Episode 58: CAL Conversation: Navigating Healthcare as a Person with a Disability
Kimberly talks with Carissa and Keith about dealing with doctors, medical equipment, and the healthcare establishment as people with disabilities. They discuss a recent study that shows disabled people are discovering cancers at later stages because of the inaccessibility or difficulty of early cancer screening procedures for people with disabilities. Plus, Sam and Kimberly talk about disability pride month. Below is an article that talks about the reason for celebrating disability pride.
thearc.org/blog/why-and-how-to-celebrate-disability-pride-month/
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
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You can find the transcript in the show notes below when they become available.
Transcript:
You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.
Kimberly: Welcome to Demand and Disrupt, a disability podcast.
I am your host, Kimberly Parsley.
Sam: And I'm your co-host, Sam Moore.
Kimberly, we are officially in the dog days of summer.
Kimberly: It is so hot here, isn't it?
Sam: It's so hot in Kentucky, anywhere around Kentucky.
Doesn't really matter where you are.
There's no relief at this point.
Kimberly: None at all except air conditioning.
Sam: Yeah, exactly.
Which luckily you and I are in some knock on wood there.
Kimberly: I tell you, I tell you, we've been without air conditioning a couple of times, and it is miserable.
You and I were talking people in Kentucky.
We live here for the spring and the fall, right?
Because it is just beautiful in spring and fall.
Sam: No better place to be those two seasons.
Kimberly: Nowhere.
I mean, it is absolutely gorgeous.
But, man, it is hot in the summer and it's summers are so long.
And then lately, the winters have been cold and either.
Sam: Yeah, you definitely get both extremes here.
Kimberly: You really do anymore.
I mean, even even in the winter, it's even if it's warm, it's rainy, you know.
Sam: And so you kind of got to take the good with the bad.
But we definitely get four seasons, unlike Florida, where I think they get like two.
Kimberly: They get like I think they get like one and then a week or something else.
Sam: Yeah, a week or something else.
That's probably about right.
Anybody from Florida, if you're listening, correct us if we're wrong.
Kimberly: Do tell us if we're wrong.
Sam: Email [email protected]
You know, we've been we've done the vacation thing there.
Kimberly and I both have, but just not spent long durations of time there.
Kimberly: No, only been there during tourist season.
And, you know.
Sam: Yeah, well, we started going on fall break before fall break.
You know, really caught on.
And now everybody goes on fall break.
If you have kids, you know.
Kimberly: Yeah, you go on fall break.
But now you get hurricanes during fall break.
Sam: Well, this is true.
Yeah.
And we used to go to get away from people from Henderson.
But now, you know, 70 percent of Henderson go south.
Kimberly: Yeah, exactly.
Sam: We we we'd we'd be diving right into most of them if we went down to the coast.
Kimberly: Exactly.
Exactly.
But we are in July and it is miserable here.
But it is Disability Pride Month.
Sam: That it is.
Yes, indeed.
Kimberly: So I thought, well, today, my guest is for the interview segment is Carissa Johnson and Keith Hosey.
And we are going to talk about navigating the health care system as a person with a disability.
So real, real fun stuff there coming.
Sam: You know, really informative.
It's it's, you know, a useful topic.
Kimberly: Oh, it's a great conversation.
I mean, we had a great conversation.
But yeah, but before that, I thought that you and I might just dive into the controversial topic.
Sam: I think you'll say dive into the pool.
Kimberly: No.
Well, that would be better.
But that'd be great.
The controversial topic of Disability Pride Month and how it's celebrated.
Now, Disability Pride Month is celebrated in July because in July, I believe, July 26th of 1990 is when the Americans with Disabilities Act was signed into law.
And that really changed the landscape of disability.
And sort of since then, people have kind of made disability pride.
We celebrate disability pride the whole month.
Sam: But hard to believe that was 35 years ago.
It's almost to the day.
Kimberly: Yeah, it does.
But, you know, people have their their feelings about disability pride.
So, Sam, what I mean, my feelings are well known on this topic.
What and on most topics, to be fair.
But so where do you where do you stand on the whole is disability?
You should be something you should be proud of sort of.
Sam: OK, I have definitely accepted my disability at this point.
And I'm not trying to to hide it from anybody.
And I really can't, because, you know, you go around with a cane.
It's pretty obvious that you have a disability or that I do.
Yeah, it tends to be obvious that I've got a vision loss of some sort.
In my case, I'm totally blind.
But, you know, I'm not one to to go around touting it, per se, as far as those being quote unquote proud, like, you know, waving their banner, as you put it, before we went on the air here and like, hey, I have a disability or hey, I'm totally blind or or, you know, I'm in a wheelchair, whatever the case may be.
You know, there's nothing wrong with any of those being totally blind or being in a wheelchair, what have you, nothing wrong with those at all.
But it's not something, at least me personally, that I'm going to go around going out of my way to talk about.
If you know what I mean, you know, I've accepted it.
And I'm cool with living with it.
I've definitely had plenty of practice living with it at this point because I've been blind since I was since I was a baby.
But, you know, it's just not something I'm going to venture too far out of my way to talk about, you know, I'm not going to bring it to other people's attention unless it flows and natural conversation or what have you.
So I'm not ashamed of it, but I'm not going to go out of my way to like brag on having a disability or anything like that.
Kimberly: I do.
I do get what you're saying.
And I think the reason I get it is because I I mean, I was sort of there, too, for a long time, because the idea of being proud of a disability is it just seems so weird to me because I was like, it always seemed like, OK, if you could choose not to be blind, would you?
And, you know, most people who have a disability, if you ask them, if you could choose to be not disabled, would you?
Most people would be like, yeah, yeah, I would choose not to be, you know.
Sam: Yeah, because like nobody asks to be in the predicament there and with a disability, you know.
Kimberly: Right.
No one volunteered for them.
Right.
Yes, exactly.
Sam: Well put.
Kimberly: And that is true.
And yet, I guess what I think about it is we have taken we've taken this thing that none of us volunteered for, because basically, if you look at all the minority groups, no one really volunteered to be in any part of those.
And I I sort of think if you take any any of those minority groups, and you're you're proud of what you have of the community, basically, that's to me, that's when I say disability pride, that's what I'm talking about.
I'm talking about the community, not not my particular disability, my particular way of walking with a cane, you know, anything like that.
Sam: The community as a whole.
Kimberly: It is it is the community as a whole.
Sam: It is the people who, you know, the bond.
Bond together, you know, they have.
Kimberly: Yeah, yeah.
The commonalities.
Sam: They sort of help each other through and maybe.
Advocate together in times of need.
Right.
Kimberly: The people who crawl up the capital steps.
Sam: Right.
Kimberly: Yeah, the people who fight for each other and fight for themselves and make change, even though, you know, so many times just getting through the day is hard.
But they're advocates and they're doing that.
And I'm really proud to be part of that community.
As much as I'm a proud to be a part of, you know, my family or Kentucky, whatever any of those things.
That does make me proud.
So in that light, yes, I do have a great deal of disability pride.
Sam: Well, that makes sense.
You know, you're proud to be a part of a group, especially those that those around you that supports you, maybe provides you with advice and assistance in times of need.
Like like you said, you know, advocate with you whenever that's necessary.
So there is a there is a sense of belonging there.
And so, you know, that definitely is understandable.
Kimberly: It is true.
But I don't think it has to be an either or do you?
I think so many times we look at things that are controversial and say, you must pick one side, and I don't really think it's like that.
I think.
Well, today I'm talking with you.
We're talking about disability stuff.
You're also disabled.
I'm proud to be disabled today.
But tomorrow, when I trip over the dog and, you know, wipe out on the floor and fall on, you know, something that makes sure you flex me and fill me in on all these shenanigans.
Sam: Yeah, I mean, you know, make sure you text and send me in the correct order, too.
Kimberly: Yes.
With expletives, you know, deleted, because there will be lots of those when some days disability just plain sucks.
It just does.
Sam: It has its days.
Kimberly: It does.
And I think I think that's OK. And it's not a you must choose a camp and stay in that camp.
I think it's it's OK to say that that, you know, you see how both things can be true at the same time.
Sam: You can have pride in one sense.
And, you know, the sort of happy medium like me in another sense.
You know, I think we we all kind of got that right.
Kimberly: I think so.
I do.
I'm going to link in the show notes to an article by that was posted on the website of the Ark of the United States.
And it talks about disability pride and how how what we're really doing with disability pride is pushing back on the shame and the stigma that disabled people need to conform, that we need to conform in order to be considered full participants in society.
Sam: So if you're not sure where you stand on the whole disability pride thing, maybe after reading this article, it'll it'll help you to sort of establish a stance.
Kimberly: Maybe.
Sure.
Give it give it a read and then let us know what you think, because wouldn't that be fun if people even differing comments, all kinds of things.
Let us know what you think.
[email protected] and or follow that link on the face on the in the show notes that links to our Facebook page.
And we'll have a conversation about Sam: We'll give you a shout out and maybe even read what you have to say right here on the air.
Kimberly: Absolutely.
We would love to do that.
We would love it.
So, Sam, anything else fun and interesting happening for you in the month of July?
Sam: Well, you know, one way I'm beating the heat.
Luckily, these are inside.
We just started rehearsals for a play that I'm in.
Kimberly: You're in a play.
I didn't know.
Tell me about this.
Sam: Believe this.
They're actually well, I'm I'm lucky that I know the playwright quite well.
And I've known him for a lot of years.
His name is Bob Park and anybody that lives in the Henderson area knows this man.
He used to work.
He used to be a dean out of the community college.
And so he used to have a radio show called On the Front Porch, where he would, you know, tell tales about folks from back home, which was Taffy, Kentucky.
He's from Taffy, Kentucky.
So, you know, he told stories and he later sort of transformed these stories into plays.
And so he's written these plays for quite a few years now.
And when he first started doing them, I was so young.
I wasn't in his first few plays.
But but I've been in about the last three or four.
Like I said, I know him quite well because he goes to my church.
And so this, he says, is going to be the last one he writes.
But he said that before.
So we'll see if that's actually true.
But I actually didn't have since I know the playwright and that helps.
I actually didn't have to audition, which really made life a lot easier for me.
Kimberly: So is this like local theater?
Sam: It is.
Yeah, these are, yeah.
These are all local people that that are in the play, which which does really make it unique.
We're not we're not quote unquote professionals.
But I've had a lot of people say that for, you know, a place like Henderson, it's it's pretty darn good.
So we're glad to get their approval and and we just we'll be expecting their butts in seats come next.
Kimberly: You know, what's the name of the play?
Sam: It's called Taffy Shenanigans on the air.
And so what?
So me, I'm actually they're starting a new radio station in the sleepy little town of of Taffy, Kentucky, and I am running it.
Kimberly: You're running it, huh?
Sam: Well, that's my that that's my particular role.
And we'll you know, we'll talk more about this for those of you that, you know, want to come up here and join us for it, be our guest.
But we'll we've got plenty more time to talk about it, because August 23rd and 24th are the are the big dates.
And so, you know, we'll be rehearsing between now and then and and fine tuning everything.
But it's a it's a good group.
We have a whole lot of fun together off stage, almost more than we do on stage.
Kimberly: Did you ever have aspirations to be in theater in any way?
I know you also do some some vocals, some singing.
And then you say you played piano.
So you sound kind of artsy, Sam.
Sam: Yeah, I used to play piano back in the day.
I still do sing some.
But, you know, as far as going into theater, I don't know that I took some theater classes back in high school and enjoyed them.
But I never had strong desires to pursue it for a career, I don't guess.
My aspirations were always along the lines of radio and broadcasting.
I always knew I wanted to run my mouth, which is, you know, one of the reasons I host Blavin in the Bluegrass and the Man in Disrupt along with you.
But but no, I guess I guess the thought of pursuing theater for a career, I guess, was just never real, real high on my priority list.
Kimberly: Well, I have a technical question, and that is, how do you how do you learn your lines?
What do you do during rehearsal?
Do you use Braille?
Do you memorize?
What do you do?
Sam: Well, I'm glad you asked.
Actually, I do use Braille in the early going like right now when they're still reading from script.
And so I, you know, they send they send us all the script.
And I actually I'm not high tech enough at this point to have a Braille printer.
I should probably invest in one.
But right now I have the old fashioned Perkins Braille writer, Kimberly.
Kimberly: Oh, wow.
That thing is a workhorse, though.
I mean, you can't tear those things up.
Sam: You can't.
They are tough and durable.
And I do like that about them.
So I Braille out my lines.
And usually, you know, I'll Braille out the whole script, but I might Braille out maybe the last one or two words that somebody else is saying before I go, before I start talking to sort of clue me in on when to go.
And then I'll Braille out my lines.
And then, you know, as we go along in the play, they encourage us all to try to memorize our lines.
And so I'm going to separate myself from the script slowly, but surely here.
But for right now, I'm still using it.
Kimberly: Well, there you go.
Yeah.
Well, I wonder Braille.
There's just nothing else like Braille for doing that kind of thing, is there?
Sam: No, no, there's not.
And, you know, teach my Braille skills for it.
Although I basically, you know, I'll admit I still use mainly the Braille system that I learned in school.
You know, the new code is slightly different.
Not a complete, not a complete overhaul, but there are differences that I would need to learn if I were to, you know, want to.
Kimberly: No, I'm like you.
We use what's called a grade two or American Braille.
I don't know.
English, I don't know what it stands for, but now they use UEB or English, Unified English Braille.
And you're right.
It is a little different and it does take some, what in the world?
You know, when I'm reading them.
Sam: Yeah, if you're reading UEB, you'll come across, I'm sure, some contractions and things that you're not familiar with.
Kimberly: Right.
But and scary, scary thing is, Kimberly, 10, 20 years from now, they may come out with another system.
Kimberly: They may.
And then I'm just throwing in the towel at that point.
And you know what?
I switched to UEB, but that's all I'm doing.
No more.
Sam: You're like uncle.
I give up.
Exactly.
Kimberly: Exactly.
But I think a lot of people go back to, you know, what they, what they learn because so many of us like you, we Braille our own stuff.
Sam: So if nobody else is using it, then, you know, you don't worry about it.
Yeah.
Kimberly: You don't, you don't so much worry about it.
Sam: Sure.
So, yeah.
Kimberly: Well, fascinating.
So, so Sam will be performing in Taffy Shenanigans.
Sam: I'm glad you remember.
Look at it.
Kimberly: Oh, it's, it's memorable.
My goodness.
What a wonderful title for something.
That's true.
Sam: Stay tuned folks for more details.
Kimberly: Exactly.
And until then you can stay tuned to my conversation, part of our Cal conversations about navigating the healthcare system as a person with a disability with Carissa and Keith.
(Music playing)
Kimberly: Welcome to Demand and Disrupt, a disability podcast.
I'm your host, Kimberly Parsley.
And I am here today for another one of our Cal conversations.
And I am with Carissa Johnson and Keith Hosey.
Carissa, say hello to the fine people.
Carissa: Hello, everybody.
Kimberly: Keith, how are you doing today?
Keith: I am wonderful.
Hello, everybody.
Kimberly: Well, thank you both for joining me.
I know it's a busy time of year, lots going on, but these Cal conversations that Carissa and I had last time was very popular.
We got a lot of good response.
So I thought we would do another one and we're hoping to make this a monthly segment.
So this month, our topic is navigating the healthcare system with a disability.
And when I brought it up to both Carissa and Keith, they were like, oh, yeah, we can do that.
We got stories.
So I think we all have all have stories, not all of them great.
So Carissa, you mentioned you had been a little under the weather recently.
Why don't you tell us about how things are going and what things you encountered?
Carissa: Well, yeah, last week I was pretty down and out with upper respiratory stuff and the UTI.
Yay me.
But that's always fun trying to get what they need to get so I can get my medication and get out because I'm in a wheelchair and need assistance.
So I have to take everything home and then bring it back within a timely manner.
And I have to explain that every time.
It's so annoying.
Kimberly: I bet.
Well, the important thing, are you feeling better?
Carissa: I am.
I don't feel like the dead this week, so we're good.
Kimberly: Well, that's good.
Now, I know a couple of time is so weird, but I think it was back maybe this time last year, there was a rule passed that was going to make it so that medical equipment had to be accessible for people with a disability.
In particular, one of the things that I found really disturbing was that so many people who were in wheelchairs weren't even getting basic things like being able to have access to a scale.
So one person said that she hadn't been weighed in like 20 years.
Carissa: I haven't been weighed in about five.
Kimberly: Really?
Do you have to go to a special place that has a scale that is accessible for you?
Or how does that get done?
Carissa: The last couple of times they did it because my doctor's office is in a hospital.
They would send me up to a floor with an empty bed and somebody would help me transfer to the bed and they would get my weight that way.
Kimberly: Yes, I'm hoping that that rule gets, I'm hoping that that gets followed through with, we all have concerns about whether things that were promised are going to be actualized.
So Keith, what about you?
What kind of things do you have to deal with in terms of medical care?
Keith: Well, so funny you should talk about scales.
It doesn't affect me personally, but I did happen to have a checkup yesterday with my primary care doctor and I always just tend to notice things.
And the scale there, which is the major university here, is not accessible.
So I wonder about that.
I will say just one more thing about accessible scales.
My day job, as many know, is working for the VA.
The VA gets an A plus for accessibility.
All of our clinics here in Louisville have accessible scales for our veterans to roll onto, which is really neat.
Kimberly: But as far as I'm sure that's partially owing to you, right?
Keith pushing.
Keith: No, no, no, no, no, they've had it.
That's the federal government.
Sometimes when they're following rules are pretty good with accessibility, actually.
But as far as I go, I see different specialists and there's a lot of jumping through hoops, oftentimes earlier this year, February.
And it took about a month and a half for me to get a new leg brace because I have to see an orthopedic surgeon before I go to get my ankle foot orthotics measured.
And then they have to send that all off and then they have to fix it and it comes back.
And it's a dance with the insurance company.
And I guess that's the best way to say it is my biggest struggle is a dance with the insurance company.
Carissa: Isn't everything in health care and is the insurance company?
Keith: Here in America, it is.
Kimberly: Right.
Yeah, it is awful.
Everyone can relate to that.
Whether you have a disability or not, it's awful.
Carissa, you and I talked about that last time on the cost of being disabled.
Health care is right up there.
I have to get regular MRIs of my brain and spinal cord.
And I did that last weekend.
They take about three and a half hours.
So they try to schedule me on weekends at Vanderbilt.
And so, I mean, the techs are really good.
Most of the techs are really good and they try really hard.
So, you know, you go in and they're like, OK, here's the table.
And I've done this a lot.
And I'm like, OK, which end do you want me facing?
Which end is the head?
You know, so they put me down.
And then I tell you, so like they know I'm blind because they've had to guide me into this room.
And then they put, you know, it's an MRI.
So they put the ear earplugs in and then start talking to me.
And I'm like, dude, you got to get those out because I can't see you.
And now I'm uncomfortable because I also can't hear you.
And I'm really getting disoriented.
So take those out.
Well, you need those for the MRI.
Yes, I do.
But we're going to do some stuff before we do the MRI, right?
I mean, they're going to put in an IV and things like that.
So that's frustrating a lot.
And then I think when you have multiple disabilities, it just complicates things all over the place, because I also don't have the use of my left arm.
And I mean, it's not even going to stay on the table.
Like it has to be strapped to me for the MRI.
And it's like, I honestly just want to wear a badge that they can scan.
This is my body 101.
OK, these are the things you need to know.
And it gets frustrating.
Carissa: Yeah, I can definitely relate to that.
Back in January, I had to have an x-ray of my hip and lower back.
And so I actually brought my husband because it's easier that way most of the time.
But there was the techs there.
Oh, we can handle it.
So Ben steps back because he's like, great, I get a break.
So they asked me, you know, are you ambulatory?
Can you stand and transfer?
Yes, but this is how I do it.
Next thing I know, two of them aren't listening to me.
And I almost hit the floor.
Can you come over here?
Because you just have to explain your whole self to new people all the time.
Kimberly: Yes, yes.
And tell me if you two find this too.
But a doctor's office or any kind of health care facility is the most inaccessible place that you could possibly be.
Like I walk up to check in and now there's no person there.
It's like a kiosk, like a touchscreen kiosk.
I'm like, what am I even supposed to do with this?
I mean, I had Michael with me, I had my husband.
So he had to do this.
But like, what about people who don't have someone with them and can't see?
Because those things don't talk.
Keith: I think too, kind of Kimberly, what you're starting to get to there is the medical community expects disabled people to have a companion with them a lot of times.
You know, I think they don't think the blind lady is going to be checking herself in at the doctor's office, right?
She must have someone with her.
Kimberly: Right.
Because we can't like dress ourselves and feed ourselves and those kinds of things.
So of course we have, you know, we have people with us all the time, right?
I mean, I need a handler.
Yeah, Keith, I think you're onto something.
I think you're right.
They just, they don't, there's no universal design in health care is there at all.
Keith: Which is where it should be more than most places, I think.
Kimberly: Yeah, I have said this before, but I never feel as disabled as I feel in a doctor's office.
Keith: I, you know, Carissa, you mentioned earlier, or maybe Kimberly said it'd be easier if I just had a barcode and this is my Captain Kimberly, you said it a minute ago.
This is my barcode.
But I, you know, I feel like I do when I go see a new doctor, I have to explain so many things, you know, I've never, I've never had a primary care doctor that knew much of anything about my club feet, you know, and, and even specialists because I've had so many surgeries on my feet, even specialists have been baffled by my feet, you know, I, there are many, many occasions where, and I call it the come see this, but I'll go see a specialist.
They'll start looking at my feet and, you know, because of the surgeries, bones have been moved and tendons have been switched.
And so just as a, for example, if you put a tens unit on my right foot, it goes in the opposite direction that it's supposed to.
And so I call it, I call it the, hey, come look at this.
Of course, the doctors are much more professional.
I need to get a professional consult from my colleague in the other room.
And I know he runs over there or she runs over there and says, Hey, you got to check this guy out.
His foot's weird.
And so I was some, a lot of times I feel like a, a, a zoo, you know, a zoo animal, an exhibition.
Kimberly: Yeah.
Carissa: It's one of those oddities, like the old circus kind of thing, like the bearded lady or whatever.
Kimberly: Yeah, exactly.
I have, I have had that happen also.
And it is, it is uncomfortable because I mean, sometimes they'll ask like, is it okay if I bring in a colleague to, but then it's also like, well, can you say no?
Keith: Well, you can.
Carissa: Yeah.
Kimberly: And, but then you feel like, you know, your doctor's not the person you want to piss off.
Right.
Keith: So, uh, well, and I've always felt like, am I gonna, you know, maybe these people learn something from, from bringing a colleague in, maybe they'll both learn something.
So I always say yes, but, but it is that odd feeling of, you know, he saw, he or she saw something they never saw before and want to know their colleague will never, uh, you know, believe them if they don't come show it.
Um, and so, yeah, I, I've, I experienced that a whole lot when, especially when dealing with my feet.
Kimberly: Yeah.
And it's, I mean, I've mostly my care I get mostly from teaching hospitals.
So, you know, to some degree you expect that you expect that that's how things are going to be, but then it does get tiring when it, you know, cause I'll often scan many appointments or have many appointments in one day.
And if it's the third time that gets old, when does medical care, like if you ever haven't had a situation where you felt like, okay, this is, this is really working.
Which has been very productive,, but which has been a positive medical experience or experience with the medical establishment.
I know, right?
Carissa: I really can't answer that question Keith: And all you get are crickets.
Carissa: That was all the answer we need.
Keith: Uh, I will say, um, I will say, uh, I had a really, really pleasant, good experience as a teenager, um, getting my ankle foot, foot orthotics, uh, kind of, I had them throughout the years, but as a teenager, I had a surgery, um, that did not correct my foot to the way, uh, that they expected.
And so, and so I, so I needed a new type of AF ankle foot orthotic.
I used to, I've had different things throughout the years.
Um, but I will tell you that the orthotics doctor that I went to, that I was referred to, um, and I stayed with him till he retired was absolutely wonderful.
He listened to me.
Um, he didn't just come in and, and, and decide what was best for me.
Um, and I, and I'm still wearing 20 years, 20 plus years later, almost 30 years later, we won't say how old I am now.
Um, but I'm still wearing the same design.
Now it's been rebuilt and transferred to different shoes and pieces of broken.
Um, it's Theseus's ship, right?
But, um, but it's the same design that this guy gave me 30 years ago, cause it's worked so well and he listened so well.
And I've been to other orthotists, I guess is what you call them, who, who have not listened so well, um, which I think is a lot of times our experience with the disability going to see medical professionals is that they don't want to, they, they're the educated person, um, and they don't want to hear our experience.
Um, and I feel like that's my biggest barrier to medical care.
Kimberly: I think, I think you're right.
Cause I, I think as we've often talked about the medical model of disability is if, if we aren't something that can be cured, then there's no way that a doctor can look at us and say, that's a success.
So I wonder if that's in their mind.
Keith: Yeah.
You know, I have specifically run up against that, um, you know, talk about a really bad experience before the pandemic.
I went to see, um, uh, I don't, I can't think of the specialist is a different type of foot specialist.
Um, you know, and I showed them what I have, you know, the lead brace.
I'm always looking for something that works better, even though this works well.
Um, you know, technology changes.
So we went through this whole process.
He's like, I got it.
I got the best idea.
Here's this thing.
We're going to get it.
He got it.
And it absolutely didn't work.
And he was, I'm so sorry.
I'm not, you know, they're always apologetic when there's something wrong with it, but you know, it's also like, man, if you, if you would have listened to me the first time you'd have heard this.
And I, and I think I learned my most important lesson for myself so far with, with medical care is he was working from a position of wanting to correct my gait and my walk.
I wanted comfort and the ability to walk farther or stand longer.
I didn't want to look like I walked like everyone else, which was his goal.
And since I've realized that when I, whenever I see anyone about my feet, I make sure they understand my goal is not to be quote unquote normal, like the rest of the walking world.
My goal is to not be in pain because I live with chronic pain and to be able to have more endurance and stamina when I do walk.
Um, I don't care if I look funny when I walk, I want to get to where I'm going.
Kimberly: And that's dependent on your medical devices, right?
Keith: That's right.
Kimberly: Yeah.
I had, for the first, I had my, after my scans, I met with the doctor and I've never been asked this question before, but for the first time he asked me, okay, what, what is it that you want from your care?
And I'm like, dang, that's the first time that anyone has ever asked me that, you know, Carissa: that's major.
Keith: I mean, what a transformative question to ask as, as a medical professional.
Kimberly: And also that we're just gobsmacked that it was asked says a lot too, doesn't it?
I mean, shouldn't that be the first question they all ask?
Yeah.
But I guess so many people are saying, I want a cure.
Whereas if you're disabled, you, you know, you're not, you're not getting a cure.
So my answer was, I don't want to have surgery again.
That's, and he was like, okay, that's, we're going from there, you know?
So Carissa, what about you?
Carissa: Well, I'm still over here amazed that anybody asked that.
That's, that is amazing.
But Keith was talking about what, you know, he wanted just to be able to walk comfortably.
I had a similar situation with my physical therapist a couple of weeks ago.
We're working on standing and my stamina and all that stuff.
So, but we, I pulled up on the bar like I normally do.
And she looks down at my ankles and my ankles fold.
They always have.
It doesn't hurt me.
I'm fine.
But she's like, immediately, oh, we've got to readjust.
And as soon as she did, I couldn't stand there any longer, but I couldn't, I couldn't explain to them that they just ruined what I was trying to do.
So we had to sit down and have a discussion about that afterwards because they wanted me to stand typically.
Well, my feet aren't typical and they're never going to be.
Kimberly: So did they listen to you as like an expert on your own body?
Did they, did they listen and be like, oh, okay, thanks for telling me.
Or were they like, Carissa: They did, but they are still afraid.
My ankles are going to break.
I stand on my sides of my feet since I was 10.
So if they're not broken by now, they're not going to break.
So sort of not really, but we did have the conversation.
Five out of 10.
Kimberly: I understand what you're say.
Carissa: Yeah.
I'll give them a six, not even a five.
Kimberly: Oh, look, you're so nice though, Carissa.
Now, um, what about, I don't know if you all have ever been in a hospital setting.
Do you find that there are things that have you all been like, had to be hospitalized and deal with disability?
Carissa: Not since childhood.
Kimberly: Okay.
Okay.
What about you, Keith?
Keith: I have once since childhood, um, but it wasn't related to, uh, that disability.
Um, it was the beginning of my discovering I had a generalized anxiety disorder.
Um, and I was having panic attacks and, and I did feel like a pin cushion cause they, they didn't know what was causing my physical manifestation manifestation of those panic attacks.
So, um, they, they ran me through everything MRI with, uh, contrast cat scan, uh, you know, 24 hours of, of being a push pin, but I didn't really run into any barriers.
Um, because it, it didn't really involve my foot.
In fact, I would, you know, they rolled me around in a bed to the MRI.
Kimberly: That's, that's a way to travel, right?
Keith: Like via bed.
Yeah.
Yeah.
Kimberly: Like a Cleopatra's barge kind of thing.
If I could get that sort of set up, I would probably do that too.
But yeah, with me, they have a sign on the door.
They usually, uh, patient is blind, announce yourself when you go in.
Um, I request that to, to be put on.
And that, that really does seem to help.
Also, most nurses are most hospital nurse nurses I have found are just overwhelmingly great.
I mean, they, they, they really are.
They, they tell me what they're doing.
Now, that's not true.
I don't think in, in just like a doctor's office setting, but they, they tell me what they're doing.
They let me know everything that's, that's happening.
So I have had really good luck.
I will say I have, I am concerned at the cuts to the national institutes of health that are being proposed now, because I have been a patient there in the past many times and they 100% have saved my life on more than one occasion.
I mean, like I have my disease, which I've talked about on the show is rare and it's not something you see, you know, in a Bowling Green emergency room.
So, I mean, I had a doctor from the NIH call when I was admitted into the emergency room, this has been 20 or more years ago and walk them through, this is what you do.
And we just want her stabilized enough to put her on a plane to get her here.
Keith: Oh, wow.
That's great.
Kimberly: Yeah.
I wish everyone had the experience of like an NIH situation.
It, it is so great.
And all the things that they do are, are just wonderful.
You know, I assume both of you have to go to like the eye doctor, right?
Keith: That's correct.
Carissa: Yes.
Kimberly: Do you all find that that is the most eye doctors are the most crowded, cramped places ever?
Like, I obviously don't go to the eye doctor, but I go with my daughter.
It's like, what have you got in these hallways?
Keith: They're like the DMV.
I agree.
They're a little like the DMV.
It doesn't matter what time you go there, what day of the week it is.
There's 20 people in the waiting room.
But, but I never feel like I wait too long.
There's a lot of people and it's crowded, but I, but I feel like I still get through pretty quickly.
Kimberly: I do.
There's all this equipment in the halls and the, the, the exam rooms are tiny.
And I mean, it's, it's kind of like a dentist chair situation in there, you know?
Carissa: So my dentist just like that, but I was a huge building.
So I don't have that experience.
Kimberly: Really?
Carissa: Uh-huh.
Yes.
Kimberly: So when you do like eye doctors and dental situations, Carissa, being a wheelchair user, are there special things you have to do?
Carissa: I will have, not for the eye doctor, but the dentist, I have to request a certain room that I know I can back my chair in and raise up so she can clean my teeth because I don't transfer.
So there has to be enough room for my power chair.
Kimberly: Uh-huh.
Carissa: She cleaned my teeth from my chair, which is nice.
Kimberly: That is nice.
Yeah.
Yeah.
Um, I asked my dentist, uh, cause I was curious what they would do.
And apparently there is a room like in the hospital here in one of the hospitals here in town that they, it is, uh, like accessible for people in wheelchairs to get their dental care.
Um, so, I mean, that's not ideal, but in maybe there's some dentists office that have, you know, kind of like what you're talking about, but for the dentist that I go to, he said that is where he would, would, would go with his patients.
Carissa: I kind of scout out new places to make sure that I can fit.
Yeah.
And then for other procedures and stuff, I may, uh, request a certain room, like a procedural room that I know that they have a table that lowers and all that stuff.
So, but I have to make sure and tell them that when I'm making appointments.
Kimberly: So Carissa, you said you were fighting off an upper respiratory bug.
Did you have to have a, like a chest X-ray?
Carissa: No, not this time.
Kimberly: Not this time.
Yeah.
Like, how would that get done in a, using a power chair?
How would that get, I mean, is it,
Carissa: I would definitely have to be transferred in the chair and be removed.
Kimberly: Really?
Uh-huh.
Okay.
Okay.
And I mean, do, do they have places that, that can do that?
Cause to me the, well, I guess they can, I don't know, it seems uncomfortable and you have to kind of contort, you know, to get a respiratory.
Carissa: Yeah, that I'll tell you something that's worse is a mammogram.
Kimberly: Really?
Yeah.
I bet.
Carissa: My mammogram usually involves three other people.
None that are related to me.
Cause they're trying to contort me into the machine from my power chair.
The machine lowers, but it lowers on my joystick that doesn't move.
So they're trying to have to shove me forward into the machine and all that stuff.
It's just a nightmare.
Kimberly: I bet.
I bet.
Keith: I applaud you.
Yeah, I know.
Right.
Kimberly: I mean, I applaud you for even doing it, Carissa.
I, I really do because I just don't.
And I recently read something that said that a lot of an article that said that disabled people are overwhelmingly diagnosed with, and they're diagnosed with cancers at a later stage because they aren't getting screenings.
Carissa: I'll be honest with you.
I skipped it last year.
I'm going later, but I, because it's so difficult on me, I, I've, I've skipped a couple of exams that way because who has the time or the energy?
And that's horrible.
We all need our healthcare.
Keith: Well, but I, you know, that's, that's, that I think that's part of this conversation is the inaccessibility of healthcare services obviously has had a personal effect on, I would venture to guess all three of us.
I know, Carissa, you just said, um, but you know, and that makes sense that then that statistically people with disabilities are getting diagnosed later or, and, and also, you know, elephant in the room, people with disabilities have lower lifespans.
Uh, and, and, you know, I think that has something to do with the inaccessibility of that, the healthcare system.
Carissa: I would definitely agree.
Yeah.
Kimberly: Were you all terrified during the pandemic when they started talking about vulnerable populations and comorbidities and the whole making decisions about who would get ventilators and stuff?
Carissa. Yes, that was nervous.
Kimberly: Yeah, me too.
That was extremely nerve wracking for me.
Keith: I, um, and, and on top of all of that, um, you know, so I still had to show up to work in person, um, uh, as a quote essential employee.
Um, so, you know, in the very beginning of, of that pandemic, when we really didn't know much about COVID-19 and people are dying and they're talking about vulnerable populations and all this stuff, and I'm still having to go to work.
Um, I was doing all of our primary because I was already out, and I didn't, you know, my wife and child were primarily home with work and school.
I was doing all the shopping.
I was going to all the public places those first couple of months, um, until, uh, you know, we kind of got a better picture.
And I honestly, I, you know, sometimes I wonder if I have, uh, a little PTSD from it, um, because it was so nerve wracking as someone with comorbidities, scary times.
Kimberly: That does sound scary.
And you have, you know, like you said, you, we, you have a wife and child and all, all three of us, we kind of met through the parenting book, a Celebration of family Stories of Parents with Disabilities.
The link to buy is on the, in the show notes for the podcast.
If you'd like to give that a look, we met through that talking about our parenting journey.
And I mean, we're dealing with all, all this stuff, plus all our children's healthcare stuff too.
Right.
Keith: Yeah.
Kimberly: And sometimes, sometimes I feel the, why you blind person, why did you decide to have children?
Carissa: You know, I thought about that in the book.
So look, read the book.
That's right.
Keith: Yeah.
I mean, and I was going to say probably more so for the two of you taking your children into, um, those settings than for me, just because our society has less expectations on fathers, you know, the mother is still, uh, widely considered the caregiver of the family.
Um, so I can imagine that you all have faced more scrutiny than I have.
Uh, in those situations as a male. Carissa: You know, Kimberly, I will give props to my son's pediatrician.
He has disabilities himself, but we've gotten somebody new a few months back and she's been wonderful.
She actually listens to me.
She listens to will every time we go, they make sure that, that we have the larger room and I don't even have to ask.
That is amazing.
So you were asking for positive stories with healthcare.
There you go.
Kimberly: Yes, that is, that is good.
That is a positive story.
Yeah.
And I mean, I, some of the doctors have been great.
A lot of the doctors have been great.
A lot of the doctors have been judgy to me.
Uh, so, you know, I won't, I won't say it's been perfect, but then what is when you're talking about healthcare, right?
Carissa: I had one doctor several years ago.
He kept writing that I'm a paraplegic in my chart.
I'm not a paraplegic for those of you that don't, I have cerebral palsy.
I finally had to switch doctors.
I couldn't stand it.
He didn't even get my diagnosis right.
Keith: Yeah, that's pretty bad.
Uh huh.
Kimberly: Carissa, since you mentioned that, why don't we define our terms?
Can you tell us what is the difference?
What are the differences are? Carissa: Between cerebral palsy and paraplegia? Kimberly: Yes.
And quadriplegia, all those things.
Carissa: Yeah.
So cerebral palsy does have, they, they do use the, I'm a quadriplegic person with cerebral palsy.
What that means is it affects all four of my limbs.
Now, if you're just going to say that I'm a quadriplegic, that means I can't feel from a certain part of my spinal cord down or I'm not able to move, it affects limbs in that way.
I have sensation and that's what he kept getting wrong.
He kept saying that I didn't after I would even tell him.
So that's very different.
Kimberly: Right.
Right.
And you don't want to go to that doctor.
You don't want that doctor to show up if you're in like an accident, having your diagnosis wrong and him having to treat you without you being conscious to correct him, right?
Carissa: That's, that would be a nightmare.
Kimberly: No, that's a very dangerous situation to be in.
Carissa: So I just felt like he thought, what's the difference?
You're in a wheelchair.
There's a big difference, dude.
Kimberly: Yeah.
Yeah.
Um, and that he didn't care enough to, Carissa: You know, no, he knew more than I did.
That big medical degree was on the wall.
Yeah.
Kimberly: I had a, I have a doctor who has said to me when I said I had Von Hippel and Dow and I wait and he says, yes, yes, I have a couple of patients with that.
I'm like, oh, you do not.
I am one of like two, three people in Kentucky.
You do not have several patients.
Carissa: So I think I talk about in the book, my primary care doctor, when I first started trying to get pregnant, he had a brother with cerebral palsy and he was like, he asked me if I wanted my birth control and I said, no.
And he said, why?
And I said, we're thinking of starting with him.
Oh, you don't want to do that.
Oh my God.
Uh, my, uh, brother has cerebral palsy and he has, you know, all this, that and the other and cerebral palsy.
Well, first of all, it wasn't his decision to make.
Let's make that perfectly clear.
Kimberly: Right.
Carissa: But second of all, cerebral palsy is like a big umbrella term.
It can affect so many different people in so many different ways.
So I'm not your brother, dude.
You don't know me.
Kimberly: Yeah.
It's that whole thing.
I know one person who's blind.
So I know all about blindness because you're all the same.
Yeah.
Yeah.
Right.
So any last thoughts, any, before we wrap up here, I think this has been a good conversation.
Any last thoughts about, uh, healthcare in America?
Keith: We all just laugh uncontrollably.
I know.
Carissa: Right.
Kimberly: I'm still trying to talk to my husband and then moving back home.
He's British.
You know, they're having their own problems there, but I, is it, is it better?
Does what does he say?
Carissa: Uh, he says it's not any better.
It's not any better.
Kimberly: That's, that's what I'm hearing lately.
Keith: Also, I think, um, you know, uh, my, the only thing that I really have to say is if there are medical professionals listening to this podcast, um, I think that, that question that Kimberly got is super important.
Um, you know, what is most important to you?
What do you want to get out of this care?
Um, because it might not be what you think that person wants.
Um, you know, ask, don't assume.
Carissa: And anybody else, you know, just keep speaking up.
Your medical professionals may have degree and experience, but you know your body and you know what you're able to do and what you don't.
So don't let them take over.
Uh, keep speaking up for yourself.
Kimberly: Yeah.
And that we have to be advocates for ourselves all the time in the, in healthcare.
It is unfortunate.
Um, and we're seeing people when we're at our most vulnerable, we're scared.
We don't feel good.
We're sick, whatever.
We're, you know, we just don't feel like advocating at the time.
So I don't know.
Maybe some of our listeners, if, uh, you know, if you're going in for a mammogram, maybe, and you, you know, you, you feel fine.
It's just, it's just a regular screening.
Maybe say, Hey, how would this work for someone who's in a wheelchair?
And maybe if we all bring these things up, then, you know, change over time, we can hope, right?
That's all we got.
Keith: Let's, let's keep asking the hard questions, right?
That shouldn't be hard.
Kimberly: Yeah.
So maybe if we all, all keep doing that sort of thing, things will change.
Well, Keith and Carissa, thanks for joining us today.
As always, it's a great to hear you on the podcast.
You both bring so much insight.
I appreciate it.
And we will hopefully be back in July to discuss another Cal conversation topic.
(Music playing)
Kimberly: Demand and disrupt is a production of the Advocato 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 Anken for the use of his song change.
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Thanks everyone.