravan was scheduled to go all across the country.

Different places, different organizations, different independent living center.

They went to almost every state and their hope was to bring light to what they're currently advocating for the Latonya Reeves Act and to talk to individuals with disabilities and hear their struggles and just, you know, they had a video that they showed on some disability history and also on the Latonya Reeves Act and they stopped in Murray, believe it or not.

So that's awesome.

I didn't know I was talking to, and I use their quotes, the Mark Johnson until he told me, he said, you know that this is right.

And I'm like, no, you know, Mark Johnson is just an ordinary name.

You hear it every day, anybody could be named that.

And I Googled him and my jaw dropped to the floor.

And now Mark's going to know that story, but anyway, that's how I met Mark.

His brother drove the caravan and he helped organize that and also the bus that went around for the 25th anniversary of the ADA.

Wow.

That's exciting.

Exciting stuff happening in Murray, huh?

Yeah.

They also stopped at Louisville.

So our main office got a stop.

They stopped at the Breyer Museum up there and did a, did it in a tour as well.

So, Oh, okay.

Okay.

Cool.

Now the only two places in Kentucky, they stopped.

Oh, wow.

Yeah, they did.

Murray.

I couldn't believe it.

Now what is the Tanya Reeves Act that they were talking about?

That act is to, it's basically the way Mark described it and the way the video described it.

This individual wanted, she basically wants to be in her home and we've made some movement with Omstead, but it's not a civil right for individuals with disabilities to have home and community-based care.

Yes, some states have some things in place, but it's not a civil right, believe it or not, in 2024.

So that's what the Tanya Reeves Act hopes to achieve.

And so what, what, what we're saying with that is that if it's not a civil right, that you can age in your home, then someone else can basically say that you need to be institutionalized, right?

Exactly.

Whether you want that or not.

Exactly.

And that's a sad, sad thing.

It is a sad thing and so it is a sad thing and it is an infuriating thing because you're right.

It shouldn't be that way in 2024.

Well, people should have the right to live where they want to live despite, you know, we should have those supports in place, but we don't.

We don't.

It still takes people organizing and unifying to get these things done, doesn't it?

Yes.

And that's what ADAPT is doing.

One of the things that Mark Dawson talked about that I really fell in love with, you don't hear me a lot in this interview because I'm just in awe of everything he said, you know, I don't feel like individuals are as passionate in the younger generation as they were in this generation of individuals with disabilities because they have so much now compared to what individuals have before.

And he talks about in his interview about how a lot of individuals think, you know, they just assume we're unified as individuals with disabilities.

He talks about us being a part of diversity and yet people don't, you know, it's just the group of individuals with disabilities.

He says we need to mobilize more.

So advocacy doesn't necessarily have to mean you have to go on a demonstration of ADAPT.

Do something.

If you want to organize around disability arts, do that.

If you want to write a book, do that.

If you don't find your niche and find other people with that niche and do something because, you know, it's going to take that change to continue to, to make strides forward.

And I'm just scared that people aren't doing that.

You know, that's, that's one of the reasons that we decided to start a podcast is because we were afraid that as the generation who fought for our civil rights ages and maybe becomes less, less active in the movement, we don't want their stories to be lost.

We don't want to forget about their struggles.

And I think one thing we have learned the hard way is that if we don't fight for the rights we have, those rights can be taken away.

Absolutely.

I mean, look at, you know, how they've tried to plug away at the ADA, you know, saying, oh, mitigating measures, what could that be?

That could be glasses.

You're not disabled anymore.

You know, all of that kind of thing and people can chip away at what they've done.

Yeah.

So we have to be, we have to be constantly vigilant and you're right.

We have to be out there.

We have to be seen.

We have to, we have to make sure the community knows that when we talk about people with disabilities, we're talking about people they know, right?

Your neighbors.

And I know I'm in a rural area.

I hear all the time from consumers, you know, I'm just one person.

What can I do?

All right.

And that just makes me so sad because as long as you have a voice or some other way to communicate, use it.

Do something.

So I'm glad we can unify that way.

We can mobilize that way.

Absolutely.

Absolutely.

And demand and disrupt will be here.

Absolutely.

Absolutely.

All right.

Well, now we are going to hear your, your and Keith Hosey's interview with Mark Johnson.

We are here with Mark Johnson, one of the founders of ADAPT.

He's done several things since then, and we're here to hear about some of his stories and some of the importance of disability and what he's been involved in and what we continue to be involved in.

So welcome, Mark.

Thank you very much.

I want to thank you and your group, you know, for the work they did there in Kentucky around the caravan.

But also, I think finally, of Mary Johnson, who, you know, did the Ragged Edge and the This Way Rag and think, I think Blueville, I think about more than horses.

And, you know, in the other city that it stopped in was Pat Puckett, I used to obviously be the executive director of the Georgia state fight in the council.

So, you know, congratulations on the work you all did there and we have an opportunity for you next July.

Awesome.

And then we're also here with Keith Ozzie, the Roving Reporter.

Hey Mark, it's a real honor to have you here on the podcast.

And I'll just take a moment really quickly to plug the Avocado Press since that is who our sponsor is for this.

And Mark was kind enough to just randomly mention the Ragged Edge and Disability Rag, which were published by Avocado Press.

Well, you know, it's interesting because, you know, they did a great, Mary and Terry Sue Hartman did a great guide on, you know, about the media.

And then Mary actually was the first really public, you know, back then you belong to an organization and you've got a publication and you couldn't wait until the end of the month when you got the publication, you know, now you just grab your phone.

And a lot of organizations struggle with that transition, you know, what made them relevant back then was information.

And then all of a sudden when you go, well, good grief, people can get information different ways now.

And right about the time Mary was doing that, you know, Lucy Gwynn was doing the mouth or actually the magazine initially was called This Brain Has A Mouth because Lucy had a brain injury and she started taking on the medical industrial complex that, you know, where she got a rehab and she was afraid that they'd come after her.

She got so much incursion support, Lucy, you know, then, you know, said this brain and mouth called mouth.

What's interesting about that is, you know, I know we're going to talk a little bit more about the caravan, but the caravan goes to Amherst University of Massachusetts next week and her, you know, some of her, you know, main stories will be on display.

I mean, they just like with the Ragged Edge or this way rag, I'll just say that for now, you know, they're both now been digitized and so they're not lost.

You know, there are a few people like Marsha Katz out there in Montana who literally have every print and copy.

So great, great work back then because it was like, you're sure we're going to get mainstream press to cover our stuff and newsletters were good.

You didn't have the internet, well, in the context that we do now.

So yeah, I found memories of Louisville, including I went to a wedding there and went and I didn't drink the whiskey, but someone else did.

So you mentioned Louisville, you're no stranger to Louisville.

I wanted, and I'm pretty sure, you know, some of the big names in Kentucky that disability advocates know, of course, Arthur Campbell Jr. is still involved in advocacy here in the state.

Cass Ervin involved for a long time, they, I know that they were involved and I'm just going to jump into ADAPT because I want to, if that's all right.

The only ADAPT demonstration that's ever happened in Kentucky prior to this year was, it was actually on Derby Day here in Louisville and they blocked the buses on the most important day in Louisville.

I know that Arthur was involved that I'm not so sure, I'm not positive about Cass, but I know that several other adapters had traveled into Louisville to support that, as well as, you know, Arthur kind of leading the local troops.

Yeah, we, I got married and I met Susan, my wife, in the late seventies in Charlotte, North Carolina.

That's where I grew up and that's where, you know, I was there from like the third grade till the end of college and then Susan and I started dating and she moved to Colorado and then we stayed in touch and decided to get married in North Carolina then I moved to Colorado.

So when I went out there, it was 1981 and some of your listeners might remember the, you know, when Reagan got elected, there was this lawsuit called APTA versus Lewis.

Secretary Lewis was the Secretary of Transportation under Reagan and they won, I mean, the APTA American Transit Association won and they're the trade group for all the transit systems around the country and they won and therefore the mandates in 504 for lists on buses went away and what you had is the local option.

So each community could decide without our input, by the way, what was best for us and so Denver had been getting lists on buses for what they call their local routes, you know, around the metro area there, but they had what they called express buses and the express buses are the ones in the suburbs, so if you grab an express bus, it was a straight shot downtown.

If you got in a local bus, you had to stop at every stop.

So it was a difference between a 20-minute ride and an hour and 20 minutes, right?

So I got involved, moved out there, went to work for an independent living center that doesn't exist anymore called HAIL, Holistic Approaches to Independent Living and at the same time there was the Atlantis community, which is over 50 years old now, and Wade Blank and some others had started Atlantis, there's some, it was great, if you haven't seen it or heard it, the Gang of 19 documentary done by Denver Public Library is a great documentary to watch.

It tells the history of the heritage house in Atlantis and the beginnings of ADAPT.

So when I moved out through the Gang of 19, they had already done their stuff in 78, they had already done actions like go around town and mark curbs that needed cuts and they busted them up with sledgehammers for press conferences and all that kind of stuff and of course that wasn't, they didn't immediately go do that stuff.

They tried the normal call, attend meetings, write letters, stuff.

And so we started getting calls around the country about how are you getting lists on express buses and back to every new bus has left and we said every tool in the toolkit, meaning keep doing what you're doing but you might need to do some more.

And we got a grant and the grant would pay for folks to come to Denver for a week ago to them.

And of course it was not a classroom, the first half a day, well actually first day was classroom, it's called the Pitch Fort, if you go to ADAPT virtual museum, ADAPT has a virtual museum that made by Stephanie Thomas out of Austin, Texas and actually is housed at the University of Texas in Arlington is where the archives are.

So we sat around a room and we went over to the National Council of Independence was having a national meeting, one of their first ones because they were just a new organization of the centers because it started with like 11 independent living centers back then.

And they were really interested in that being a membership benefit, which was a little disheartening.

So we went over to the Lannes and a guy named Bob Conrad, he's still alive, one of the original Gang of 19 came up with the name American Disabled for Accessible Public Transportation.

We'll say that five times fast immediate person, and they begin to write down ADAPT.

And then we did the lifts on buses from 83 to 90, we chased a lot of people, why do you go to San Francisco?

Aren't they doing the right thing?

We said, it's not about San Francisco doing the right or wrong thing.

It's about after this meeting there.

And it took us to Atlanta and Chicago and it took us to St.

Louis and it took us, well, actually, we went up in Canada one time.

We did not go to Hawaii, we didn't have enough money to do that.

But we chased them and until obviously, your listeners will know, you know, July 26, 1998, we signed a law and said every new bus should have a lift.

And the other thing that people don't really remember is there was money in the ADA that did a study about the feasibility to put lifts on over the road coaches.

And we all had to live by the results of the study and the study was done by DOT and Urban Mass Transit Association and the results said it's feasible and you don't lose revenue.

And so when you get on a Greyhound or a tour bus or a shuttle, if you're running into problems with lifts on buses, then they're not compliant with law.

So yeah, so that was the beginnings, you know, of ADAPT, we came up with the name in 83, which makes us, you know, 41 years old.

And then we came up the new campaign.

So that was called We Will Ride and a woman named Elaine Kolb up in Connecticut wrote a song called We Will Ride.

And then we came up with Free Our People and then she wrote a song about Free Our People and then she wrote a song also about Not Dead Yet.

There's some groups that people don't, ADAPT is not an organization.

It has no president, it has no executive director, it has people like Arthur who came in those 80s sitting in his chair like he doesn't really sit in his chair.

I mean, if you describe the audience, you hadn't met Arthur going, you know, are you going to sit up or lay down or get out with Arthur was one of the best is scooting out of his chair and laying in front of a bus.

So he was a burst of energy.

I know he got frustrated back then because media wouldn't interview him with his speech with his CP accent and it was frustrating.

I mean, it frustrated a lot of people.

They would interview non-disabled people because they really didn't want to approach disabled people.

And then they'd approach the good looking disabled people and then, but to get around to someone like Arthur who still has that board that my brother told me from my younger brother said he still has that board, Mark.

And I said, holy crap, you know, in the Jodi and sent me a couple of pictures of Arthur.

So fond memories, ADAPT is not a perfect organization, we've made mistakes, we've pissed people off.

Well, sometimes the right people, but what it is is Wade had a great quote until there's an emotional change.

No intellectual persuasion is going to work.

I think that's a phenomenal idea and thought, wow, what a bunch of history there.

I mean, just amazing to have lived through some of that.

I know Arthur had said, I think it was either 84 or 87 when they stopped the buses here.

And I want to go back to real quick, Mark, you said, you know, then in 1990 the ADA was passed and every new bus was required to have a lift.

I doubt that was a coincidence that that was in there, thanks to ADAPT.

Well, night is a good point.

In 1989, we were in Atlanta and we took over 75 Spring Street, which is the federal building that had Senator Johnny Isaacson's office in it.

And we took it over and refused to leave until we had a meeting with the OT in DC, right?

I mean, it's a lot of regional offices in places like state capitals like Atlanta.

And so they started dragging people out and then a series of phone calls were made to Justin Dart and Evan Kemp, who was a disabled and EEOC commissioner.

He's one of the ones on the stage when ADA was signed, you know?

So if you want to know what the experience of feeling vulnerable or if someone's 15 minutes late and I have an appointment and then I got to start the domino fix.

So it was a really, you know, 89, they stopped dragging us out, Bush called and said, Gordon Gray, who was like the attorney general, you know, stop, they have a right to be there.

And DOT flew in and we handed them, Bob Kafta from Texas, handed the language that wound up in the bill about listening on new buses.

And we weren't asking for every other, which is what an organization, the Paralyzed Veterans of America thought we were asking for too much and thought every other.

The paratransit users were complaining that if you do this, we're going to lose our service.

So the this way community on the outside, the average viewer thought we were unified, we weren't.

You know, we were not unified and we're still not with our most unified we've ever been.

But then at that sort of ships and emphasis to getting institutional buys removed from the long term services support system or home to convey service and that that campaign kicked off in 1990 in Atlanta.

There's a great, there's a great movie to watch.

It's called When You Remember Me, Fred Savage of Wonder Years plays a real live person with mustard history that was in the heritage house where Wade was hired.

Kevin Spacey of all people played Wade.

So Wade, Wade blank was way black in the movie.

Now I used to promote that movie until they got a little bit in trouble and then but it's a movie.

It was an ABC special When You Remember Me and we got to premier it at the action in 1990 Atlanta.

Oh, wow.

And part of the reason went to Atlanta was Louis Sullivan, Secretary Louis Sullivan was the head of I think they call the HEW back then Health Education Welfare.

And he was a graduate from Morehouse College.

Plus, you know, you know, getting rid of the institutional bias, which is about a civil right to community living, which we still don't have.

I mean, once we get the Latonya Reese Freedom Act passed, we'll actually have it so right.

But ADA, this is a rights bill, Olmstead, you know, nine years later, you know, move the needle with some but go to go call your state and ask for their own thing playing.

I bet they don't have one.

Our state may have one.

We've we've been in the news a couple of times about our lack of access for individuals with disabilities.

And that's, you know, something we're here in in Kentucky to just starting a new adapt chapter.

And so some of that is why we decided we needed to adapt.

And you said, I think your quote of Wade says the best is, I think you said Wade said it.

We need to have every tool in the tool belt.

Yeah, every every tool in the toolkit.

And until there's an emotional change, no intellectual persuasion works.

And it means when I could take a legislator down to the street corner and he or she could get on and I could we said, does that make sense?

It's called public transit.

Does that make sense?

You know, and then when you get in front of a bus and someone's going to be late to work, rightfully so they're pissed.

But then when they settle down, go, oh, so you don't even get to go to work because there's no way for you to get there.

Then you go, all right, so you're half an hour, hour, couple hour delay is a life learning opportunity if you choose to do it.

Now, granted, you know, Keith, there were issues with the early generation lifts.

Now you find ramps and lower rate kneelers.

There were issues with unions, right?

They were issues with time windows.

How long does it take to load somebody?

Does that delay their bathroom break a couple hours from them?

Because the scheduling was so rigid for drivers if they had a bathroom break scheduled at a certain time in the lift malfunction, then it caused a domino.

So not naive enough to think that, you know, that solved the problem.

What that did was made, you know, writing public transit civil right.

And in that when you have a demand for certain type of equipment, they it's supplied.

And that's why we're going to see airlines where Arthur, myself, others will not have to get out of their chair to fly anymore.

We're very close to happening that happening, Kelly Buckland, who was the head of national council living works for Mayor Pete, I still call him the secretary of transportation and regulatory wise, they've already written it down that that, you know, you know, renovating an existing plane.

So Delta Airlines has already come out with a prototype.

I was reading those articles.

I'm super excited about that.

And it's already published for public comment, correct?

Yeah.

Yeah.

So that's that's for the listeners that don't know the process in changing federal regulations or state regulations.

Once we're at a point where they're asking for public input, it's it's pretty close to the end life of that decision and moving forward with the change.

So that is that is pretty exciting for for individuals who fly.

You know, I think you get you still in 2024 get these misconceptions that, oh, you know what?

I don't think people with who use wheelchairs fly, do they?

I know many professionals who use wheelchairs and travel for work, as well as many friends who, you know, friend of mine is flying down is actually I'm sorry, he is driving to Key West this weekend because he wants to have his power chair and doesn't want the airline to do something accidental.

So instead, he's going to drive 21 hours.

Wow.

And I get that I quit flying.

I flew for a while by myself, which was and then I started flying with somebody.

And then I quit flying.

And I like say lived in Atlanta, you know, when we got married in 81, we our daughter Lindsey was born in 84 and then we moved to Atlanta to be closer to family.

And that's when I went to work in 87 for the Shepherd Center, you know, rehab hospital, where people would bring the spinal injuries and, you know, the Air Carriers Access Act and they charge people like us 50 more dollars to fly because, you know, they needed to help us and our planes, our chairs took up more cargo space.

So on the surface, you go, oh, yeah, they need to do more for you.

And you know, wait a minute, that's the cost of doing business that needs to be spread across all customers.

So the Air Carriers Access Act, a huge thing in our community, we don't believe in ourselves sometimes.

And we can sit around and talk about what, you know, every new house when the parts could have a no step entrance, if we believe it.

And Eleanor Smith started concrete change, retired, ended up being a retired school teacher, ran out of her house in Atlanta.

She's 80 years old now and did that for 25 years.

And so there is she called it visibility, you know, get in the house, get around, get in the bathroom.

You know, you know, lever handles are now more mainstream rocker switches for the lights are more mainstream.

They used to be custom items.

And so, you know, you want to call it universal design, which is Ron Mace, Jeremy gave it, disabled guy architect out of Raleigh, North Carolina, they actually have Center for Universal Design named after Ron Mace.

And then you can call it visibly, whatever the aging community, which I'm part of, because I'm 73, calls it aging in place.

Right.

You know, but you know, it's the same thing as it's right.

And but it makes sense.

Curb cuts help more than just wheelchair.

Yeah, it makes so much sense.

Thank you for mentioning concrete change.

I actually myself and one other coworker went to Atlanta in the early 2000s and were trained in the visit ability concept.

And and one of our coworkers were not my coworker anymore.

One of Carissa's coworkers, David Allgood, always explained it.

He's our he's the Center for Accessible Living's advocate.

And he always explains it as, hey, you know what, I want to be able to come over, stop by for the football game, have a beer, use the bathroom if I need to, right.

And leave.

Right.

Well, it doesn't it doesn't get much more fundamental than that.

All right, Chris would say when I used to go talk to homebuilders or home potential home buyers and go, how many of you like to live in a house that you could resell to anybody?

Anybody could visit.

If something happened to you like it did me 53 years ago, right.

You wouldn't have to spend a lot of money renovating and you could age in place.

But all hands were going to say, well, Mark Johnson running around saying make all houses his way is not the path to change what the path to change is.

If you answer those four questions in the affirmative, when you go to that custom home or to see what you you want your home to be, you go, well, I'm not interested in your house because I can't get to the bathroom door in the builder to set up the food chain.

And they go, well, maybe we need to widen the bathroom door, right.

In all our houses, I don't make it a spec home that requires a custom change.

Make it a standard that you do in all homes.

Oh, that's a great concept.

I wanted to talk to you because you've mentioned the point a little bit about, you know, we're not all united.

I know I hear a lot in my rural area, neck of the woods, you know, I'm just one person.

What can I do?

You know, we're not going to make any change here that happened to the bigger cities.

What would you say to that?

Well, you know, if you enjoy being powerless and go have your pity party.

I mean, when you say I'm nice about it, I go, I don't blame you for being pissed off that such and such not done like in the earlier years, 488, you know, the wire would have a swimming day on Wednesdays at two o'clock, bring your help to get you in and out of the pool.

Right.

Versus when is everybody else.

Right.

Right.

Well, all day long.

So you go, people call and I'm saying, are you registered voter?

Because I know you want to touch on voting.

Are you registered voter?

No.

What does that have to do with it?

I said, well, then do you know you're elected officials?

No.

And I said, well, guess what?

He or she doesn't know you.

They don't know your issue.

Nothing gets done.

You know, it's not a hard connection to make, meaning your legislature, some legislatures meet every other year, but they may go to your local church, they may own the grocery store, they may be the banker and in real change, sustainable change, I don't mean episodic change, which we have a history of real change occurs when that relationship occurs.

And that, you know, there's Mark, you know, how's it going, Mark?

And hey, Mark, what about that inclusive part we just did with the, you know, for the parking rack or hey, Mark, the beach mat or hey, Mark, you know, the pontoon ride to go look at the dolphins or so the young generation, which is cool, you know, the little 19 to 35 year olds who were, you know, born around after a day has basically have a high standard, which is good, you know, but understand the history, understand some of the tactics.

And you can't just write about it on Facebook, you know, you actually because you're sometimes preaching to the choir, right.

And it's important to take your message to the broader audience.

And that's what the Spirit ADA torch relay was in 2000.

That's what the ADA bus tour was in 2015.

That's what the caravan, which only has a couple more weeks of the road, it's in Providence, Rhode Island today, in Hyannis, Massachusetts on Thursday, and then Boston on Saturday, it's the 50th anniversary of the Boston Center for Independence.

That's what it's about is get out of your silo.

Let's come together, because we're stronger together.

And let's figure out who we want the next president to be.

And let's figure out what we want her to do, advise unsolicited comment, right.

But I, you know, Kamala Harris, as a senator, supported the Disability Integration Act, which means she supports Latonya Reid's feedback.

The vice president candidate has Gus, his son is on the spectrum.

I mean, folks, I read that, yeah, yeah, all valuable stuff to note.

But back to the voting, you know, it's registered all your rights to the voter.

But main thing is, too, it's all right, anybody, nonprofit or whatever, can call and say, do you have anybody that works on these issues?

We'd like to sit down with them and hear what the candidate's position on them.

That's totally legal, legal, not illegal, legal, to do surveys and publish the results again.

So I think the caravan, you know, you have my personal history of spinal cord injury, get married and all that stuff, and they have adapt something that I just happen to be in the right place at the right time with the right people, and then groups that have sprung out of that, and now you've got groups like R-A-M-P-D.org, which is artists, disabled artists, you've got FWD.DOC.org, or FWD.DOC.org, which is disabled people in front and behind the camera, Jim Labreck that did help do Crip Camp, all that stuff.

You're seeing new models and centers need to pay attention, they need to pay attention because if they don't, they're going to be less relevant than they already are.

You know, I want to just really quickly go back, Mark, you mentioned, we talked a lot here about, you know, adapt and the ADA and a little bit about independent living, and a lot of that is focused on needs, a lot of it is focused on transportation, housing, in such a way that sometimes I think those of us, those that are not disabled, lose sight that we are, as disabled individuals, humans as well, and we have humanity, and I love that you brought up, you know, now you have these groups, you have performing arts, you have D-PAN, Deaf Performing Arts Network, you have visual artists, you have dancers now with visible disabilities.

Not only is the Paralympics so much more prevalent in the U.S. now, but we have Olympians who are coming out, so to speak, with their disability and are comfortable enough to do that.

So I think too, when we talk about the future of disability and advocacy, it's important, as you said, as much as it is important for the legislator to know me, Keith, who lives in her district, it's also important for us to have those events.

The Center for Accessible Living in Louisville for many years had a juried art show, which oftentimes we had to fundraise for because so-called, you know, funding agencies were worried about numbers of people that had hours of personal care, which is extremely important for our community, but why wouldn't art be important for our community as well?

Why can't we express ourselves in a way, you know, that we're able to?

Three or four areas you hit on it, you know, for me, you don't prioritize, you mobilize.

So if you got people that want to talk about language, which is evolved, if you got people that want to talk about the lack of coverage, journalists, if you got, there didn't used to be Disability Student Service Offices at universities, and they clearly weren't disability studies programs, and all that kind of stuff's in place now, and some of those study programs need to be paying people like y'all to come tell your personal story and engage these students who are 18, 19, 20.

We don't do this stuff free.

I mean, our life experience has given us something that's worth something, and our books are good, our points are good, you know, Laura Hershey's Get Proud by Practicing, you know, or Johnny Crescendo's music out of Pennsylvania, you know, Tear Down the Walls.

I mean, this stuff is all, you know, the world is on fire right there.

You know, whether it's Ukraine or Sudan, or, you know, or Gaza, you know, it's, but you know, I'm a Christian, and my faith's kind of just said, there's a plan, and I just got to do my part.

And if I do my part and everybody else does their part, then you don't get caught up in egos.

And we all like to be think, we all like to be front and center.

We like to get credit.

But you know, we have not been together in 34 years.

We have not, you know, we unified some around the ADA amendments act, and there, the ABLE Act, which is, you know, the accounts, the Center for People with Developmental Intellectual Disciplines.

That ABLE Act really wasn't about us.

It was about some of us.

Right.

So we have an opportunity in 2025 to, you know, there will be a, this will be led March across the Pettus Bridge next July 26, on the 35th anniversary of ADA.

And it wasn't, it wasn't even the Garavan team's idea, it was the National Park Service.

Next year is the 60th anniversary of the March from Montgomery to Selma.

And 60th anniversary of Medicaid, 60th anniversary of Medicare, 50th anniversary of IDEA.

And I tend to be one of those who says, anniversary, you can have a birthday cake and same hat, whatever.

That's okay.

But the main thing you're doing is saying, you know, it gives the opportunity to come together and reflect and plan, strategize and organize.

And foundations now are finding us and are getting to give us more money.

Because we're about more than just direct service, we're about social change.

And that's attracted to a foundation or a philanthropist.

Not that direct services aren't necessary, they're critical.

But you get more direct services by sometimes the social change.

You know, I really don't think they they teach this.

They don't teach young people this.

We don't get a club, we don't get a period on disability history.

I didn't even know about it till college.

So I wish, you know, you said that we were we are a minority, we are a group.

But people don't see it that way.

That needs to change.

Well, Chrissy, you brought up the fact, you know, you know, this individual says I'm not, you know, what difference can one person make?

And you say, there are people with your story and they'll quickly find out how many others have the story.

And you'll quickly come together and want to do something about it.

You know, there's 60 plus million if you look at the census data, it's like one in four or whatever.

And then we all have one or two family members.

And so in some ways, we use the minority mindset to get our rights.

And now the mindset is display justice.

And in this way, justice means it when we accomplish true justice, everybody benefits.

When you talk about poverty, you talk about housing, education, the school to prison pipeline, you talk about LGBTQ plus you talk about.

And so then that that that, you know, I think what you were come implying was, we are represented in all those other minorities.

And together, we're we're really we're the community.

I mean, you know, and I think Keith hit on it was the identity.

You know, you resisted being called disabled and you said it's all right.

People are now going from people first to identity first language.

Folks, I'm not hiding my spot when I come rolling in your room in a power trip.

I'm not differently able.

Right.

Right.

Unless you want to call yourself that too.

And then that's just too cute for me.

And the word special ed special needs to go away.

Yeah, we could every kid needs an IP or individualized education.

Customized learning needs to be the standard.

Yeah, that's interesting.

You said that because I think educators would agree with you, you know, the people doing the actual work because they're doing it anyway, even when they don't realize when they're, you know, you talk to someone and they say, well, I don't know if I can teach, you know, not now, hopefully, but 30, 40, 50 years ago, I don't know if I can teach that individual, you know, with a disability.

But but when you talk to educators, they talk about all the different learning styles that children have, or even the adults have different learning styles than children do.

But some people can't connect those dots that, yeah, everyone, everyone has their own kind of learning style.

So we probably need to make it accessible to everyone.

And that's, you know, that's that kind of the end deal for all of this is where I'm not fighting for Keith to have access to anywhere.

I'm fighting for everyone in my community to have access to everywhere.

Sounds like a good rap.

I won't quit my day job for sure.

Please don't.

Well, again, I could sit here and listen to you all day because I feel like I've learned more in one hour than I have 20 years of disability advocacy, almost.

So thank you for giving us just a little bit of your time.

If you like the podcast, remember to follow or subscribe so you never miss an episode.

If you really like the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts.

That helps more people to find us.

If you really, really like the podcast, then please tell someone about it, either in person or send them an email or just share the link on social media.

Thank you all.

Every bit helps and it makes a huge difference for us.

If you'd like a transcript, please send us an email to demand and disrupt at gmail.com and put transcript in the subject line.

Thanks to Chris Unken for our theme music.

Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Kentucky.

And you can find links to buy the book, A Celebration of Family, Stories of Parents with Disabilities, in our show notes.

Thanks everyone.

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.