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

Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.

And I'm your co host, Sam Moore. Now, don't tell anybody, Kimberly, but I am, as we speak, on my not second, but third cup of coffee.

Wow. Listeners, you're, you're in for, in for quite a show here, let me tell you. We're bringing some different energy to the show today. Yeah. So y' all will just find out. You'll just find out.

You're just along for the ride, whatever happens.

My interview today is fascinating interview I had. It's a Cal conversation that I had with Keith Hosey, roving recorder, Keith Hosie and Carissa Johnson, who we have newly designated to be our disruptor in chief.

Disruptor in chief.

Yes, yes, yes, yes. She's got an official title now and somebody's gotta be. There you go. It's her. It's her. And we are going to talk about disability identity and representation. You know, Sam, you and I are going to talk about that some here in a minute too. But you know, I think next time that we do a Cal conversation, I'm going to kind of rope you into getting on there with us. What do you think?

That, that sounds good to me. You know, we could have a little, a little four way pow wow. And you know, I have had, the last few times you talked to Keith and Clarissa, I have sort of had the FOMO thing going on. You know, so.

Poor Sam, you know, is, is four people too many. That's not too confusing, is it?

Four people think so. I mean, you know, we like I tell you off the air, you know, we wouldn't want like 20 or 30 people on the zoom. That would create chaos. But.

Right.

I think, I think we can pull off four.

I think we can, I think we can pull off four. I think we'll, we'll have you join us next time and we will have some, some super fascinating topic that you can contribute to in some way.

It'll make me feel real official being on a quote unquote panel.

There you go. Yes, yes, the, the demand to disrupt panel. We'll have an important conversational topic like have you had any Skittles yet for Hal?

And if we were doing that conversation today, Kimberly, that would be. The answer would be no.

No Skittles yet.

I'm craving them and I definitely, the closer we get to Halloween, the more Skittles I will intake or in hell, I guess is a better word.

We. I had just decided that we were going to not buy because in our neighborhood, many of the kids have grown up, so we don't have that many trick or treaters. So a small, you know, bag of candy would suffice. And yet I still buy that, you know, big three pound bags of, of candy for just in case.

And, and it never goes to waste, I'm sure.

No, it's not just in case. It's just for Kimberly.

Yeah.

Yeah.

And Michael is diabetic. And so I thought, you know, we're just not going to get any candy this year. We're just not. We're not going to get any. It'll be fine. Healthier, all the things. And then this was yesterday and the very day Sayer comes in from school and she says, mama, we're selling candy bars for the band. I gotta sell 30 candy bars.

Oh, no.

You hate not to help your daughter, but you really, you know, Michael being a diabetic, he's trying to steer clear of the whole chocolate thing.

So there are 30 candy bars in this house.

Oh, you just went ahead and bought 30?

No, they're just here. She's just got to sell them. But they're here.

She's got to sell them. You're going to buy at least a few of them, though. I'm sure they're.

Michael said, can we just buy them all so we don't have to fool with trying to sell these things, we just buy them all. And she said, well, they're $2 a piece.

You know, that's a $60 investment, but.

Which I would feel compelled to eat. You pay $60 for it, you got to eat it. And then. I don't know. That seems wrong. Last time we talked about it being. And it's still October, National Disability Employment Awareness Month.

Right.

I've been thinking, Sam, if you weren't disabled, would that have changed your sort of career trajectory?

Well, you know, I, I can see myself having a similar interest in. Of course, podcasts weren't a thing when I was growing up. They hadn't even been fathomed yet. But the whole radio communication, running my mouth type of thing, I think I still would have had an interest in that as I, as I did being somebody who was. Was blind since 7 months old. But, but I will say this. When I was, when I was four years old, I was at a, I was at an arts and crafts festival for people with disabilities over in Evansville across the river, and it was at Angel Mounds. And I remember Channel 14, one of the local news stations was there doing a feature on it. And they interviewed me and my mom and some of the other kiddos and parents that, that were there. And at the end they asked me what I. What I wanted to be when I grew up. And you know what I told them, Kimberly?

What?

I told them that I wanted to be an astronaut.

Oh, okay. Well, yeah, that sounds good.

So I guess, you know, I, I just had the. I just had the crave of adventure at the time and wanted to get as high up in the air as possible, but.

Well, yeah, now that's, That's a fairly common, you know, thing for a kid to want. So. Do you think that would have. Did that stay with you at all?

No. When I was in middle school, high school, I don't remember the desire to go into space as much, but at least. Or maybe I, Maybe I just heard one of my fellow preschool peeps say astronaut, and that just sort of inspired me to say it. But looking back, I still laugh at that because, you know, there for a while we even. We had a DVR of it because we taped it that night that mom and I were on the news.

And.

Oh, and me saying that we don't have the video anymore because pretty sure when we upgraded to the DVD player that was one of those we got rid of. But of course we could have converted it to a dvd, I guess, if we were just dead set on keeping it. But we. Mom and I still laugh about that. Me saying that I wanted to be an astronaut when I was four.

Wow. Huh. I don't know. I don't remember. I mean, I've always wanted to write. I've always liked writing, so I think I probably would have done that. You know, what I would do now is I really would. I would have liked to have been a barista.

A barista?

Yeah. I would have liked to. No one, I mean, I. There may be people who are blind who do that.

Yeah, I'd have to look that up.

You know, I bet there, I bet there are and I bet they do it. Well, I do not think I would do it well, especially not with, you know, the other, you know, the balance issue and, and thing like, things like that.

Well, and I always feel sorry for the, the, the Starbucks folks because they have to, you know, they have to listen to so many specific instructions on the drinks, like, you know, sweet cream, four pumps of sugar free vanilla, and, you know, soy milk and low fat milk. Yeah, they have.

Right. Yeah.

All those specifics to remember for people And I could see where that would get real confusing real quick.

Now. I'm pickier about coffee at home, actually. I'm pickier about when I make coffee at home. I'm picking pretty picky about how that gets done. But that's probably just because it's me or Michael making have more control over. Right, right. I, I feel free to. To, you know, fuss at my husband about, you know, I believe I said the other day, did you use coffee that was out of date? He was like, no, I didn't use coffee. And I was like, I'm pretty sure you did. I'm pretty sure you did. I. I have a refined sense of taste. Okay. I don't think this is a blind thing. I think it's just a Kimberly thing.

And I was taste a little stout. Like it was old.

Yeah, it just tasted stale. It just tasted stale. Stale. And he was like, you know, he wasn't going to admit it at all. He wasn't good.

Of course.

How would he know? He's like, you know what? I open a bag of beans, I put the beans in the grinder. That's how I make the coffee. I.

You know, he probably didn't even bother to check the expiration date, you know.

Because why would you? Why would you.

And, yeah, he just trusts that if it's in the cabinet, it's still acceptable.

Yeah. Yeah. And honestly, I think that we bought this coffee because we, you know, have our groceries delivered. I think it was just bought and it was out of date and no shade on the person who, I mean, who thinks to look at that. You know, who. If you're the shopper for us, you know, who thinks to look at that? But, yeah, he looked on the bottom of it and the expiration date was August 2025.

Also two months ago.

Yeah. Which is two months too long, let me tell you.

You were reminded of that the other day, weren't you?

It was bad. And he was go. He was not going to admit it, you know, Michael was not going to admit. Yes. He was just like, you're so picky now. He didn't say, you're so picky. I was just getting the you're so picky vibe. You know, I could just feel it coming off of it.

If you could. If you could see, you would probably notice that.

Yeah.

You'd probably be able to read that on his lips.

Yeah. I could just hear it. We've been married a long time. I could just tell it. And. But then we're like, get to the end and he's like, making the coffee or we're like, you ready for another cup? Yep, another cup of coffee. And I hear him in there, and I hear the bean grinder again, and I'm like. I'm like, you couldn't stand it, could you? He said, nope.

Also, he just got a. He just made a new. A new bag.

Y. Y. We had another bag. And so he checked the date on it and made a new batch. So he wasn't going to admit it, but, yeah, it was horrible. Even he could taste it was horrible.

So, yeah, you. You. You caught him and then he tasted it and he was like, oh, yeah, you're right.

Yeah. I mean, he probably would have been fine if I hadn't said something, but, you know, you draw somebody's attention to it, they're like, yep, that's really bad.

They're going to pay more attention to it.

Yeah, yeah.

You know, words that tend to be buzzwords in our sectors, Kimberly, our identity and disability, and, you know, we tend to hear those a lot in our.

Circles, and you are correct about that. We. Yeah. And people have some feelings. People have thoughts, don't they?

People do have strong feelings. You were asking me a little bit ago if I would prefer, you know, to say that I'm a disabled person or that I'm a person with a disability. And some might beg to differ with me, but I prefer to be known as a person with a disability. I just don't think that sounds as limiting as disabled person, you know, even though it basically means the same thing. You know, you say disabled person, they think, well, he must not be able to do much. But person with a disability, you know, there's all kinds of disabilities out there. So if you just have one that may. And you know that that doesn't affect every part of your body or all of your. Your capabilities. So me personally, I prefer to be known as a. As a person with disabilities. Does the same. Does the same apply to you there, Kimberly?

You know, that's. They refer to that now as person first language. You know, you're.

Oh, yeah, Person first.

You're. You're before your. Person first, before your disability, and that's fine. I don't. I don't think I have strong feelings about it either way. I will tell you that the writer, like the.

The.

The writer in me, the younger Kimberly, who had newspaper editing class at Western Kentucky University.

Oh, yes, yes.

Fringes at person with a disability. Because, you know, when you're doing. Back then, when you're doing newspaper, you always Wanted to, I mean, cut it down as tight and as brief as you could.

Oh, I can see that. Yeah. Because you had, you know, it had to be under X number of words. Right.

Limited space. Right. Limited space on the page.

So, yeah. In that case, you know, whenever you could get by with using disabled person, it was in your best interest, you know, And I don't. I don't hate it. I don't. You know, you say disabled. Sam Moore is a disabled person. I'm not going to scold you or anything. Like, you're not going to.

You're not going to start. Start punching people.

No, no, no. I'm not going to get violent. I just prefer a person with disabilities. But I can sympathize with all you journalism people that have to condense your wording and things like that.

Yeah. But then again, I don't. I mean, I don't really care. Person with a disability or a disabled person doesn't really. I mean, it doesn't. Doesn't bother me. Now, what does make me kind of cringe a little bit is when someone says, the blind or the disabled. Like in talking to the blind, I'm like, okay, blind isn't a noun, it's an adjective. Again, it's. Apparently I have grammar. Grammar issues. Not really. Languages use disability.

I prefer those with visual impairments.

Right. Yeah. Or. Or people who are blind. Not just the blind or the disabled.

You know, like, we're just conversations with the blonde. That's. You know, that normally doesn't sound real good. It normally doesn't fly with me either.

Yeah. Yeah, but. And, you know, these things get talked about a lot about the language and, and words are important. Language has meaning. It. It is important. It. I. I do think that. And I don't want to dismiss that. That. But I also think as people with disabilities or disabled people. See what I did there. As people, I think we have to extend grace to people and just say, okay, they do not know. They cannot know in my head that I find that word distaste.

Yeah.

You know.

Yeah. And if, you know, they probably didn't even consider that as being possible. That we take offense to. To that wording. So, yeah, we do have to. We do have to give those people benefit of a doubt sometimes.

We do. We do. And we. And, you know, when you said take offense, I bet you don't take offense.

I don't know.

Yeah, like us.

Yeah. Like I said, you know, disabled person. I'm not gonna have a cow and be like, oh, I'm never gonna Talk to you again? No, no.

It depends on how much coffee you've had, honestly.

Well, this is true.

I guess. I guess my fists do tend to.

Yep.

You know, they do tend to clutch more quickly if I've had four or five cups, but.

There you go. Yeah. But, yeah, I don't think anybody takes offense at it. And, you know, taking offense is a choice. And I just don't know most of the people with disabilities who I know, they, you know, we got too much other stuff to be offended by without, you know, the language, you know, used and stuff. Now I think there are. I think lines can be drawn. You know, I think I. I think I told you. I don't know if it was on Mike or not that someone told me. Well, I don't believe in that disabled stuff. I prefer to think of people as handicapable.

Handicaping.

And I'm like, lady, did you come up that all on your own? Because that is ridiculous and that's insulting. It's like, no, you don't get to decide what you call someone else. You don't get to decide that and go ask any other person with a disability. I bet you will. They will say, no, I'd prefer you not call me handicapable.

Yeah, that's like, you know, the whole discussion about calling people with disabilities differently abled.

Differently abled.

Yeah, that sounds a little. That sounds a little strange too, at least to me. Just doesn't flow.

No. And I think it comes from a. I think it comes from a good place.

Yeah, yeah. Whoever came up with that and coined that, me, you know, they meant well.

They meant well and. Yeah, exactly. They meant well.

Just doesn't sound quite right.

It doesn't sound quite right. And. But you know, these things change over time too, don't they?

Yeah. I mean, two or three years from now, Kimberly, you and I might be having a discussion about some other terms and phrases that people have coined.

Right. And. And that's okay because people change. Language changes. That's okay. But, you know, people should be kind. And that goes both ways. People should be kind and then people should have grace when someone messes up, because we will mess up. I will. I will mess up. I bet you could go find something. I have written where I have said the blind.

You know, I messed up, Kimberly, one time back in 1994. Yeah. I'm lucky I still remember it.

Yeah, Just. Just the ones, right?

Just the ones. I'm, you know, I'm due for one or two more screw ups, but.

So you learned, you learned your lesson.

I learned my lesson so well that it hadn't happened again since.

Yeah.

It ain't bragging if it's a fact.

Yeah. Yeah. Well, I don't even know. I'm speechless now, Sam, we have that effect on people. You do. We've ended this discussion about, about words and language with me being speechless.

How ironic is that? But I bet, I bet Keith and Carissa won't be speechless.

They are not. They have much to say. We had a great conversation about media repres, representation and identity and we will listen to them now. Next time, I'll drag you onto one of these calls with us.

Yes, I look forward to joining you three. Next time.

Next time. But now here's another CAL Conversation. Welcome to Demand and Disrupt, a disability podcast. I am your host, Kimberly Parsley, and I am here today with our CAL Conversation guest, roving reporter Keith Hosie.

Hello, disruptors.

And of course, Krista. We need a title for you for the podcast.

I was just thinking that Keith gets a title. Why don't I get.

I know. What do you. We're talking to, of course, Carissa Johnson. What do you want your title to be? I'm fine with.

I don't know, I think you should.

Be like, like, I don't know, something glamorous or, or specialist extraordinaire or something you, you know, all the things.

So we'll think about it.

We'll think about that. We're going to come up with you a. You're a chief disruptor. How about that? You could be disruptor in chief.

I like disruptor in chief.

I like that.

That's what you will be. So we, we are going to talk today about, as part of our CAL conversations, we're going to talk about disability identity and representation and sort of what that means to us and banter the topic around a bit. So disability identity. All three of us, of course, have a disability. So the two of you, if you were going to, if you were, when you do have to describe yourself to others, tell me how you do it and what, what that includes.

I never go, I never lead with the disability. If I'm describing myself, I always talk about crafting and motherhood first. But I do put disability advocate in there sometimes or, you know, I work for a disability organization or that kind of thing. But it's never been hype. Hi, everybody. I'm a wheelchair user now.

Right. And that's of course, if you're, I mean, if you, you're coming into a room, it's obvious you don't have to, you know, you would think. Yeah. Keith, what about you?

I generally also do not lead with my disability. I certainly don't not mention it. But unless I'm doing something specifically like on a panel related to disability or something like that, then I may lead with my various disabilities. But, you know, generally it is of course a part of me, a part of my upbringing and my identity. I just don't go out of my way. You know, I don't have like T shirts that say club foot awareness. I do have a couple mental health awareness T shirts. So I guess, you know, that's my invisible disabilities, my anxiety, my depression. So I guess my visible disability, I don't feel like I need to mention maybe unless, you know, kind of describing myself a little more in depth. But I do. And even on like my Facebook page, I think my. About me, I allude to my mental health as melancholy, but making it.

Oh, I like that.

You know, funny enough, Keith, I worked with you for a couple years, I guess for a good six, eight months. I didn't realize you had feet.

Yeah, I, I don't. I mean, I don't have a very apparent disability, you know, unless I'm wearing shorts and you can see my leg brace, you know, or a high paying day and I'm limping a little more than usual. But I do oftentimes. You know, it's funny, I will run into someone at the grocery store that I may know from somewhere else, and I'm dressed casually with shorts on, and they see, they may have known me for two, three years. They see my leg brace and say, oh, did you hurt yourself? What happened? Like, nope, I was born this way, baby.

Do you say that? Is that, Is that what you say?

Different things. I sometimes depends on my, you know, acquaintance with the person. Sometimes I'm a little more dry and clinical. But if it's, if it's someone I know and uncomfortable with. Yes, sometimes that'll be my response.

Mine. Like Carissa, I. I sort of lead with, you know, I'm a mother, because that's really all consuming, you know, all the time. So mother, writer, you know, wife, that kind of thing. But then I usually find myself at the end saying something like, oh, and I'm blind. Because when you are blind, you know, it will come up in the weirdest of places. Like someone will want to send me a picture, you know, like forward me a picture or something. So I have to, I feel like I have to put that in there. I have, I have to add the. I'm blind to the end of it, just to clear up confusion, you know?

Yeah. Yeah. And is that almost more of a function of your access need than.

Yes.

You know, a need to identify?

No, no, it's really more like you said, it's. It's more an access thing. If I'm walking into a room, and I used to. I would have, you know, when I had a guide dog, that was obvious. When I had a cane, that's obvious. But now with my balance issues, I'm almost always going sighted guide with Michael. And so I think, for the most part, if it's someone I don't know, I don't think that they really. I don't think that they really know that I am blind or that I, I. I don't think that they know. They must think I'm just a really clingy wife. I guess.

You just love him that much?

I guess I'm not sure what. What people really think, but, yeah. So, I mean, I. I never hide it. I'm more open about it than I used to be. I'll put that. When I was younger, I was not as open about it. Do you all find that to be true?

Absolutely.

The same.

Absolutely. There. For probably about the first 19 years, I try to do whatever I can to assimilate, including trying to walk, which was stupid. Well, I mean, I'm embarrassed of my younger self, honestly.

Aren't we all, though?

Aren't we.

Yeah, I was gonna say, for one reason or another, whether it was fashion or something else.

Yeah, yeah, exactly. And. And so I wonder if now we say, you know, we don't, that we're more comfortable with it Now. I wonder, is that a function of us getting older or is that a function of the times changing, do you think?

A little of both. I don't care what people think anymore, to an extent. So it's not as necessary for me to try to be typical than it was. You know, I'm gonna really embarrass myself at this point. I was a poster child at the age of four for Easter sales. Yuck. But anyway. And, you know, by the time I got in high school, my big goal was to walk across the stage or walk down the aisle when I got married because I was that ashamed of my disability.

Huh. Huh? And did you do those things?

Yeah, I did them.

Did you?

And I was proud of them at the time. And now it's just, like, I'm comfortable with who I am, and I don't care. And I'm happy that I'm not happy that it took so long to get there, but I'm happy I'm here now.

Yeah, I think for me, it's. It's more of that, you know, not necessarily that society has changed. I think for. It's just. I've accepted my disabilities more as I've gotten older, and I think that's correlated just a little bit with my access needs. I started to care less about what people thought when I needed places to sit down. You know, I'll get on public transit when I'm traveling with my wife and get all of the dirty looks, because when public transit gets full, my wife gets up so I can sit down. At a younger age, I cared about those dirty looks not so much anymore, because I need that access.

Yeah. Yeah. I think. I think with me, it's. You get older and you realize people really aren't looking at you. You know, they're. They're paying attention to their own.

Right.

You know, what's going on in their head, what's going on on their phone. You know, they're looking at younger people. You know, they're just not looking at me anymore, so. Which is kind of a blessing and a curse, I guess, at the same time.

Yeah, you know, it's. It's funny you bring that up, Kimberly, because I remember. Oh, now I'm going to blank on the name of it. When I was young and impressionable, maybe middle school, our school went to see a Tennessee Williams play, something about glass. What is it called?

The Glass Menagerie.

Yeah. Thank you so much. Menagerie. And of course, the. The protagonist in that story is. Is the young gentleman, but his sister has a physical disability. And at one point in the. In the play, she describes walking late into class. There. There was a. The brother brought a gentleman caller over. I don't know if you're familiar with the play, but anyway, she's. She went to school with the. The gentleman, and she was talking about how she felt like every step she took, her leg braces clanked and clanked and clanked and. And he said, you know, in the play, he said, you know, I didn't even ever notice them. And I. And I thought about that a lot over my life of. Of kind of. You know, we blow things ourselves out of proportion so much that it. It may not even. It may be a nonissue for other people.

Yeah, I. I think. I think so. I also. I think the younger generation, like, my kids have friends over, and none of their friends has ever asked me anything about being blind. Never. I mean, when the kids are here. When the house is full of kids and there's no telling what to wear, I will use a cane in the house. I normally don't. They're here. I do. And none of the kids have ever asked me anything about it. But I can be like, if I'm, if I'm doing obvious blind person things out somewhere, like at the grocery store or something, someone will, some stranger will come up and ask me, oh, do you mind if I ask what caused your blindness? And I'm like, I want to get up the courage one these day to say, yeah, I mind actually. And no, it's not really any of your business and I'm busy. But you know, we've talked about how we are kind of the ambassadors, whether we want to be or not. So you feel like you for all the other disabled people. I have to be nice about it.

Right? You're on show 247 or on, on at work. 24 7.

Right.

But I think there's a big difference between that type of question which is so invasive and personal. You know, I think previously, if not on the podcast, in general conversation, we've had conversations about policing bodies that a lot of able bodied people think that, that they're the police of disabled bodies. You know, when I hop out of my car at a parking space, I may not look disabled immediately. And it's not a lot of able bodied people think it's their job to police us, you know, out of the goodness of their hearts. And so I think there's something different between that question, which is super invasive between that and maybe a kid being curious like you had said before, even though your kids friends aren't that curious. I'm always happy, you know, if a kid's looking. And you know, I picked this up from of course, Carly Finlay, the disability activist from Australia. You know, her first book she wrote is called say hello. And the premise is so often non disabled people, when their children look over at us disabled, they say don't stare. And what does that teach? It teaches negative stereotypes. Right. So don't look, don't look at them. They're different. Instead you can say hello. And I don't ever mind a kid asking me about, about my leg brace or anything. Now I might tell them I'm Iron man or something silly like that depending on how old they are. But that's different.

Yeah, kids are, kids are different. But I mean like my, my kids friends are just more like, oh, she's blind. Okay, that's fine. They just, yeah, Maybe I'm just not that interesting.

Do they ask. Do they ask your kids? Like, do their friends. Have you had that conversation? Like, did they. Between each other? Not.

You know, that's interesting because my. My daughter had some friends over this weekend because it was her birthday yesterday, and so friends over this weekend, and one of them, I had never been here before, and I said, did. Did he know I was. I was blind? And she said, yeah, he knew. And I said, oh, did. Did you tell him? No, I don't know. So it's like, so not a big deal to her.

She.

She doesn't even remember how. She doesn't know how he knows. She doesn't. If she told him, it didn't register with her. She doesn't know. I think they. I think as they get older, it just. It's just. They got their own stuff going on, don't they? They.

I think it's just what it is. They're not interested.

They don't. They don't care about us anyway.

No, no, they really don't.

I think, too, to your point earlier, that society's changed a little bit. You know, we're mainstreaming kids in school much more than we were, you know, when I was a kid in school. You know, you're seeing disability representation, you know, whether it's actual disabled actors or not, that's a different story. I know we about that today, but, like, you're seeing at least more representation on TV and movies. So. I do. I do think it's partly kind of the sign of the times.

I think so. You know, and I was just reading. I get a lot of disability news, you know, stuff, and I was just reading that. I believe it's Georgetown University in D.C. just got a disability studies major. And I know. I think out in California, I don't know which one it might have been Berkeley. I know they've had a minor for a while, but. So I wonder if some of these. We're seeing more majors in disability studies. And I wonder what if you all think that will kind of have an effect, because I know when I had a women's studies class or feminist studies, whatever, I don't remember what they called it in college. That was. I mean, that was really kind of foundational to my understanding of society as an adult. So I wonder if you all think that might happen as well.

That would help. I would definitely like to see more of it because when I was in college, you had, like, the black experience. You had human diversity, which we got a chapter, and I was Proud of that chapter you had. Like you said, women's studies and you know, all these things and, but we're a minority, yet we don't have a class. So yeah, I think it would definitely open some eyes for some things.

So Keith, if that, if that was had been an option, would you have taken a course like that or a major even or something?

Yeah, I would have definitely taken a course or two, maybe even thought about minoring in it. I mean, nothing's more useless than a philosophy bachelor's, which is what I have. So I don't think I could have gone downhill on. No, I, I think it's, I think it's good and I love that it's, it's happening in more places because not just for the non disabled population to understand us better, but like you said, Kimberly, when you were in school, you went to a women's studies class and it opened your eyes as a woman. So I'm hoping that it'll do the same for disabled individuals who may, you know, still be trying to understand their disability or their place in the world. And I think like the history and.

All of that is helpful because internalized ableism is a thing.

Absolutely.

And do you all still struggle with that or did you do. I mean, I don't know when I stopped struggling with that. Honestly, I think doing this podcast and having this job at center for Accessible Living is kind of when I stopped having this internalized ableism. But I feel like I even came into this still carrying some of that. What about you guys?

Absolutely. Yeah. I talked earlier about the before and I call it the before and after. I definitely think the job and meeting other people with disabilities really opened my eyes. Part of it was because I was the only representation in my small town for a while, so didn't have anybody else to relate to. And that totally changed when I came to cal.

Yeah, yeah, I, I as well, some. Somewhere along the journey of when I worked at Cal, it really diminished a lot. I, I, Chris, I think just like you, I came in, you know, I started at the center when I was 24, pretty fresh out of college with my super useful philosophy degree. And you know, I, I had that internal stigma and I had that external stigma and it took really, just, just working. You know, the Great thing about Cal is 51% of your co workers are people with disabilities. So you're seeing people with various types of disabilities go through their day in this agency serving other people with disabilities and, and it's hard to hold on to those personal prejudices. And so I think, you know, that helped a lot for me as well.

And I just want to say here, Keith is to our listeners. Keith is the head of the CAL Board. Right. We have a consumer board.

Yeah. So I. Yes, I am currently the chair of the CAL Board, which also requires us to have 51% representation of people with disabilities. So.

Right. And of course, Carissa and I work for cal, which stands for center for Accessible Living. So if you're a listener out there and you have a disability and you're thinking about this whole identity and internalized ableism thing, you know, reach out to. Reach out to cal, you can find it on the Internet. Do a search, find us. And Cole, I mean, one of the things that we do is we do peer support. We talk to people. You know, we. We talk to people about that sort of thing. So we would love to connect and talk about your journey and what you're going through. How can we can help? So that's why we call this CAL Conversations, is so we can talk about what we do and get more people involved. Because no one needs to go. No one needs to go through the disability experience alone. I was like, Carissa, I was. I was the only. I mean, I think there were other blind people or low vision people in my hometown, but they were older people, you know, they were blind or low vision as a product of age, you know, I think. But I remember when I first got my guide dog going, coming home from New York, where I got her, and coming home and going downtown to keep her, you know, walk the streets, crossroads, do things like that to keep her. To keep her sharp. You know, before we went to Western in. In the fall, to college, and literally, people would stop in the road to say, hey, hon, you're doing great. The street's right up ahead. Okay. Be careful, you know, so, yeah, it could be a little lonely and you don't have other people around. So reach out to us and we'll do what we can to help out.

Yeah.

And that leads us into what Keith was talking about, which was. Is disability representation in media and where you see disability and when they get it right and when they get it wrong, and I don't know, you all tell me, but every time I am. What. I honestly don't consume much media except books because of this very reason. It's like if a movie or a TV show has a blind person in it, I feel like. I feel like the odds are good they're gonna get it wrong. What do you all think about that?

Right?

Yeah.

A lot of it is poor, pitiful me. They have to be healed or they want to.

Yes.

For lack of a better word, they don't want to live anymore.

Right. Yes.

It's awful.

It is terrible. You know, it's. It's. I. I read a book recently, and someone said, well, at least I'm whole. You know, they come out of experiences. At least I'm. I'm whole. Which meant, at least I'm not disabled.

Yeah.

And I. I had some expletives to say about that.

Did you say that?

I did. Of course. Yeah, I did. And I would have. If I'd have been reading, if it was print or braille or something like that, I would have thrown it. But I read books, listen to books, audiobooks on my iPhone, so I wasn't going to throw my iPhone, but it was a near thing, let me tell you.

Yeah.

I think, you know, we're so full of. Historically, you know, TV and movies have been so. And even, you know, the news have been so full of these tropes, these disability tropes, and I just. They don't. You're right. They generally don't get it, because I don't think they take the time to get the perspective of an individual with a disability. I mean, not only are they not hiring actors and actresses with disabilities, I guess the gender neutral plural of that is actors, but they're not even getting consultants to tell them, you know, what the right things to do is. So I love when I see things that. That really do it. Right. I'm trying to think of an example coda. You know, obviously that it was heavy with deaf actors and influence, and they did a great job. You know, I. I was thinking about. I don't know if either of you watched that show Glee. It was years ago now, but they had.

I was a total Glee head.

Yeah. So. So they had Artie, the wheelchair user. He was not. He was a. He was a typical abled individual. And there was a little heat over that. But, you know, I. I think still, the vast majority of disability representation is what some people call crip face. Abled individuals playing disabled individuals on. On screen.

Oh, is that what they call it? I've never heard that term before.

Yeah. Crip face.

Is it any other situation? The world would be in an uproar. It.

You know, they would. They would. And so are. Are we uproaring enough about this?

It's going in the right direction. It's still in its infancy, though.

It is. We are starting to. Yeah. And I know Actors will say, well, it's part of the acting experience to be able to play, you know, a disabled character. It challenges me as an actor, whatever. And I love that Crip face. I love that. I'd never heard of that, Keith. But yes, that. That encapsulates my feeling about that. That is. That's. That's not cool. It's just not cool. But yet it's done all the time. And, yeah, we need to be in kind of an uproar. If, if you're going to take the experiences of disabled people and put them out there for entertainment value, because that's what this is. This is for entertainment and commercial value, then you at least need to pay the people whose experiences you are taking. You know, they. Those people need to be paid in. In terms of being the actors who are involved in that.

Yeah, go ahead, Keith.

I'm sorry, I was just gonna say it's. It's different now, too, you know, like, I, I don't think they can get away with saying, well, we can't find an actor with that disability, because there's certainly plenty of people out there with disabilities who are in the acting field. You had. What was that show Micah Fowler was in?

Speechless.

Speechless. They did such a great job in that show because guess what? They had an actual disabled person playing the disabled character and, and were able to get input from him and probably writers, too.

Yeah. I mean, and I know they have consultants. I know that's moving in the right direction, but we have to be able. I mean, I think we as a community have to say, that's not enough. It's not enough to have consultants. Not. It's not enough. And I mean, Keith, you said that they'll say, I can't find an actor. Well, how many times have they just stumbled upon the right actor for a role? I mean, go looking for disabled people.

Yeah.

To play that. Yeah. If you just sit in your office and, and, and wait for a disabled person just to show up there. No, go put in the work. Go do the work like you would for any other actor, any other role. You know, also, I wonder, I would. Do you think that the. They think accommodations would be too expensive?

Wasn't there an uproar about that at one point? Because Ali Stoker needed to get on stage at. What was it, the, the Tony's or something, and to put up a ramp, they. They just basically threw a fit. I can't exactly remember the. What went on. It was a couple years ago, but it was this older building. And to put A ramp on the stage would have been a, you know, really bad idea and blah, blah, blah. It was terrible. So she had to stay on the stage after she accepted her award, like she didn't go off and then she had to perform like 30 minutes later or something like that because once they got her up there, they didn't want her to go back down.

Isn't that just the perfect metaphor for media representation of people with disabilities?

Yeah. And you know, things get accommodated all the time. That is something that pisses me off all the time. I hate the word accommodations because I like, I, I talked about with one of our guests, I, I think it, I think it was, I can't remember who it was now, but I said, don't you, do you hate the phrase reasonable accommodations? And she said she hated the word reasonable. Like who gets to decide, you know, what's reasonable? And I was Dr. Scoresby, deaf professor at UK is who it was Dr. Crystal Scoresby. And so I, I jumped on that and never got around to the, the whole talking about accommodations. And I hate that word because it sounds like it's something they're doing for us. And you know, anytime anyone goes anywhere, accommodations are made. It is called having a society. You know, I mean, we eat around a table with chairs, so restaurants has, have table and chairs because that is how our society consumes food. You know, other countries, it could be different. In Japan, they do it differently. You know, we accommodate lots of different things for lots of different people for lots of different reasons. And saying we can't do this for the, this disabled person, I mean.

Yeah, no, I agree with you, Kimberly. Kimberly, I, you know, it's, it's this idea and, and I, I think, you know, the, the idea behind it was accommodation. In the term that, that you're using is we all need accommodations. It's like when you talk about the phrase that I hate special needs. We all, when you look at, no matter who you look at, we all have our own particular needs. They're not special. They're not not special. You know, it's one of those things. I think the same with accommodations. We all are accommodated differently. Sometimes it's because of a disability, sometimes it's just part of doing business. But, but what, what has happened to that word, I think is it has been co opted to mean, unfortunately by the non disabled community. Co opted to mean special privileges or you know, extra treatment or something. But what it really means is just equal access. I wish we'd have used the word equal access instead of accommodations.

Yes, me too. Just, you know, equal access arrangements or something like that to. Instead of start the trend. Do what?

Let's start the trend.

Let's do it.

Hashtag equal access.

Yeah, we'll. We'll. We'll make it happen right here. Our. Our disruptor in chief, Carissa. You get on that. Okay, so I. But I think that's one reason that is used, that it's going to cost money. Right. Everything is. You know, we live in a capitalist society, so everything's about money. But yet, you know, for the longest time, a lot of things didn't happen on Sundays because that was our society.

Right.

That we didn't. Stores didn't. Certain things were closed on Sunday because of church and religion and culture or whatever. We have holidays that. I mean, there are a lot of things that we do that accommodate. And our American culture. Well, if our. Our American culture needs to do better about equal access for everyone. And I think I'm done. I think I handled it. What do y' all think?

Go, Kimberly. You know, Keith was talking about special needs, and I think I freaked out some parents the other day because I did a disability etiquette training for some theater kids. And I. I use special needs as derogatory. And they all looked at me like I was crazy. Like, what are you saying? Like, everybody has needs, so they're not special. So when he talked about that thing, jogged my memory for that. But the looks I was given for saying special needs wasn't. Wasn't appropriate.

Oh, I can imagine. I wish I was a fly on the wall.

Yeah. Yeah. And that's the hardest thing, though. Having this platform and talking to an audience is one thing, but when you're in a room with people staring back at you, it's hard, isn't it, to stand up for what you're. What you believe, what you're thinking.

It is. Even. Even with people, you know, sometimes, like, you go out and the bathroom's not accessible or something like that. You're sitting at the mill with your friends, like, God, I have to do this again. Let me go give the speech, you know? Yeah.

Yeah.

I just want to do things like everybody else.

Yeah. And not have to think about it, Not. Not have to prepare, not have to do the. The front. The front work of all that. But that is back to our disability identity. Right. I mean, I think to go through the world the way we go through the world. We are educators, whether we want to be or not. Maybe when we introduce ourselves, we should say that I'm an educator.

Of I'm an educator. My mom always said I was a teacher.

Oh, really?

There you go. I don't want to teach anymore.

No, no, I get it. So any last thoughts you all have before we go on disability, identity and representation?

You know, I'll tell one more story that I wanted to get into. My sister in law listened to one of the podcasts a few weeks ago. It was with the rabbi, the female rabbi. I can't remember her name.

Julia Watts Belter.

Huh.

We were sitting there at a family event, and she's like, I want to talk to you about this podcast. And she says, I don't see your disability. That's crazy. When she says, that's part of your identity. No, it's not. And we just sat there and argued for about five minutes because for a while there, society taught, you know, you see the person first. She's a special education teacher, by the way, and the disability shouldn't be a big deal, but yet it is no matter of wishing that it would go away. Makes it go away necessarily. Even if society was perfect, I would still have chronic pain, you know, you would still be blind, you know, and so that is a part of my identity, because if I wasn't disabled, I don't think I would have gone down the path I've gone down. So it is so ingrained, even though it's not the first thing I'm identify with. And I'm finally proud of it. So I just hope whoever's listening gets there too. I'll get off my high horse now.

No, that was, that was. That's perfectly encapsulated because you're right. There used to be a way of talking about disability, which was. We just. It just doesn't exist. You know, it's like. It's like how Stephen Colbert on the Colbert Report used to say, I don't see color, you know, and of course, that was satire. He was. You know, it's like, of course, you know, racism is everywhere and, you know, race and those things. It cannot be. It cannot not. It cannot be something that is ignored. And disability is the same way. So. I'm glad you. You mentioned that, Keith, Go ahead.

Carissa did such a good job. I don't know if I want to follow that.

She does that doesn't. She does.

That's, That's.

That's why she's the chief disruptor in.

Chief disruptor in chief. That's right. Yeah. I think you know, it. Me too. It took me a long journey to get to where I am. Now, where I don't have much internalized stigma, where I do have pride of being within this community of wonderfully talented and diverse individuals who much of the earth passes over. You know, I've talked to friends who are parents that have said, you know, I. My child has never met some of their aunts and uncles because we basically got written off when I had a child with a disability. And my initial response was, how horrible for you all. And then before I could even say that, this one friend who I was talking about not too long ago said, and I feel so horrible for those family members that they don't get to meet the wonderful person that my child has become. And so I think we need to take that kind of focus on that. That's.

And it definitely doesn't mean that disability doesn't suck. I'm not going to say that either. We're not glorifying every little thing. My chronic pain sucks.

Yeah. I mean, I had a migraine yesterday. I had to leave work early and go home and crawl in the bed. You know, that was not ideal, but it's related to my diagnosed anxiety. It does. My chronic pain sucks, too. You know, I think it's a difference between, you know, disability pride doesn't necessarily. And, Kimberly, you had a great conversation about this a couple episodes ago. But, you know, my disability pride doesn't necessarily mean I'm happy with my disabilities, just that I can find beauty and community within that. And I wish we had more representation on TV to bring that back around.

Absolutely. Yeah. Yeah, absolutely. Because what we want to show it to the world is that it doesn't have to be about shame. We can be proud of who we are as disabled people and show that not. Not necessarily, we're only happy if we're cured or healed or whatever. We're happy as we are. We're proud of the people we have become, and we're not ashamed.

That's it right there. That's the sound bite.

Well, thank you, as always, for joining me, Keith Hosey and Carissa Johnson. I. I love these conversations. I learn a lot. I hope our listeners did, too. So thank you all for joining me, and we will do it again.

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 media in the show notes. Please reach out and let's keep the conversation going. Thanks everyone.

There's a difference We've had our curtain calling this time the writing's on the wall this war of words we can't defend Two damaged hearts refuse to mend trash this situation's pointless with each and every day it's not a game we need to play we try to make things better Repair and rearrange things but each and every letter spelled out the for us too oh open up our minds and hearts to change Then what will be will be Disregard for good to set us free Free there's just no way of knowing if love lives any more way Turn out the light and close the door we try to make things better Repair and rearrange things mud each and every letter spelled out the need for us to open up our minds and hearts for change.