Episode 73: Community Is What Will Save Us

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Welcome to Demand and Disrupt. I am your host, Kimberly Parsley.

I'm your co host, Sam Moore. As we put this puppy out, it'll be right at the tail end of February, very beginning of March, and it's finally beginning to feel a bit more like spring out there, Kimberly.

It is. And I've been listening to birds because I am going to do the Blind Birder Birdathon, which is through birdability.

Which bird a thon. That sounds like fun.

I'm going to. I'm listening to recordings of birds and trying to see what all the different kinds of birds that are, are in my backyard. And you go out in, I believe it's May 3rd and 4th or 4th and 5th, and just count how many species of birds you hear. You could do it in your backyard or you could go to a park, whatever. So I'm excited to do that.

So that'll be right about the same time as the derby. And so that'd be a, you know, a good way to sort of double up on spring fun between the derby and the, the Birdathon. Now, we had that. Yeah. As we're recording this yesterday we did a, a cow conversation, which that will be aired. Little teaser at the tail end of March or thereabouts.

Right, Right.

So we had that. Speaking of spring, we had the, the debate on, on our chat of whether or not we were out of the woods as far as snow.

Right.

And I thought we were. I'm sort of leaning towards the fact that we' out of the cold. And I know we've, I remember in 2015 when we had a big 8 inch snowfall in March, but we haven't really had any that late since. So I thought, you know, we're not out of the woods as far as cold snaps, but I, I stuck my neck out and said we were out of the woods in terms of snow. Now, Carissa disagreed with me.

Yeah. And Carissa's right. You're wrong. Sorry, but you're wrong. No, I, I am predicting a snow in April based on nothing but vibes. I am predicting a snow in April.

You're predicting an April snow?

I am.

Well, we'll give you credit. Even if it, even if it doesn't stick or hang around, even if we just get like a few flurries, we'll, we'll give you credit, Kimberly, for a snow, you know.

Okay. But now I'm not taking responsibility for snowing it if it doesn't no, I'm not taking responsibility for making it happen. I'm just saying I think it will. So if it snows a bunch of April, it's not my fault. I'm just calling it, you know.

You're just calling. Yeah. I tell you, in your defense, though, you are not a meteorologist.

Not even a little bit. Nope. Nope.

And so we, you know, we can't hold you totally accountable even though you're betting on an April snow.

I am, but, yeah. No, I just get to throw out nonsense and see if it lands. That's just what I do. Yeah.

Hey, we go with our strengths, Kimberly.

That's what we. That's. That's how it rolls. Yep.

So, yeah. Which, you know, we don't want to be real public about all of our strengths, but, you know.

Yeah.

So we both have a few that we can hang our hats on.

Sure. But I'm excited about spring coming and.

Right. Yeah.

You know, I'm always ready for the seasons to change. I get bored. I get bored easy, Sam.

Well, that's the one good thing. Well. Well, not just one. There's many good things about living in Kentucky, but one in particular is that we do experience all four seasons.

Yeah. Yeah. And, you know, I. I didn't used to like the. As a blind person, I am perfectly fine with more hours of darkness, but.

Yeah, that doesn't bother me either.

Yeah, no, it doesn't bother me at all. But now I find that Biscuit does not like the dark, so. So I'm actually looking forward to daylight savings time so that we could take her for walks.

You do want a happy dog, right?

I do want to have more. More. I want a sleepy dog. I want her to get some of that energy out is what I want. So.

Yeah, so that.

Yeah.

You know, she's more peaceful and quiet. That makes life easier on the whole entire family.

Yes. I mean, you know, I could throw the ball and. And stuff down the hallway, but it just takes longer to wear her out. And also, you know, she doesn't have a real good braking system, so she's just going to come running full tilt in and just barrel right over you. So.

Yeah, that'd be a nice. How do you do? But, yeah, anything to avoid that.

Yeah.

So, speaking of Biscuit, weren't you telling me off there that you have another fabulous story for the ages and the Biscuit Chronicles?

Listen, this week has been just a whole thing. Okay? So. Yeah. And I haven't told anybody this because I. I wanted to tell you, you listeners first I didn't even tell Michael. He came home the day that this happened. It was like, how did things go today? I was like, just don't ask. Just. You'll have to listen to the podcast. I, I, I just, I don't want to talk about it. I'm just going through this whole thing one time. Okay.

So Michael is going to find out about this at the exact same time that I do.

Yep.

And that our listeners do.

Well, you're finding out about it.

Yeah, I'm finding out now a little before this puppy comes out. But otherwise. Yeah.

Yes. You're, you're the dress rehearsal and everybody else. Okay, so I was unloading the dishwasher and unload the dishwasher, and something fell. Like I dropped something or knocked it off in the floor, which, of course, happens all the time.

Yeah, that's, that's pretty, that's pretty typical.

Yeah. A biscuit. On the, on the off chance that what fell in the floor is food, she comes barreling in hell for leather. Right. So to grab whatever thing that was. Well, she did that, ran off. But I was pretty sure that the thing I heard was metal. Like, it sounded metallic. So I was like, I don't know what that was I dropped, but I feel like she can't destroy it.

Yeah. You, you weren't too worried about whatever it was.

No. It was probably like a fork or a silverware of some sort. Yeah. I mean, and I checked, you know, the knives. It wasn't a knife. I was. Because we keep the knives somewhere else in the dishwasher. So I knew it wasn't a knife. Nothing she could get hard on, so I figured it was fine. And so, you know, moving on ahead, life goes on. And then I hear a noise. And this is like a, like a couple of minutes, three, four minutes later.

And here you were trying to, you know, progress. Progress through your day through.

Go through my day doing, doing my errands, my chores. Yeah. And I hear something that sounds like a smoke detector, but which is alarming.

That's a little scary.

Yeah. But not as loud, like, not nearly as, you know, like a smoke detector goes off. You've got to, like, duck and cover. Right. With. Because of the noise, but it wasn't that loud.

So sort of so similar to a smoke detector, but not as loud.

Right. So, but still I thought, okay, maybe it's a carbon monoxide detector. I don't, I legit. Don't know what those sound like, but I know we have them. Right. So I thought maybe it was that So I go through the house, sniffing.

Yeah. Trying to uncover evidence of smoke.

Right. I understand carbon monoxide is odorless, but y' all just bear with me here. Okay?

Yeah. You still sniff just naturally. I think I would, too.

Yeah. Yeah. Just. So I go stick my head in all the rooms, you know, all the bedrooms, the bathroom, everything, trying to figure out what that was. Realizing now, not the smartest thing. Okay, I get that. I understand.

But it's the natural inclination. I understand that.

Exactly. I know this. So I'm like, huh, well, that's perplexing. So. So I continue to walk around. Biscuit comes running up to me like, oh, what are we doing? What's this new game? And I'm like, you know, I don't know. So I go back in the kitchen. I'm like, I think I'm going to make myself a cup of tea.

Sure. Yeah. You got to have your tea on a daily basis.

Right? Right. Because when in doubt, make a cup of tea.

Yeah, that's it. When. When you're not sure of how to react to a certain situation, and you just got to stay calm, grab the tea.

Right. So. So I was making a cup of tea. Now, Sam, do you know what a say when is.

I think you and I've talked about them off the air for. I'm not totally familiar with them, but I have heard of.

Okay, so I say when is like it's little thing. And you put it over the side of your cup, and when the liquid fills up to the point it, like, sticks down two little prongs. Yeah, it.

Yes.

Be it. It. And so I can see where I'd

have use for, you know, one of those. But I. Up until this point, I've just not had much problem with sticking my hand at the top of the glass. Well. And.

Yeah, unless it's. Unless you're doing something hot, like making tea, or you have a company you don't want to stick your finger in, you know, your company's cup. So they're good to have around.

True. Yeah.

Not 100% necessary. So. So I. Well, I'll tell you what they sound like, Sam, because I've got one right here.

So let me get an on the spot demonstration.

On the spot demonstration.

Love it.

Let me see. Okay. Do you hear that?

Yeah, I heard it. Barely.

Okay, well, in case you didn't hear it, let me tell you what it sounds like, Sam.

It sounds like a little beeper zoom. Like, we were. Like, we've talked about zoom. Does a good thing of, you know, blocking out background noise, Right?

It does. So you might not be able to

hear that, but we kind of worked against us in this case, but yeah. Give us a description.

Well, let me tell you what it sounds like, Sam.

Okay.

Sounds kind of like a smoke detector, but not quite as loud.

Yeah. Softer than a smoke. Aha.

So is it all coming together now?

Suddenly, I have my thoughts.

I think I have found out what fell in the floor.

Was it the say when?

I believe it was the say when, because I can't find the say when. And so I'm like, aha, Biscuit. And so I go in the living room, and I'm like, okay, where is it? Well, so I hear the same sound again. This time, the sound is moving. Okay. The sound is running away from me. That's the sound.

It's dissipating.

It is dissipating.

Something farther and farther off.

Right. So we have confirmation. The thing that fell was this. And this is my life, y'.

All.

This is what I deal with every day.

Something similar, too, dud. Yes.

Every day, something very like this. Yeah. So we have, I. We have determined that what fell is the say win. And it is, in fact, in Biscuit's mouth.

Okay, that's where I thought you were going.

Yep, yep. We know exactly what's making it beep. And it is dog slobber, y'.

All.

So.

So Biscuit is activating it with her mouth.

With her mouth. Yes. So. And I'm trying to find. And the thing about my dog, the thing with most dogs, I suspect, is chase them. They will run.

Yes, I, I, I believe it.

So there is no getting it away. No getting this away.

So the harder you try to catch up with Biscuit, the faster she will run.

The faster she's running. Yeah. The. The more she thinks we're having the best game ever. So I go to get a cane. Because sometimes, and I'm sure you've experienced this, the only way to find a thing is. Well, number one, I had to walk away and pretend I wasn't interested, you know?

Yeah, you had to kind of make her think that you were heading the other direction, Right?

Yeah, she has to think, I'm not interested. And so that did that for a little bit. And then you have to go get a cane. Well, something long. And so a cane serves the purpose. And, like, sweep it along the ground to try to find a thing, right?

Yeah, yeah. You're sweeping back. And sometimes that is the best way to find what you can.

Yeah. Like. Like along the ground. But think of the motion of like a windshield wiper. Right. You just gotta sweep in these arcs with the cane flat down, horizontal on the ground to try to find a thing.

Yeah. Sometimes that is your best bet.

And so I did that and I did that and I did it and I could not find it.

So you swept and swept and swept

and swept and I could not find it. And so I was like, you know what? I drink a lot of tea. I drink a lot of tea and I drink a lot of coffee. And I did not want to destroy the say when. I did not want Biscuit to destroy it. And also, I don't think that she could get hurt on it. I really don't. But it does have a 9 volt battery attached to it. So she's not one to eat things. She normally just tears them up. But, you know, I still worried. I'm like, this would be the thing that she would eat, you know, So I didn't want her to actually ingest this. So.

Yeah, yeah, yeah. Just to be on the safe side. You didn't want to swallow.

Right, right. I mean, she's a turd. Okay. And she's pissed me off at this point, but I don't want her hurt. I don't. I don't want anything to happen.

No, you love her too much.

You know what?

You don't want to see your suffer.

I do. Right. So I go put on my Meta Raven glasses and. Which I fortunately have a pair of. And I call Be My Eyes, which if you don't know, you probably do. Sam, anybody who doesn't know Be My Eyes is a service that you can call on your phone and.

Oh, yes, yeah, we've talked about that off air. And I think, yeah, yeah, I've had other people tell me about it too.

It's free. And you can connect with a volunteer live representative. Live representative. If you're using a phone, they will have something in their app. In the app, like they take over the camera on your phone so that they can find, you know, you like wave your camera around and they help you do whatever, finish your tasks, whatever. Whether it's, you know, what's this box of stuff? How do I cook this? What are the cooking instructions on this package? Or in my case, they were using the camera on my Meta Rayman glasses. And it was, where is my say when?

Right, so, yeah, you. So you were asking your rep. Yeah, where's my say when?

Right. So the guy answers the phone and I explain and he says, okay. And so I'm like, okay, can you find. And I said, I said, this little thing. I said, it'll have a battery attached to it. It's got two little prongs. And he says, what color is it? And I said, I don't have any idea.

Yeah, that's. I'm totally blind.

That's not something I can answer. No. No idea. And he says, okay, well, we'll look around. He says, oh, I see your dog. So he sees the dog. Yep.

That was a start.

Right? Looking innocent, like she hasn't got anything. And then so we do this whole thing where he's like, okay, walk around, turn to your left. Look over there. He says, oh, okay. Oh, I think there's something red over there on the floor. I think there's something. He said, go a little bit to your. Your. Your left, a little forward. He said, oh, the dog just grabbed it in her mouth and goes. So. Yep, dog's got it.

Okay, so now you know that the dog has it again.

Yes. So dog had it again. And so what had to be done was I had to get a treat to lure Biscuit into her crate.

Oh, yeah, yeah. Whatever it takes.

Yep. Had to put her in the crate and then go back out all over the. Like walking around the living room, looking at the floor, with my head tilted down, looking at the floor. But eventually we did find the say when. Yay.

With the help with your courteous representative from.

From Be My Eyes. Yes. I wish we had that, like the applause, you know, Yay applause.

Yeah, we need some. We need some canned applause, though.

Yes, yes. So, yeah, that is after all that

you find you and. And this friendly assistant that you got on the phone finally were able to locate the say when.

Yes. Which I. It was in good shape. I then sanitized it with rubbing alcohol.

Yeah. In her mouth after.

Been in her mouth and everything was fine. And I did have a cup of tea. And then that was it for that day.

And the tree, the treats lured her back in her crate and she finally, you know, disposed of the say when.

Well, yeah, yeah, yeah. We had to get the. Get her in the crate so that the they say when could be left

because without her getting it back in her.

Right. Because. Because she really liked this game.

Oh, really like this game. So, yeah, I'm just. I'm just waiting to see what she puts in her mouth next.

Don't jinx it. Trust me, it is.

I mean, you're probably going to have another story for us in two weeks, I bet.

It is just. It is just always something.

Always something.

Always.

Yes, indeed. But. But yes, you were. In that case, Kimberly, you were sort of. You were sort of like an advocate for yourself. You know, you called Be my eyes and you, you said that you needed assistance finding a say.

When I did, I was advocating for myself, which. Look at you go with the segue again, Sam, I tell you.

And our.

They.

Our guest is. Is centered around advocacy.

She is. She is an advocate and she is. And a disability activist. She is the co founder and director of the Independent Seekers Project in Louisville, and her name is Amanda Stahl, and she was a delight to talk with. And I learned so much about advocating and the perils and pitfalls, what to think about. So, yeah, and I talk with her and you all are going to hear that interview now that I'm done gabbing about my dog and.

Well, an advocacy is something that, you know, everybody with disabilities is at least somewhat familiar with. The practice of advocating, no doubt, because. Yes, it's a must. I mean, no, I know we would. We've alluded to this before, but in college, you had to. And I had to, Kimberly, advocate with each and every professor about accommodations that we need in each class. We give them our letters of accommodation at the very beginning and make sure that they sign them and, and that sort of thing. And, you know, even, even outside of class, you know, you go to the cafeteria, the food court, and you, you know, if you didn't have a buddy or anybody with you, you go up to the cash register or whatever and you tell them that you needed assistance going through a line or getting to a certain location, a certain restaurant in the, in the food court and ask if, if they personally or somebody else could. Could provide assistance. So you're, you're using advocacy a lot of times when you don't even think much about it.

It's true. It's true all the time. And advocacy fatigue is, Is real because you get tired of.

Yeah, that, That's a thing because, you know, you wants. And most importantly, your needs and, and when, when you don't get the, the results you want or you don't get your needs met in a timely manner, that can definitely be disturbing.

This happens to me a lot in, like, medical settings when I go to get scans or see doctors, anything, and.

Oh, yeah, healthcare venues.

Oh.

So. And. And it's always just like, well, can you just, you know, can you just.

Yeah, yeah. It's almost like they're trying to find a workaround, right?

Yes. Yes. It's like. And so to every healthcare worker is you. If you have to say, can you just. Can you just. The answer is no, most likely. And yeah. And also, you're the one getting paid to be here, so maybe you figure it out just this one time right now.

I know I've heard you say that when you, you know, when you're a patient in a hospital or whatever, or, you know, just a. Another healthcare setting, a lot of times you will have them. You'll have them post a little sign on the wall out front of your room saying, you know there is a visually impaired patient in here, right?

Yes. And that's if I'm an inpatient and you're an inpatient. Yes, that I, I have. That has never done me wrong. I mean, nurses always serves you well, hadn't it always. They see that. They're like, okay, I know how to proceed. And a lot of times I wonder if they see that sign and they maybe wait a minute before they come in, think about what they got to do, how it might be done differently. I mean, it is so helpful.

But given certain adaptations they may have to make.

Yeah, but given that that's not tattooed on my forehead and it's not just in, you know, the part of the chart that most people look at, almost always a tech or somebody is always going to say, well, can you just sit up for this test instead of lay down? Or can you just hop up here without a stool?

You know, you always sort of cringe, I'm sure, when you hear the three words, can you just. Or can't you just.

Yeah. Can't you just. Yeah, it's horrible because. But yes, they're asking me to make their lives easier, not make my life safer.

Yeah, they're trying to find the compromise, which sometimes there's just not a real good compromise.

No, there's not. There's. There's. There's my safety, and that has to come first. So advocating in healthcare settings, that's important to me. And of course, like you said, the education setting and I mean.

Yeah. And, you know, there's a lot of different. And even we talk about this a lot of times during election season, too. Like, you know, we have to advocate for the assistance that we need at the polls and, And.

Right.

You know, allow them to help us with, you know, specialized voting equipment and machines that. That make our lives easier to vote. So, you know, there's. There's a variety of settings and means by which it's important to advocate.

It is. And there's those individual advocacy, and then there's also systems advocacy, which Is, you know, having a system that works to make sure that people with disabilities are able to vote and we don't have to go in ready for a fight every, every May and November, you know.

Yeah. Anytime. Anytime a fight can be avoided, it's always in not only the, you know, the individuals with disabilities best interest, but it's also the poll employees and the pole volunteers. It's in their best interest, too.

You're advocating peace. I love it, Sam.

I love it. Advocating full advocacy.

I love it. I love it.

So, but anyway, that's, that's why Amanda is such a fitting and, and timely guest.

Yep, yep. And she's just so smart. She's a social worker, so her, her whole training is finding solutions to problems. And so that's what a good advocate does. Yes, yes, indeed. So.

Yes. And if you all want to suggest other guests that, that know their stuff, you know how to do it.

Ah, you're going to tell us, Sam. Tell us how.

All you have to do is send a simple email to demand and disrupt mail.com. it's all one word, lowercase and that sort of thing.

Awesome.

And we love hearing from our fellow, what we call them Disruptors.

Our disruptors. Yep.

Fellow disruptors.

We love hearing from y'. All. So reach out.

Reach out. Yeah. Questions, comments, suggestions? Lay it on us.

Criticisms? Do we take criticisms?

We're pretty thick skinned. Yeah. Just, just be reasonable about it, you know, don't be so.

Yeah, right.

Well, yeah, we'll be so hardcore with it to, to the point that, you know, you're gonna quit listening all together.

You know, Sam has very delicate feelings, y'. All. Very delicate feelings.

I've got a tender heart, you know, I'm thick skinned with a tender heart. I've got a happy medium there. So, you know, you got a criticism, bring it. But maybe find a happy medium with your criticisms.

There you go. There you go. All right, gang, thanks for joining and listening to all our conversation here at the top. And now you're going to hear my wonderful interview with the amazing Amanda Stuff. Today I am joined by Amanda Stahl. She is a social worker and the co founder and director of the Independent Seekers Project. Welcome, Amanda.

Hi.

I'm so excited to be here.

I am so excited to have you. Ever since I started the podcast, your name has come up as someone that from countless people about someone I needed to have on the show.

So I hope it was all good. So good.

It was so good. Amanda, tell me about yourself.

My name is Amanda. I'm from Kentucky and I'M from Ma. Kentucky, which is like a little. Like, it's unreal. I remember the closest city is really like Cincinnati than when I was a kid, and we really wanted to go shopping and have a nice. Have a good time. We would actually have to travel to Cincinnati. Ticket to the closest mall. So. So. And I grew up with four siblings and the second oldest of four. And then after that, I've been disabled all my life. I have a developmental disability. I'm a wheelchair user. Throughout my life, I was the only person with a disability in my classes, which I think is what makes me a good advocate, because I had to. Like, I had like. It was only me that could advocate for myself. But my mom was probably the one that, you know, she been telling me stories now about her having to get a lawyer to be in, you know, and I'm. And all the meetings that we had, like, in all the IEP meetings, we would have to have a lawyer be in those meetings with her and my dad making sure all my rights were protected. I remember once when I was in. When I was younger, in like the early 90s, this is right after the 88 was pass. They would not accommodate me during my class, my. My test taking. So I ended up failing the test because of the factor of accommodation. That's why it's important for. For people to really advocate for what your rights are. Because we're. You're smarter than people think we are, so.

Absolutely. And you said you have how many nieces and nephews now?

I have 13 nieces and nephews. Little brats everywhere, little kiddos everywhere. They range between the ages of like eight months old to, you know, 15. So, you know, so it's. It's good when some are in diapers and some are driving. So.

Wow.

And see. Do you like being a part of a big family?

I do because I feel like. I feel like the community that we are in. That is what's gonna say this. No, like, no, like Medicare, no like waiver program or anything like that. Us as a community. It doesn't necessarily have to be your, like, blood family or anything. Like that's why friendships are so important in our work, is because that's. That's who saved us. Not, you know, not the state. So.

Yeah. The community. That's what will save us. I think I'd like that on T shirt.

I. Yep. That would.

That would be awesome. And I understand you have a fiance.

Yeah.

And would love to get married, but can you tell me a little about some of the roadblocks to that.

Yeah, I would love to get married, like legally married to my Beyonce, but I can't because of the marriage penalty for people with disabilities. Because it. Because I. Because I am a water user and I need help with daily tasks like bathing, dressing, toileting, all that stuff. I need caregivers from the state to come in to my home, and they help me. They don't help me all the time, but majority of the time. And if they're not there, then my. My partner has to do it. And because I'm on this waiver system, they can cap how much money I can make. This waiver system came about after the Olmstead decision of 1990 that said people with disabilities have the right to live in the community. But there's still so many challenges around that in. In our disability. In the disability community, because it's. And one of those challenges is that you can only make so much money and stay on your benefits. And so that's why I can't marry my fiance, because we would make too much money and I would lose all my help. Right.

And I think it bears repeating that nobody is getting rich off of Medicaid. Right?

No. And, yeah, I think Medicaid America, like I said, doesn't do all the help we want. Medicaid itself won't save us anyway. It is like the bare minimum to help us live our lives at all, you know?

Yeah. And. And Medicaid being disabled is so expensive. And we've had people on talk about just the cost of. Of equipment and wheelchair maintenance and. And things. And that's what we're really talking about is a lot of people, the only way they can live, like, the only way those medical supports are there is through Medicaid. And that's really the thing that people can't give up. It's not the vast sums of money that Medicare or, you know, Social Security is paying, it's those medical supports. Am I right?

Yeah. It costs $72,000 a year for my caregivers to come see me every day and get me up every day. And I don't have that kind of money just sitting around. I would have to make like a hundred, 100 over 100, over $120,000 every year to be able to support myself. Right. And I'm a social worker. We don't make that type of money.

No. No, they don't. And community, like you said, is something that you're on, you're not only like a part of, but you're building community. Community for people's for people through the Independent Seekers Project. Right?

Yes. His we built. We have 60 people that we work with every week through like our support group network, which is, I am one other organizer goes. We go into like different day programs that people with disabilities go to during the week to spend their days. And these day programs, our Medicaid funded day programs, do we make a conscious decision at ISP not to become a Medicaid provider? So we are not, we don't get our funding from Medicaid so we can advocate for more, for better and more effective services for Medicaid when we're not providing those services. Okay, but we. So we're building a community of people that care about each other. And then on top of that community, we're building a political movement called we are the voice to help change those Medicaid. Those kind of Medicaid regulations that affect everybody on Medicaid, like how, how much physical therapy you can get, how many hours of caregiving can you get a week? And all of those, those are state regulations that are made up by the Department of Medicaid Services. And so part of our work is advocating for better regulations around it. And so it's more, it helps us get more freedom and it helps more people to get on the program because there's so many people right now that are not on that are on the waiting list for these programs.

So, so tell me, the Independent Seekers Project, what it is, who it serves?

We, we, we. It's created for and by people with disabilities. It's going back to the disability, what was first started under the disability rights movement. But we take a more intersectional, intersectionality framework and we say we're just going beyond accessibility and trying to transform the world into something different and not transform ourselves because we're, we're fine the way we are. You want to challenge the world to change itself, right? Because that's what's ableist is the world. So we work on advocacy, mental health and education. Those are our three focuses at the isp. And like I said, our biggest project is working with our support group network. And right now we, we work with three, three day programs. We have five support groups a week with folks trying to help them understand the world and understand themselves.

And how many people total does that encompass?

Around 60, which is pretty good junk. We're trying to get into schools so we can work with young people between the ages of 14 to 21 to help them so they don't get stuck in the Medicaid bubble when they get out of school so they have more opportunities for themselves. Because our mission and the seekers is to inspire the next generation. I'm disabled activists, which is, you know,

and so those meetings, you said they take place at three different locations, is that right?

Three different day programs around the city of Louisville. But we're hoping to connect with, with the organizers and activists around the state that can start their own groups around the state and so we can build some political power around this, around the

state who might be interested in those.

Well, those meetings are. Those meetings are for people that they go to those day programs every day. I don't know. These are for people with intellectual and developmental disabilities, which is like a big part of a gap is where. I believe that was like a gap where we need to organize the most impacted people with disabilities, which are the people with developmental and intellectual disabilities. And a lot of those folks have their guardianship or have to have another person speak on their behalf. And so like, so that's why we target that population. And that's where ISP started was at a local day program. And these day programs are there, help train people for job readiness. But a lot of people just stay in the day program because there isn't much option for them after they get out of high school. And so that's why we want to work with people that are younger too. So they know that the world is much bigger than they think it is.

Yeah. And. And you are one of those people who decided the world was big and you wanted to know all about it. So you went on to. You've got your degree in social work, right?

I have my. I have my bachelor's degree in social organ. I also have my master's degree in social work and I match trained at lchw. And so that means I can do clinical counseling in group therapy. And. But our, but our advocacy groups are not therapy. They're advocacy where people can talk about their experiences. But I do use my techniques, some clinical strategies in those groups, but they're not like clinical groups and they'll. And I'm also trained in trauma based counseling. So a lot of people with disabilities are. A lot of. Are. All of us with disabilities have experienced ableism, which is a, which is, which is being treated differently because of being disabled over and over again, which can be traumatizing after a time. So that's. We do. We are trauma informed when we do our work with our participants because a lot of our participants live in group homes and have experienced highly negative situations.

And one of the things you said before was that all the work you, you do is through the intersectional lens. So can you tell me a little about that?

I mean, like, what we're really talking about when we talk about, like, the state or like the government controlling who, like, if we can get married. The government controlling how much money we have or what kind of job we have. We're talking about they're controlling our, our bodies and where we are. And so, like, it's all about body autonomy and that. And that could be that the intersection. That's a way to be how, like, connected. Like, women's rights are connected to disability rights and like, racial rights are connected to disability rights. We're not, we're not. We're all kind of, kind of connected together. Like the state through, like the Medicaid is controlling where we live. And they do that with women telling them about what they can do with their bodies, you know, So I feel like it's all very connected, and that's a little different than in the past generations of disability, Disability work. It wasn't, it wasn't. They, they, it was mainly run by men and older men and not run by women as much as it should have been. Or in now I hope that in from my generation there isn't more intersectional ways. Really think that, that, like, injustice anywhere hurts everybody, you know?

It does, Abs. Absolutely it does.

Sorry.

One person's injustice is injustice for all of us.

Yeah.

If not now, then eventually.

Eventually. And we can really see that in our world today. So.

Absolutely. So tell me about what, what is the difference between advocacy and activism?

It, There isn't really a difference. I don't think there's a difference. I think activism has a little bit more of a radical spin on the word of, like, we might get arrested today. And advocacy, is it more like more, more of like a, more like more of just more acceptable word and some rooms than others. So I don't see a big difference between the two. But sometimes the activism makes people more come uncomfortable, you know, so.

Have you ever been arrested?

I have not, but I've been in front of someone that was arrested and in one of our protests, but he was afraid that I was gonna get arrested, but I did not get arrested on that day. And, and so I've never been arrested. I, I, I really thought about it during the times that we're living in, you know, doing civil disobedience is a really, could be a really important statement for people to see that, but it's really, really dangerous at this time in history. So if you're gonna do it, you need to know what your rights are and what. And have. Have the people around you to, like, support you through that process of being arrested. But I've been to plenty of protests and plenty of actions, but I've never been arrested before. But.

But you've been prepared to be, Right?

All right. If I get arrested, I would want to get arrested with my caregiver, and that is the right decision that I've had with.

Yeah.

One or two of my caregivers before.

I've never thought about that. Amanda. I've never thought about that. If you get arrested. Yeah.

He's gonna take me to the bathroom. I would not dress, though, you know.

Right.

To do that.

Right, right.

These times, it makes me think of, like, adapting what they have done, you know?

Yes.

And we need to turn and be that political. And I think isp, we're getting to that point where we can start to be that political if we need to be. So, you know, do you.

Does ISP and gay isp, being Independent Seekers Project, does ISP engage in direct action?

We did. We haven't yet, but we have talked about it. Now, we just had a meeting about that. Just not that long. Like yesterday, because. Because of the. The rate hikes in Mobile around the Tark, they're going up again. Our public transportation rate are going up again, and it's ridiculous for folks, really.

Huh. And is. Is that a. Is that a situation that impacts a lot of the members who use isp?

Yes. I mean, they're proposing our. The. The rate hike to be up to. It's like four and four dollars and 50 cents per trip to go on the Tark 3, which is our paratransit, which would it go from. It goes from door to door, servants, and that's just one way. So it costs people $9 just to go on to the grocery store.

And if a person worked every day.

Yes.

That's.

That's a. That's. That's a big. That's a lot of money. And a person that's on disability, that only makes a thousand dollars a month, That's a huge amount of money. And so we're trying to. To figure out ways to be disruptive to try to change that. So.

Yeah. And this is what we're talking about when we talk about the cost of disability, Right? Yeah.

The disability tax is very high.

It is. It is very high. And it's not like you can, you know, if you're in a. If you require a wheelchair, it's not like you can just carpool with a buddy and go to the same job. Those are not options.

Nope. And they're raising the TARG rates for all the TARC, but they're rating TARK 3 rates even higher because I think we know that people rely on Tark 3 more than the other Tark, more than the regular TARC bus.

What's the difference between Tark 3 and the regular Tark?

The regular talk is you have to go to the bus stop and they don't. It's not door to door. You have to go to the. You have to go. They drop you off at the bus. Different bus stops and things like that.

I ask because everyone in Louisville is familiar with TARC and TARK3 and all these things. And I started doing this and people kept mentioning that, and I was like, I am embarrassed. I have no idea what they're talking about. Because here in Billing Green, we got like, almost nothing.

So you guys don't have anything?

I think just in town in a very narrow, very small area there. There is kind of a paratransit bus. I have never talked to anyone who thought it was really a glowing and amazing experience. It's something I probably need to educate myself on more. But I live. I live in the county, so I. It's not coming out here where I live.

Yeah.

So.

And that was one of the big things that I get. DAB wanted to. That was the biggest push for Adapt when I started in the 60s and 70s and 80s. But it's like public transportation for everyone. And. Yeah, we're still not there yet.

Hard to believe, isn't it?

Yeah. And like. And I've been saying, like, I don't blame the generation above or like, above me for, like. For like not pushing this, the movement more because they got like the 88 with huge and all these. And it's like. But now we're having to fight all these fights again. And. And. And to protect our rights as disabled folks. Because if we don't bite, they. They slowly take them back.

Right? Little by little, they.

Yeah, everything. We hope we don't notice it either,

right? Yes. Yes. They hope we don't notice. But that's why we have to pay attention. That's why we do this podcast. So that's why we talk to you. You know that it's the community that you talked about at the top. Community is what will save us and adapt Ky. I mean, Kentucky's just brought together a new ADAPT chapter here in Kentucky.

Yeah. I was. I helped with that getting started and awesome. Yeah, I like one protest, but I wanted to tell folks, like, there's other ways to. Not everybody can protest and do direct action and feel safe. You can contact your, your legislator, you can call people, you can have conversations just like this one. You don't have to like, you can organize your, your brain group, you can go take a nap. Resting is a, A sign of like resistance because our world wants us to always be doing something right.

Right.

So I feel like. And not everyone can do the sexy thing with like going out and protesting or, or like, or the plushie thing or the thing that'll get Instagram clicks or whatever. But. But just being aware and sharing your story with one or two people build it up to something really big. So that now.

No, that thing. I was just going to tell you that is so well said that we all have something to contribute and as long as we're thinking about other people, we're thinking about community and we're moving forward in some way. That. That is activism. Yes. We are acting with the whole in mind. And that's what activism is.

And because I, I was meeting with my, the group today and we were talking about Tark and one and two of the people were like saying like, I have Tark and Malago. That was there. I said, I don't have dark. You know, this has nothing to do with me. I was like, you care about your friend over here, then it does have something to do with you. You know, and you, your voice gets bigger, your voice gets louder. And the more people you connect with,

you know, I, I think a lot of activism and a lot of. Honestly, just being in the world right now just seems hard.

Yes.

So it's easy to go inside and stay in your bubble. And hey, I get that. And some days that is what you have to do and you have to take care of yourself. But I also think to anyone who hasn't done any kind of. Not just protesting, but any kind of activism at all, once you show up with one other person, just two people get together, two write a letter, whatever, suddenly it has gone from something hard to something manageable.

Yeah. To something. Yeah. And totally agree with that.

So it, it sounds like work and it is work. But it is also fun and it is. It is also meaningful.

Meaningful. And then it connects you to something bigger than yourself. And then that's when you start to heal from the herd of the world.

Yep. That's it. Exactly. That, that, that's how, that's how you, you find a purpose and you keep moving forward. You keep moving forward. And if you're doing that, if one person is doing that, you're bringing other people with you. Whether you know it or not, you're bringing other people with you. And I think a lot of times we're made to think that it's harder than it really is to keep us down. To keep us down.

Yeah.

So, Amanda, tell me, if someone's listening and they want to find out more about the Independent Seekers project, what do they do?

We can go. They can go to isp. The Seekers is our. Is our social media handle or independent seekers product.org okay. Again, non for profit organizations.

Awesome. I will put that in the show notes. And you all have an office in Louisville, right?

Yeah, we are actually. We are. We. Our office is part of the Louisville Pride foundation and we are starting an intersectionality support group with one of our lead organizers in March that will talk about intersectionality and disability. Because like I said before, like, intersectionality is really important to me and to our mission because we're just not disabled. We're all the other identities that we carry in. And when. And when we come to our. When we go to. When it comes to our work, we need to advocate for everyone and not just a part of ourselves, but for all of ourselves.

Excellent. I think that is a great place to end. And I will put those links again in the show notes for everyone to find out. Amanda Salt, it has been great talking with you.

You too. Have a good day. I'm excited.

Thank you. Demand and Disrupt is a production of the Advocado Press with generous support from the center for Accessible Living, based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley, and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Ankin for the use of his song Change. Don't forget to follow or subscribe so you never miss an episode and please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out and let's keep the conversation going. Thanks, everyone.

Just for once I think I would agree. We both know there's a difference We've had our curtain calling this time the writing's on the wall. This war of words we can defend. Two damaged hearts refuse to mend. This situation's pointless with each and every day it's not a game we need to play. Things better Repair and rearrange things but each and every letter spelled out the need for us to open up our minds and hearts to change. Then what will be will be Disregard for good to set us free. There's just no way of knowing if love lives anymore we turn out the light and close the door. We try to make things better Repair and rearrange things but each and every letter spelled out the for us to open up our minds and hearts to change.