Episode 67: CAL Conversation: Spontaneous Gratitude

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 am your host, Kimberly Parsley.

And I'm your co host, Sam Moore. I am tickled pink today, Kimberly, to be involved in my very first Cal conversation.

You are. We are doing things a little bit different. We have our usual suspects, our disruptor in chief, Chris Carissa Johnson.

Hello, everybody.

Howdy. Howdy.

And we have our roving reporter, Keith Hosie with us.

Also, Keith.

Hello. Hello. I am. You can. You can paint me tickled, too, because this is my first podcast with Sam.

It is.

We're making history today, aren't we?

Mine.

Too. Yes.

We have decided just to put everybody in. In the pot and stir it up and see what we come up with. And I'm excited. How about y'? All?

Oh, yes.

Yes. Let's go.

For sure. And speaking of stirring pots, I've got this sort of suspicion that a lot of that will be going on next week because next week is, in fact, Thanksgiving, Kimberly.

It is. It is Thanksgiving. So the big question have to ask, has anybody got their tree up yet?

No.

No.

No.

But it may. No.

Sometimes.

Well, it's not a hard no for my household, but sometimes we do. But this year, we're slow, you know.

And I love Christmas, Kimberly, as you know, but we have to. We have to enjoy Thanksgiving before we partake in Christmas festivities. I mean, I'm already hearing Christmas music from time to time when I go in the department stores and so forth.

Oh, you've heard that since Halloween?

Well, this is true, Carissa.

You sounded. You sounded offended at the very notion of Christmas trees right now.

Okay. We have a holiday before that I love. We'll play Christmas music super long, every minute of it. But no, we need Thanksgiving first.

You know that. That Gregson Wilson song, another country song? Kimberly, Redneck Woman, when she. She mentions in the ch that she keeps her Christmas lights out on her front porch all year long.

I. I guess I am. I'm alone in this. But we don't have our Christmas tree up yet. But it is not for lack of me trying.

You intended to put it up?

Oh, I have been having a fit. I've been playing Christmas music. I've been burning Christmas candles. I've even stocked. I've even stocked the fridge with eggnog.

You know, Kimberly, you're not alone. I'm not as focused on the tree, but I do like clockwork. On November 1st, I turn on the Christmas channels. My. My family Hates it. They complain, they moan, and then they nod their head along. But yeah, I'm. I, I. And I love Thanksgiving. Don't get me wrong. Thanksgiving is probably my favorite holiday as I get older, but there's just no Thanksgiving music except for maybe three songs. So, yeah, I crank up that Christmas music. 11:1.

Yeah. Because Thanksgiving is just the official beginning of Christmas as far as I'm concerned.

You can make a case for that. There's almost more to piggyback off key. There's almost more Halloween music out there than there is Thanksgiving music.

Yeah. Yeah. Outside of, I guess, Arlo Guthrie and a few others.

Yeah.

Oh, come on. Give Adam Sandler his do now.

Adam Sandler.

Yes. Yes, I. I do know that.

True.

That. That's.

Yeah.

And that. That song gets on my last nerve. I tell you what, it really does actually.

My ring toad right now.

Oh, that's.

That is. Now there's a. Who's the. Who's the one who sings the song Stretchy Pants? Have you heard Stretchy Pants?

It sounds familiar, but I couldn't tell you who sings it.

It's a. It's a. It's. It's a woman. I don't.

It's like a. A more recent female pop artist.

It is. And I don't know who it is. If listeners. If y' all know who it is, demandadisrupt Gmail.com, let me know.

Know this.

Oh, you should ask a. Ask the A lady to play a Stretchy Pants for you because it is awesome.

Harry Underwood.

Oh, Harry.

Good job, Keith. Look at him go. He is on the ball. Thank you.

So my fingers did the. The searching.

Oh, you did. You didn't AI this one?

No, I just Dr. Googled it.

A Dr. Google. I refer to chat GPT as chatty G now, so we love it.

Keith is multitasking. Way to go, Keith.

He is. So, Keith, what's your favorite Christmas song?

Oh, that's like. Oh, man, that's tough. Tough, tough, tough. You're gonna. You're gonna have to come back to me. There's too many.

I. I hear you. But, you know, I have found if your family is grumpy the way yours and mine are, I think you have to play Feliz Navidad because.

Yeah, I like that one.

You can't help. They can't help but, like, dance a little to that one.

Absolutely.

Yeah. You gotta smile a little bit at least when you hear police Nolly dot that one.

And the. The. The. The Snoopy. It's called Linus And Lucy, you know that comes on at the beginning of the Snoopy Christmas.

That one.

That one. That one. That's it. Huh?

They also have a Thanksgiving song. And I will tell you what my least favorite Christmas song is. I definitely have that one pegged.

Oh, what's that?

It's the one. Christmas Shoes. It's so sad.

Oh. From new song, I believe is who that is. That is. It's a good message, but yes, it is sad.

The most depressing Christmas song ever.

That's why it's my least favorite.

It'll tear up your heartstrings, that's for sure.

I hate. I hate Sappy Christmas. I do not like Sappy Christmas.

I'll come back to Kimberly. My favorite song. You mentioned peanuts. And I do absolutely love Christmas Bells Are Ringing by the British Royal Guardsmen. And it's. It's about Snoopy flying as the. The Red Baron.

Oh, that is a great one. Yes.

Is that what that's called? I just always call that Snoopy Christmas song. So what's the name of it? Actually.

I think Christmas Bells Are Ringing, I think is what it's called.

I love that.

That's on bells.

I think I've also heard it called Snoopy's Christmas.

Yeah, so it is actually called that also.

Oh, okay.

Snoopy's Christmas by the Royal Guardsman.

You're right. That is a great one. I love that one, too. That's on my.

That's a sleeper.

My. Yeah, it.

It.

You know, it's interesting sometimes some songs come and go, don't they? Like, it'll be popular one year and then not the next.

Yeah, there are some trendy songs.

I said I was gonna have to look that one up too. I've not heard that one.

Ah, yes. I'll have to share my playlist with y'.

All.

That's what I'll do. I think you can make your, like, your playlist public.

You know, we'll have to compare playlist.

We will.

And then when my kids are being real turds about my Christmas music, I play from spongebob squarepants. Don't be a jerk. It's Christmas.

That is popular in my household.

Is it? Yes, it's great. It's a. It's a holy message. It truly is.

I think I've heard that. I probably. I'd probably recognize it if I heard it.

It's awesome.

It's great.

So we are going to talk our. Our topic, believe it or not, is not Christmas, but we are going to talk about spontaneity. Because we had some issues come up that we. We all kind of talked about spontaneity not being a thing for us. And Chris, I even. I sent you an article that someone had written, and I believe your response was, this describes my life. Do you want to talk a little about that? It sure does.

Before we talk about the article, though, believe it or not, I can relate spontaneity to Christmas if you want me to do.

Oh, please do. I love a good segue.

Because we. We all have to find our own ways of dating. We don't. We don't necessarily get up one morning and go on a long trip or whatever. I would love to do that. But my husband this weekend, he said, do you want to go see the Christmas lights at Patty's? Because it's warm and you know, I have pain when it's cold, so. Right. He thought that would be a good trip for me. So we went and we saw the Christmas lights down here at Grand Rivers, there's a restauran called Patties that is very popular and they deck. They deck that place out for Christmas. So we had fun. We visited Santa's workshop and did all the Christmas things before Thanksgiving, believe it or not. So a.

That's awesome. And where did you go? Where was that again?

Patty's 1880 settlement.

I've been there several times. I love it.

I love it, too.

They're famous for their 2 inch pork chop and all their desserts and the.

Bread and strawberry butter. Absolutely.

Oh, wow. So do you have to make reservations for this place?

Because these days you pretty much do.

I certainly. You don't have to, but you might not get it if you.

I see. I think. Okay. I cannot tell you how happy I am that you had a spontaneous experience, Carissa, because those are not always the norm, are they?

No, they're not. But that. That's my whole point about spontaneity. You still have to find it some places. You know, friends of mine know I may or may not be able to get out, but when I can, I do it. And you can have spontaneity in other ways, too. Like, I don't know, my husband surprised me with flowers sometimes. That's spontaneous. We all have spontaneity.

Yeah. Yeah, you're. You're right. That, that, that is true. And I think that. I think disabled people. I don't get a lot of spontaneity in my life, but I am prepared like nobody's business.

I mean.

I mean, you over prepare almost, don't you?

I do. I Do I am what is known as an over preparer. And what about you, Keith? Spontaneity. What, what does that look like for you?

So I think it, it looks different ways. What it doesn't look like for me because of my disabilities is, is last minute planning. So, you know, which is a lot of when someone thinks about being spontaneous, right, they think about taking a trip or going somewhere unexpectedly. Not everyone thinks about like flowers like Carissa said, or, you know, and I'm all about spontaneity and those types of situations. But as far as trips or outings or going somewhere, you know, there's some planning that I like to do. So it's, it's, it's difficult. I like to be spontaneous with advanced notice.

Spontaneous with advance.

Yes, I'm lucky. I like to, I like to plan my spontaneity.

That's right.

Now, Sam, what about you? I know you came down to Bowling Green a couple of weeks ago for the WKU homecoming. So what, what went into making that happen?

I did. It was, it was great. Maybe not. It wasn't one completely spontaneous as my buddy Will and I, we've been, we've been planning it for quite some time. But, but it was fun. You know, I got, I got my Great American Donut Shop donuts. Just had to throw that in there.

Awesome.

Those were great.

Best thing about Bowling Green, it's definitely.

On up there with one of the best things. But you know, I'm the, I like to travel and go places. So, you know, as long as I'm with somebody that's a, a trustworthy sighted God, I can, I can go just about anywhere and, and do anything and, and have a good time. Bowling Green trip was, was fun. Although, you know, sometimes when I go back, it's, it's, it's fun to just sort of try to tell where I am on campus random times. And I have, you know, I wasn't able to quite do that a few weeks ago as much as I thought I would because campus has, has changed so much. And anybody that's ever been on a college campus as a visually impaired student knows that, you know, most college campuses, especially Western, are no stranger to construction.

Right? And, and those are places that do change because their needs change so often. Right?

Their needs change. And so you might have, you know, steps in an area that once was flat as a pancake. You go back in three or four years or, or whatever. You know, things like that do happen. In fact, funny, funny story log though. This was sort of unexpected. Spontaneity But I got. When I was in. When I was in grad school down there at Western, I got. I got tripped up in an area that was under construction. A kind. A kind gentleman stopped to help me. He was actually a fellow student. And we got to talking, and little did I know until, you know, about 30 seconds into our conversation that he was actually the quarterback of the football team at the time.

Oh, really? Huh.

Brandon Doughty was his name. And so we. We struck up a nice conversation. He. He walked with me back to my dorm and. And that was like the first week of classes. Yeah. Second week, there I am sitting in my dorm room, just sort of minding my own business. I get a knock on my door that afternoon. I open it up, and there's Brandon Doughty, quarterback of football team, and. And he hands me a football autographed by the whole entire team.

Oh, that's nice.

Isn't that something? So I made it. You know, it was a pain. It was a pain in the butt that I got tripped up by a construction zone on campus. But I made a connection, and in the end, I got an autograph football out of it. And me being the big sports fan that I am, I was pretty. I was pretty tickled about that. So.

Yeah. So, I mean, I guess that speaks to the idea of we have to allow spontaneity and kind of be. Be able to pivot, right?

Yeah. At least be prepared for it, be.

Able to adapt, huh? Go ahead, Krista.

It would take. You know, I have to bring everything just in case, like the poncho, in case it rains or. Or extra whatever I need. You know, a lot of people are like, why are you packing so much? And it's like, well, the reacher has to come, the lift has to come. The battery pack has to come.

Right.

Has to come with me. So. So.

And I was wondering about this also, Chris, because we can't control the weather. I mean, we can prepare all we want, but we can't control the weather. So how does. How does. How does the weather impact you and sort of your ability to get around and. And do what you want to do?

I don't do well in wet weather because I have to keep certain parts of my chair dry. I basically, we'll just make a run for it. Kind of reminds me of working with Keith back in the day. One of our first outreach trips. There was a downpour. I don't know if Keith remembers, but I had. I had to just make a run for it because I had nothing. And if I Didn't get in the house. I was gonna have a chair messed up. But if it's rainy and cold, I'm down for the count. I'm at home, so I don't go anywhere. That doesn't happen.

Is that a pain issue?

That's a pain issue. Comes from the spasticity. So when it's raining and cold, I kind of seize up, and that's where the pain comes from.

What about you, Keith?

You know, I'm not, you know, I'm not one of those people where, like, the rain's coming in a day and, and my leg hurts more. I know there are people that are like that. I've never been like that. But I will tell you, my, my arch enemy as far as weather goes is the winter weather. So especially, you know, across Kentucky, we don't just get snow, we get ice. We get lots of ice, either under the snow, on top of the snow, all by itself. And, and I already have balance issues, so I, I, I can't even tell you how many times I have slipped in the snow or ice. Two of the three times I lost my wedding ring.

Really?

Oh, no.

Was slipping in the snow. Now all three times, I found it one time. It took till the, the spring, though, to find it in a flower bed.

Oh, wow.

Goodness.

But yeah, so that's, that's really, like when it's icy out, I have to be really careful. If I'm able to choose not to really travel in it, I won't. But you know how that works. Sometimes you got to go to work, you gotta go to the store. You got all those things. So, but yeah, that's, that's really my, my thing with weather is my balance.

It's, it's the same for me. It's the, the, it's not really the blindness. Although, you know, I mean, you could walk into a snowbank and not know it till you're already in it, you know? Right, Right, Sam. That's the thing, right?

And I'm glad, I'm glad you mentioned weather too, because I hadn't really thought about that. But yes, when I was in college, there would be days when, you know, the sidewalks would be a bit snowy or icy. And they didn't always cancel classes down there. They do a little more often now than they used to, but they didn't always just because the sidewalks were a little snowy or icy. So there were times that I had to try to walk to class, and it wasn't always as easy for me to tell where I was as Usual. Because a sidewalk would be snow covered or a bit slippery, which would throw me off course, and I would need to either ask for help or if I could get, you know, get a God going to class.

Yeah. Because if you're using a cane, you know, a white cane, as a blind person traveling, you're sweeping that cane along and you're trying to find the edge of the sidewalk so where the sidewalk and the grass meet.

Shore lining, as they call it.

Shore lining. Yeah. Yeah, exactly. So but if. If it's covered in snow or ice, you're not going to find that.

Yeah, that. That shoreline's going to be hidden.

Yeah, it's hidden. So. And even if you have a dog, I mean, all. All guide dogs are different. Some of them do well in snow and ice. It doesn't bother them at all. It's not supposed to bother them, but, you know, anyone who's ever had a. Had a dog or two dogs knows they're different. Some dogs just. They're not going to perform as well because they're uncomfortable, because they don't like it, they're not used to it, whatever. So if they're from Florida, if the.

Dogs are from Florida originally, they're probably going to have a harder time adjusting.

Maybe. Maybe it's just, you know, my. My. The guide dog that I had, Garnet, she was just prissy. I mean, she just didn't want to get her little feet wet and, you know, she just kind of was prissy about that, so. And, you know, I don't. I don't need to fall. My skull has been through enough. So having my feet slipped right out from under me and banging the back of my head would not be a positive thing for me, so. Or anybody, but in particular. So, yeah, I'm like Carissa. I think sometimes if the weather says no, you just gotta say, okay, I. Some. There's a time to push, but there's a time to. To stay. Right?

Yeah. Just say, y' all have fun without me. I'll catch you next time.

Yeah. Do you all feel guilt when you have to do that?

I did more so when I was younger, but now kind of surrounded with my people that know my deal. So they may not see me for a few months. Who knows? Depending on when we together, when they're doing stuff. When I was younger, yeah, I felt really guilty about that stuff because I wanted to do everything everybody was doing. And I wasn't disclosing either at that point, you know, everything that was happening to me. I'm A little bit more open now. So the guilt. The guilt is there still a little bit, though, Especially when it's something for my kid.

Yeah. Yeah. I think you've talked about that also in the past, right, Keith?

Yeah, I think at my age now, I'm starting to get where I don't care what people think. So I'm not. Yeah. When I was younger, there was. There was guilt around, not expect. And again, like Carissa said, especially when it's showing up for my daughter, you know, But I. It's not often weather completely stops me from going to what I need to. It's more often that I let the weather be an excuse because I can. I can go out and I might slip and fall on my butt and. Oh, my. This last spring, I. I slipped in my yard. I was bringing groceries in and. And it was lightly snowing, and so the. I have a. Just a tiny hill and I fell and my ribs hurt for. For three weeks. So I'm still in the dumb stage where I go out and try and do it during that stuff and sometimes pay for it, but more often than not, if I'm. If I'm using the weather, it's more because I don't like the cold.

Ah, yeah, yeah, understood. You know, when we were talking about spontaneity, one of the things that I. That was in the article I sent you, Carissa, was about going to people's houses.

Oh, yeah. That doesn't happen.

You know what it made me realize? My house is not accessible for you.

Well, you are in the 99.9% of the rest of the population, Kimberly.

Well, I mean, I apologize because I feel like a jerk, but it, you know, when it's not your access needs, you don't think about it.

So more on the spectrum of I don't care if it's not accessible for me, I just won't show up. But I'm. I'm a little concerned for you because you may need it one day.

That is 100 true, isn't it? 100 true that that needs to be something everyone thinks about. I. I mean, I. I assume you didn't get to spontaneously just go look at a bunch of houses when you were looking to buy a house or something, right?

Oh, no, there was a lot of. My husband would go in and video or if we could take a portable ramp. And the portable ramp worked. We did that. I know when we come down to like two that we wanted, we. We took a portable ramp and so I could get in and. And actually see It. Because I wasn't going to purchase a house off of video, but, you know, no, I couldn't get into probably about 90% of the houses we looked at. And it wasn't moving the next day when we closed either. It was, okay, let's start making it where I can live here, right?

Oh, I didn't even think about that.

Yeah, that had to go into the budget and everything, so. But yeah, my. Even my own family, a lot of their houses aren't accessible. And you know what? They sometimes get angry with me that I don't show up for things, but.

Well, you can't get in the door.

Well, it's not just that, like, my grandmother or not my grandmother, my mother had a messed up driveway. So they're like, go over to the neighbors and then you can roll over. Well, I'm sorry, that's a bunch of woods. And if I sit there and roll, I'm gonna hit every bump known to man. And then I'm gonna be in a really bad mood because I hurt by the time I get there. And they're like, why aren't you coming? Everybody's gonna be here, like, because I don't want to hurt. It finally got to the point where I couldn't get in my brother's door that we now have holidays in his shop building. And he actually put a bathroom in that I could use for that reason. So we don't go in the house, but we're in his shop every year.

Huh. Well, and I mean, that's great that he did that. I. I don't know. Like I said, I feel. I feel bad that it was just until I read that article, I was like, chris, I can't get in my house. And what is involved in, like, making. I mean, it's more than just putting up a ramp, right? Isn't it?

It's more than just putting up a ramp. I have to take into consideration. Can I get in your bathroom? Am I gonna nick up your walls or your, you know, floor? I don't want to tear up your carpet. I don't want to make anything muddy. So there's a lot that goes into it. So basically, I just don't go to people's houses. I'm a hermit anyway, so. But we always plan to go out somewhere. Coffee shop sucks. When my son has birthday parties at friends houses and I can't go.

Oh, yeah, yeah, yeah. We've had. So I've had, with the help of a center for accessible living, portable ramp. I have had two friends who Use wheelchairs in my house. It's. Now, my house is not very accessible even once you get in it. It was built in 1940. You know, I. I'm pretty sure the doors are 30, 32 inches. They're certainly not bigger than 36, but. But into the. At least into the building. But, yeah, that's. I mean, that's something I think about when we bought the house, gosh, 15 years ago now, some of the things I. We were living on the second floor of a duplex. And I like the fact that this house didn't have too many steps in the front, just had one kind of step in the back. Bedrooms and a full bath on the main floor. I don't need that right now, but I know that my disability is degenerative. My. My foot is going to get worse, and I may at some point need a wheelchair for mobility use. And so, you know, that. That kind of future planning. Not many people do that when they buy a house. Of course. I worked at the center for 15 years. I'm knowledgeable about, and I have, you know, I. My circle. My. My friend circle has number of people who use wheelchairs. So something I've thought about. But yeah, on. On any given day, if. If a friend drops by who needs that physical access, I don't have it. I don't have a ramp in the garage.

Yeah.

Affordable ramps. For that reason, we just ended up buying a set, and we're done with it. Because there are occasions where I do have to go places, and it's like, let's get the plywood board up and, you know, we'll lift you in. No.

Oh, what a pain.

No, please don't.

Right, right.

Portable ramps that I feel safe with. Thank you.

Yeah. I'm glad you mentioned that ramp program, Keith. Those ramps are constantly in use, so there's no guarantee that someone could get one because it's a very popular program. I hope we can increase that. But, yeah, reach out to the center for accessible living if you're in need of a ramp, and you could probably get on a waiting list for that. Also. Carissa, did you buy some portable ramps?

Yes, I did.

Like, from, like, a builder or from Amazon or. How does one do that?

Well, they're all over. They're all over the Internet now. You can buy them at Lowe's online or whatever and have them shipped to you. But I did a durable medical company, so.

Oh, okay. Okay. Wow. See, there you go. There you go.

One of those things that I just decided to plan for because I got Tired of being packed places or.

I think that would be awful.

Shift ramp that I was afraid that it was going to fall in on me.

You being packed is like. Is like for me and Sam, when people, like, grab hold of us and push us around to tell us where to go.

Yeah. Without us giving them any kind of.

Any kind of consent education as far.

As sight of God or what that is. Right.

So I am both annoyed and unsafe at the time, so.

Wow, that's awful.

Yeah. Happens all the time, doesn't it, Sam? All the time.

It can't. Especially when you're about to walk into a danger zone. If, you know, if they don't know any better, if they're just trying to protect you, they'll. They just grab you by the shoulder, go, wait, wait, stop.

Yeah. Yeah. And. And when what you're doing is actually trying to run into the thing slowly so you know where it is.

Yeah, it's.

It's like I had this until you moved me to where. I don't know where I am now.

It's like I was taking it slow so I could stop myself, you know, before I got there.

Yep.

So, yeah, people. People mean well always, but, yeah, sometimes they're. Sometimes they're more. They do more harm than good. Let's. Let's just say that.

Yes. Yes. And I think it takes it. That kind of thing takes grace both ways, like we've talked about before. It's like, you know, you have to not be annoyed, which is hard, that they just grabbed you and physically moved you, but then they have to not be annoyed when you say, hey, could you not grab me and physically move me? You know?

Yeah. On the one hand, you've got to be understanding of the fact that maybe they. They want to help you and don't know quite how, but.

Yeah.

But, yeah, you know, when I. When I do trainings and I talk about asking before you assist someone, you know, I. I always bring up, okay, we live in the South. Everyone is polite. We want to get doors for people we want to help. You know, but if you grab the door that someone's using to hold up themselves while they walk through it, you know, I always. It always stuck with me. We. I had a coworker when I worked at California. Her name is Annie King. She's retired. She's a retired social worker. And she. She told the story once she, you know, she contracted polio as a child, and she walked with a cane and a limp the rest of her life. And she said it. It wouldn't Fail at least twice a year. You know, when she opens a door, she uses it to stabilize herself along with her cane. Once or twice a year, it wouldn't fail. Some. Some nice Southerner would come and just grab that door for her, and what. What would happen is she'd fall flat on her face because she was using the door as a support. So, yeah, we got. We got a lot of Southern hospitality maybe going against us sometimes.

It.

It's. It's so kind. And I know that people mean well, but, yes, I have had the same thing happen to me, and I also kind of use it for support. So. Yeah, and this article that. That I sent Carissa, if it's still up, I'll link to it. But it's been. Been a while back. It's says when it comes to even the most routine of tasks, people with disabilities use much more energy. And sure, it says, according to the American Academy for Cerebral Palsy and Developmental Medicine, in particular with cerebral palsy affects the way people move, people with CP may have to use three to five times more energy to do the same amount of work. Carissa, do you feel that?

That's very true. Your muscles are so tight. So to get it to do anything, it's like I've got weights on or something. That's how I describe it to people.

Yeah, Yeah, I know. For me, because of my balance problems, I am always. Even just walking around at home, I'm always tense, you know, because I have to hold myself tense to it in order to have the balance, you know, and if I'm up doing a lot, moving around to do a lot of things that day, I feel it in every muscle, everything. And then the next day, there is no spontaneity. There is nothing happening because I. It's like a crash day, you know, no spoons left. No spoons, exactly.

I have to have at least one day a week where I'm a bit. I'm a vegetable, so.

Really? Yeah, Yeah. I have a friend, she said we're gonna get tattoos of, like, forks. Like, I got no spoons, but I got a fork, and I'm feeling stabby, so.

A fork and I'm feeling stabby.

So what else do we want to talk about here, guys, before we go? This has always been a wonderful conversation. I love these. What else about spontaneity? Do the folks maybe who are at home and feeling like they need more of it, they. What do we got Anything else?

Well, something else to keep in mind. I tease this for you 3. Before we actually went on the air here. But, you know, public restrooms and spontaneity, I feel like those go hand in hand because a lot of times when I try to navigate a men's restroom in public, I'll have whoever I'm with just drop me off at the door and I'll tell them, just wait and I'll catch you back outside here and I'll try to figure it out from the door. As far as where things are like the, you know, the facilities, the, the, the sink and the paper towels are dry or what have you. And those, the layouts of your, your typical public restroom is, is, is doable, very doable. But, you know, you don't always have your typical layout back. A lot of times you don't, like, the paper towels might not necessarily be right to the left of the sink, or, you know, the trash can may not be directly below the paper towel rack like you'd expect it to be. And so things like that, you know, when you're out and about, you're using a restroom that's unfamiliar to you. You know, a lot of public restrooms aren't necessarily designed with, with blind or visually impaired people in mind. So, you know, all you, all you feature future construction workers out there that, you know, design public restrooms and future, future venues. Maybe a little something to keep in mind.

Well, even accessible restrooms like the stalls, there's different designs for those. So I have in mind always, you know, places we go where I can use the restroom and where it's not a great idea. So that goes into the planning.

That's another thing that, that's another important.

Consideration for sure, because you, you restrict, don't you, Karissa? You don't eat, you don't drink.

I, I. And whenever we're going on a trip, I hate stopping because I never know what, what the bathroom's gonna look like. So I definitely restrict my liquid intake.

Yeah. Yep. Oh, speaking of, you know, with food. Okay, y', all, that what goes into feeding me, okay. Like, I don't even snack in a spontaneous way. Like, I have, these are my, these are mommy snacks. You don't touch them. They're in this spot. And if I'm hungry, like, just getting food, it's like, okay, I have to know what I have bought. I have to have labeled what I've bought. I have had to labeled whatever I'm going to cook the thing in. So this is why I eat primarily cheese and crackers, honest to God.

Wow. Well, you know, it is important to know where things Are so I can sort of understand why, why those snacks are restricted because somebody gets into him. You know, if they don't finish it, they may not put it back in the, in the same spot you had like the box of cheese crackers. You know, when they're finished, they may not put it back in the, in the same spots you had it. And you know, we always, we always have to be more organized as blind and visually impaired people actually not do, Kimberly, than, than your average bear. We have to, you know, we have to be at least a little bit more organized and keep track of where things are.

Yeah. Look, there's a downside to living with sighted people. That's all I'm saying. That's all I'm saying.

True. Between my two boys, I could never find anything.

Keith, are you feeling, are you feeling put upon here?

No, because I have a 12 year old child who eats me out of home and, and, and, and bonus children all the time over here. So I, I'm, I probably need to hide my snacks that I like just to keep it out of the hands of 12 and 13 year old wildebeests.

Well, it's, it's a good idea. It is.

I have a certain place where I, I told you I had to veg, you know, one day a week. So I'm hoarding, you know, and hiding snacks in that certain spot so I don't have to get up. So yeah, I feel you there a little bit.

Yep.

Works.

Yep, exactly. So yeah, I can't even feed myself in a spontaneous manner unless it's like door dash.

Right.

So any last thoughts before we go, guys?

This has definitely been an intriguing and thought provoking conversation. I'm sure. You know, the longer we talk, the more we could all keep coming up with stuff, but.

Oh yeah, this could be three episodes.

It really could.

I love, I love talking with you guys. I really do. Couple things before we go. I want to tell our listeners. Our disability community is mourning the loss of disability activist Alice Wong. She is known most for her writing, in particular the disability visibility project that she did for the New York Times. Closer to home and more personally, our community is mourning the loss of Jason Jones. Jason was a fierce advocate in our community in Kentucky. He worked for Human Development Institute, did a lot of things. Kentucky Congress on Spinal Cord Injury.

Yeah, I believe, I believe he was involved in starting the Kentucky Spinal Cord Injury Congress.

He was. We're going to be talking about, about that. I've got an interview coming up about that. Our heart goes out to Jason's wife and children. Definitely he is, he will be missed both personally and just the work that he did. Any, any of you guys know Jason want to say anything?

I never met the man, but I can already tell that, that he had a profound impact on, on a lot of people. So rest in peace, Jason. And yes, thoughts and prayers go out to, to his family and friends for sure.

I got to know Jason through the parenting book that the Avocado Press did and some of the speeches that we did after that. He loved his family. He loved them more than anything. So he was a great guy. I, I will miss him, definitely.

Yeah. I think, you know, the greater disability community will remember him as, as the, the great advocate he was. But yeah, he, I mean, he was also just a stand up guy. Pun intended maybe. I don't know.

He would love that pun. Would love that pun.

But yeah, I mean he, you know, he was just, just a friendly person, easy to get along with, easy to talk to, you know, always smiles, always had a kind of a smart quip. And you know, of course, most importantly, he was also a Steelers fan, so.

Well, I've got. There's worse teams than the Steelers.

You know, my, the person who I call my blindness mentor, Jerry Wheatley. Shout out, Jerry. Hey, Jerry. Jerry said, you know, there's not a lot of people who he would call real inspiring, you know, but Jason was one of those who, you know, we hate to use that term in, in our community, but Jason was inspiring to us.

You know what? He was inspiring for the right reasons though.

Absolutely.

Not the token inspiring because you have a disability in general, but just what.

Because he was funny.

Work and his life and you're right, he did, he loved those kids. You know, I know one of the things he really wanted to do when they were still kids and they're in there in high school now, I believe was to take them to a Steelers game and a couple years ago, either last year or the year before, they went up to Cincinnati and cheered the Steelers on. So not, not to bring it back to football.

But that's, that's great though. That's great. And I hear he, he was, he was funny. If anyone wants to hear. Jason was our very first interview on demand and disrupt. He, along with Dave Mathis was the first interviewees.

And I'll have to go back and check that out because that, that was quite a ways before I became your, your co host.

It was, I was doing this solo. I promise I've gotten better since then. But Jason was patient and helped me through. He actually wrote the introduction to the book, A Celebration of family Stories of Parents with disabilities. So you all should also check that out. So we mourn, but we remember and we don't forget, right?

Absolutely. Yeah, we can. We can celebrate with memories, for sure.

There you go. All right, gang, as always, these are some great conversations. I get feedback. People love, love our conversations where we just talk about the issues. You know, people learn a lot. Thank you, gang, for joining me.

Always a pleasure. Even though it's my first time to actually do this, but it's always a pleasure.

Thanks for joining us, Sam, on this one.

Good thing, everybody, by the way.

Yeah.

Happy Thanksgiving.

Happy Thanksgiving, y'.

All.

Bye.

Bye.

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.

You say you've seen a change in.

Me.

Just for once I think I would agree. We both know there's a difference We've had our curtain calling this time we're right. This wall of words we can't defend. Two damaged hearts refuse to mend.

Church.

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 to open up our minds and hearts to change. Roll the dice then what will be will be District God for good to set us free. There's just no way of knowing if love lives any more Turn out the light and close the door. We try to make things better Rimp there and rearrange things mu each and every letter spelled out with me for us to open up our minds and change.