Grace, a 31-year-old polio survivor from India (paralyzed at 4–9 months), debunks anti-vaccine myths by detailing polio’s pre-vaccine devastation—iron lungs, leg braces—and its lingering effects like chronic coldness due to hypothalamus dysfunction. She recounts navigating inaccessible ORs in -23° wind chill, forced reliance on others, and past sterilization coercion (e.g., 2022 Medicaid forms). Advocating for universal accessibility, she praises Shriners Hospitals for free care but criticizes small towns’ neglect, linking vaccination progress to dignity. Follow her @candid_kitten for polio advocacy. [Automatically generated summary]
The podcast would have a better name if they weren't all taken.
I'm Spencer, your host.
And today, we're going to dive into something that's a little different for this podcast, but basically, I don't limit myself to any one thing.
So here we go.
Polio is one of those diseases that has, that is a big reason why we have vaccination programs at all.
As such, it gets put into a lot of anti-vaccine conversations online.
I've regularly heard unsubstantiated claims about polio being both not that big a deal and also not caused by a virus at all and preventable by simply better hygiene.
That the anti-vax messaging tends to accept any answer at all, except actual reality, is a big reason why I consider them to be following a reality-denying ideology.
Today, I have a special guest who is here to tell her story about polio.
Hi, my name is Grace.
I'm a 31, almost 32-year-old polio survivor.
I was born in India, which is where I contracted polio somewhere between four and nine months of age.
And I was raised in St. Louis, Missouri, and was all my medical care done through Shriner's Hospital.
They were initially started as a hospital for polio patients in the 1920s.
And since then, I have aged out of their system and am enjoying the American medical system, unfortunately.
It's not the best, but it has provided me with generally what I need.
Yeah, generally what you need.
Okay.
So you contracted polio as an infant.
Yes.
Do you know much about whether this was generally also happening in the States before we had vaccines, right?
Yes.
There was a lot of childhood polio.
Yes.
So in, I would say, I can't speak today.
Before the 1950s, which is when polio vaccines really ramped up, polio is a much bigger problem.
You would have people who were in iron lungs.
You'd have people who were paralyzed, where you'd see those leg braces that were worn on the outsides of clothing.
They were attached to shoes.
I mean, everyone knows the iconic picture of an iron lung.
But then the polio vaccines were approved.
They were tested and approved.
And everyone said it was a sigh of relief for the whole country, basically.
My parents were born in the 40s, 42 and 46.
So they definitely remember being lined up at school getting polio vaccines.
My mom remembers her grandfather or her father, my grandfather, being very, you know, very excited to sign that waiver for them to get their polio vaccines.
Yeah, and it's we enjoy a world, generally speaking, in North America without polio.
That's why your story is so unique here, right?
What does it entail?
Like you, you have polio, you have like there's, I mean, the virus comes in and then there's a disease that comes as a result of the virus and that has affected your life.
What is that like?
Yes.
So the way polio affected me is I unfortunately got paralytic polio, which is the most rare kind.
So that tracks for most of my life, unfortunately.
So my left leg is paralyzed.
When I walk, I wear a full-length leg brace and that basically literally braces my leg up so that way I can put weight through it and then I can walk.
It's honestly, it's fairly efficient.
It's, I have a wheelchair now, so I have become more akin to that because why walk when I can wheel?
It's faster.
It's more efficient, but I do enjoy going out for walks.
I do enjoy moving around a bit.
So now that I have my wheelchair, I try to 50-50 it a lot of times.
If it's, you know, just going between my office and the bathroom, I'm going to use the wheelchair.
It's faster.
But there are times at my job when I've sat around for a few hours and just haven't had a chance to get up.
And then I absolutely love getting up and walking and moving around.
It kind of gives me a good balance of kind of doing both, really.
The other ways polio affects you are much more invisible in that respect.
The biggest thing that we complain about is being constantly cold.
So our capillaries do not know to close down and keep our keep the blood in our extremities and closer to our core.
So we get cold really easily.
But the polio virus also affects your hypothalamus.
So you don't have the ability to temperature regulate.
So when I get overheated, I don't sweat to cool off.
If I get too cold, which is more typical, I don't shiver to warm up.
So I love space heaters.
I love heated blankets.
I work in an OR.
So there's an abundance of heated blankets right now.
Wow.
That's interesting.
Oh, temperature regulation.
It is fascinating.
I've always been a very cold person.
I remember as a child, and my mom remembers this, just in the winter, she would just sit there and cut my foot in her hand for hours.
And it was just, it's never warm.
It would just always be ice cold.
Does that affect sweating as well or just the blood flow things that would regulate the heat?
So I don't really sweat that much.
I will get kind of cold and clammy, but I don't sweat like a normal person would.
So like if I go to the zoo in the middle of the summer, I just have to remember to drink water or I will just overheat.
Wow.
All these little extra things.
I mean, this, I mean, thankfully, this illness is exotic in this part of the world, right?
Yes.
So do you find that you have to explain this a great deal to a lot of people or even to doctors that you have?
Physicians, it depends on.
I am very lucky to still see my pediatric orthopedic surgeon who I saw through Shriners in the 90s.
He still sees me on a as needed basis through WashU, which is fantastic.
He's over 80.
He is a phenomenal physician, phenomenal surgeon.
And he just has this knowledge of polio and knows that he's one of the few people that I am close by enough to see that understands polio.
My physical medicine and rehab physician where I live, she is also wonderful.
Her brother is paralyzed.
And so she actually has some knowledge, personal knowledge of paralysis and just how functioning in an able-bodied society as a disabled person is very disadvantageous.
And so she realizes that her place in my medical life is very much to help facilitate my life and me getting on in a world that's not made for me.
So she writes orders for things like shower chairs and bars and my wheelchair.
She's not trying to fix me.
She's trying to fix the world to me.
Yeah.
That kind of pivots nicely to the second half of this that we were talking about before we agreed to do this, which is that I wanted to talk about more than just your polio story.
And when I looked at your Twitter feed, I found immediately a perfect thing to additionally talk about because it fits right in.
When we look, when society looks at disabled people, there's a a sort of judgment that comes and we've called this judgment ableism, right?
The judgment of people based on their ability, that they have some other level of worth because they also have some other level of ability or lack of ability.
And it's difficult to move away from that, I think.
I mean, it's completely unfair, but absolutely.
Yeah.
In some situations, we're still doing this, you know, like when you're at a job, you're going to get judged based on what your level of competence is at that job.
And so we almost come by this naturally, except that it's still a disgusting thing to do.
So we have to kind of separate this nicely from situations where we would want to recognize a person's competence from doing the opposite side of that and saying, well, obviously I'm going to judge a person as incompetent based on this disability that they, I feel they obviously have.
So what are your thoughts on that?
First take on this.
I mean, you must run into this all the time, right?
Oh, absolutely.
I mean, I've run into it at work multiple times.
And luckily, my job has been very supportive.
If people have been, I mean, ableist effectively.
We had a situation at my job where I work in an OR.
And so we have a lot of swipes.
So you don't have to touch the doors.
You just swipe your hand by them and the doors open.
So it helps with sterility, but it also just kind of helps keep people flow going if we're not having to go open a door while pushing a large object or pushing a patient's bed around, things like that.
Well, we had a door swipe that was consistently blocked by a stretcher bed.
And for a while, I was only using my wheelchair at work.
I was not wearing my brace at all.
And I could not get into one department in my large department.
And I was like, this is a problem.
So I addressed it with, you know, one of their leads, one of their charged nurses.
I addressed it with their leader.
And at one point, I was told, well, we've been putting beds there for seven years.
So why, why should we have to change now?
Yeah.
And I just looked at this lady and I was like, well, sorry, not everyone in your department doesn't walk.
That's not my fault.
But I need access over here to do my job.
Yeah.
Move the door, move the stretcher bed.
And really the funniest part was the structure bed only needed moved four or five inches one direction or the other just so I could get to this door swipe.
And I was fine getting the door swipe, backing up and then going back out around the bed.
I just wanted to be able to easily access the door swipe.
Now they just don't put it there at all, which is even better.
But it went up the chain.
Administration had to get involved.
And my administration now checks in on it very regularly.
She puts it in a PowerPoint to that department every week.
Remember, you cannot block the door swipes with beds.
It's not just for me because I'm disabled, but it is also for the rest of the staff.
Well, it's possible some other staff members said, oh, it's so good that that isn't there anymore.
Like, you know, and they didn't say anything because they were able to do some other little thing that got around it.
Might have been still annoying, right?
They were able to open the door, the door was heavy.
That's most of my problem.
The doors in my department are fairly heavy because many of them are automatic doors, so they have that mechanical, yeah, right.
And I'm a small person.
Also, why would I open a door when I can make a machine open the door for me?
Yeah, I've wanted to live in a Star Trek universe since I first started watching Star Trek.
They don't even have to tell the door to open, it just opens.
That sounds even better, honestly.
Telepatic anything would make my life so much easier.
Tell me about it.
Oh, a pipe dream.
This is great.
There have been some arguments in the past about accessibility requirements that are, I mean, generally speaking, we have rules about this for public buildings and etc.
Some people have made arguments in the past, what I call capitalist arguments that are appealing only to the capitalist sense that are that's generally at the pervasive layer in our world, where they'll say things like requiring businesses to provide access to have wheelchair ramps, have elevators of a certain size or whatever is an onerous burden on these capitalist ventures.
And so they shouldn't have to provide them because of this.
And I think that this is a this only makes sense from the capitalist perspective.
It doesn't make any sense from the community perspective, right?
Because as soon as you do this, you are saying that it's okay that I mean, the sort of Ayn Randian selfishness perspective is that no one should ever be expected to bear any part of anyone else's burden.
But as soon as you look at the way a community is made up, everyone has to bear a little bit of everyone else's burden in order that we can just live together and get along.
So, of course, we have to have businesses put in wheelchair ramps.
We have to have elevators of a certain size that wheelchairs will fit in there and that other equipment can fit in there if needed.
Do you still like in your life?
Do you ever experience any of these arguments still, or are they more or less gone from our world?
Do you think?
Oh, they're not gone from the world in any capacity.
I am finding out about even more of them now since I've had my wheelchair for the last 10 months, I think.
Yeah.
I'm in a very weird spot because if I put my burst on, I can walk.
And I'm very functional when I'm walking.
I can do stairs.
I can go up and down them.
Is it great?
No, but I can deal with it.
So, like, I can, if I had my burst on, I could easily overcome any of the accessibility obstacles that are thrown in a full-time wheelchair user's way.
So, a good example of this was my best friend and I were checking out a new bar in town.
It was this little British bar.
And we were like, hey, let's go here for your birthday.
Wait, let's make sure the ramp is good enough for our friend to get up it because I'm not going to use my wheelchair on his birthday because it's easier, but she doesn't have a choice.
And we want to make sure that she can get herself up the ramp or that someone can assist her up the ramp.
Yeah.
And so that was one thing where we were like, let's go check this place out first before we invite her and then find out that she can't get into the building and then she can't be included.
And then there's been times where I've just realized, oh, that's that's not very functional.
There's a couple stores downtown where I live.
It's, I live in central Illinois.
And so Lincoln has a very big influence here.
Good way to put it.
So all of our, you know, all of our downtown and our buildings are old.
They don't necessarily have to be up to ADA standards because they were built in the 1800s and earlier.
And then I try to get into some of the doorways.
And I'm like, what in the world are we thinking?
Like, I'm having to like cuck myself into my chair to get through a doorway so I don't like scratch my hands.
And I'm like, well, okay, it's an 1800-year-old building.
Yeah.
That's great.
But could you wind the doorway so I can get in, please?
Yeah.
Like, it's very simple things like that.
But then I also do understand from a structural standpoint, modifying a building from the 1800s to put in a giant elevator.
Yeah.
You know what I mean?
Like there, there's a lot of people.
It's not so easy to do.
No.
And there's so like I do try, like, there's a lot of logistics that go into modifying buildings.
But at the same time, people have to understand this is the flip side.
People don't see disabled people out in public because public is not accessible to disabled people.
Yeah.
That's the kicker.
And once, once disabled people are out of sight, they're usually also out of mind.
And there's less reason for anyone to make any push to make anything better for them.
And we go back to your capitalist argument.
That is right there.
We've circled back around to it.
Right.
If the disabled people aren't out and in public, what do the businesses, what do you know, the landlords, the owners of these buildings, what is their incentive to modify things for a disabled person if we're not going out and about and utilizing these things?
But the ultimate reason we're not utilizing services is because I can't physically get into your services.
If I can't get into your business or your shop or your restaurant, that's a you problem.
That's not a me problem.
Yeah.
It's not my fault I had polio and can't walk, but it is your fault that your business doesn't care enough to make sure I can also spend my money there.
I'm a paying customer.
If you want a paying customer, make sure that I can get into your building.
And I would want to, you know, buy your food and I would want to buy your services.
But if I physically can't get there, then there's a sale you've lost.
So that brings back the argument of community.
If you put a little more effort into your building, you put a little more effort into your community and you make it accessible for everyone, then you are going to ultimately get more sales.
You're going to get more money because you have a whole population that now feels like they're able to go out and can do things.
Yeah.
And I think that's one of the best parts about accessibility requirements is that when we have people who have whatever the disadvantage is in whatever way it is, if they feel like they can just still go and do whatever, then I think we're still, you know, like we're going to make it out of this okay, if that makes sense.
Like, if instead we're making, like, if we're making conscious choices to not provide anything that allows people who are disadvantaged from being included, from making it into buildings, even to even do anything in them, whether it's a restaurant to go eat a meal or a doctor's office to go see a doctor, a lawyer's office to go see a lawyer, all of these things, or just to get a job, just to get in the building, just to work there.
If we're additionally closing additional doors, there's already doors that are just closed just because of their disability.
Why should we become careless or not careless?
Careless isn't the right word.
Why should we?
What's the word I'm looking for?
Honestly, careless works.
It's it comes down to people being careless and again, not caring.
Yeah.
Another way to phrase it, but that's what it ultimately comes down to.
They don't care about beyond their bubble, their world of, well, I can do this.
So why can't someone else?
Right.
Well, I'm sorry, my wheels don't go upstairs.
I mean, technically they can.
I've seen people.
I've also seen people fly back down the steps backwards and it doesn't go very well for them.
I've seen two people do this successfully and the stairs were like very shallow and very deep.
It's not recommended.
Same way as using a wheelchair on an escalator.
It's not recommended.
No.
Have I seen people do it?
Yes.
Yes.
Oh, yeah.
It doesn't make it a good idea.
It's, you can only do it on very narrow escalators where you can hold both sides and you basically just hold on as best you can and you get pulled up the escalator and I will take an elevator every single time.
But the elevators at my job do not like to work.
Luckily, there's like eight sets of elevators throughout this whole hospital.
So like one set of elevators is always working.
But there's also always signs in front of elevators that say they're not working.
Excellent.
The other night, that's that did happen to me the other night.
My co-worker forgot her badge.
And so I offered to walk her to her car so she could, she had to badge through like two points to get back to her car.
So I walked her there.
One of the points was a stairwell that also has an elevator and it was negative 23 degree wind chill.
The elevator was not working.
And we both had to go up a whole flight of stairs.
It was absolutely awful.
And the funny thing is we made a joke about it because I wasn't, I told her I was just going to give her my badge and she could just give it to me the next day.
And her argument was, well, I don't come into work till later than you.
Funny thing was, I didn't work the next day.
I could have given her a badge.
I could have avoided the entire tracing through the hospital and the stairs.
But I'm a good person.
So.
Yeah.
But ultimately, proof that when elevators don't work, when assess, when you know, the accessible option doesn't work, if I didn't have my brace on, we would have been in a very weird situation.
I mean, we could have figured it out.
She could have like put her shoe in the door and like kept the door open and ran my badge back to me.
But there are so many situations where you don't realize, oh, this is an accessibility issue until you are in the accessibility issue and you're experiencing it yourself.
And you're like, oh, well, that's a concern as you're standing there in negative 23 degree wind chill and the elevator button is not working and the elevators are not running.
And you're like, oh, we're going to take stairs now.
Whoa, the stairs are just as cool to see outside.
Right.
So I do have one other.
Oh, yeah.
One other aspect of the this, the accessibility issue that I, I didn't have in any of the notes I sent you.
I just thought of this this morning when I was kind of running it through my head that there's an aspect of this it has to do with personal dignity, right?
Like just allowing a person to go the places they want to go and retain their own level of dignity about being able to do things for themselves without needing help with everything.
Because, you know, I mean, in conversation is important.
Yeah, absolutely.
It's important, right?
Like, like you don't want to be able to.
Yeah, you don't want to have to need help for everything you do, right?
Because you don't want to feel like you're a burden on other people, I imagine, right?
Oh, exactly.
That's that is a huge portion of accessibility is that you've hit the nail on the head is me being able to live my life in the way I want to live my life without having to rely on someone else.
Yeah.
Like I, my boyfriend's fantastic.
He does all of the housework.
So I do not have to worry about a single cent of it.
So I don't have to get up and use any extra energy.
He takes care of all of it, which is fantastic.
But there are days when I would like to be able to just do normal things.
Yeah.
But then I also try them and then get exhausted so quickly.
It's not even funny.
I will sweep and within like 10 minutes, I have just severe back spasms from the motion of sweeping.
And I'm like, well, that's not an activity.
It's like one of the few chores that I can do, but I just don't do it that often.
But it does come down to you don't want to feel like a burden.
You don't want to feel like you rely on someone to do things or to get places.
And so that was my problem at work is why are you parking the stretcher bed in front of this door swipe?
And that makes me reliant on someone else to just get a door open for me.
Like that's not fair.
And it's funny because my friends always say all the time, you know, hey, do you need me to carry that for you?
Do you need any help?
And I will sit there with food in my lap and like a, you know, a tea in my hand and reeling myself with one hand.
And people are like, what are you doing?
And I'm like, I can do things on my own.
Am I going to look funny doing it?
Or am I going to look stubborn doing it?
Absolutely.
But I still want to do things on my own.
My coworker at night, she always is like, you know, I can get doors for you.
You know, I could open that door.
And I'm like, yeah, but I'm already in front.
I'm not going to, you know, I feel bad stepping aside, making you open the door and then me going through it.
Like, I can still open the door.
It's just different.
Yeah.
Yeah.
And I think that's an important thing to remember is that when we're making these little changes in our world to make things more accessible to people who are disadvantaged, we're not only just allowing them the physical ability to enter those spaces.
We are helping them retain some level of their own dignity.
And I think that's important.
Well, your own personal autonomy is important.
Yeah.
I mean, like, I, one thing that I very much value about living in Illinois is Illinois values my reproductive rights.
They value my rights as a human.
And so I get to make medical decisions for myself.
And as a disabled person, that is not always guaranteed in any capacity.
There are a lot of people, you know, who have power of attorney or personal guardians who do make those decisions for them.
And I'm very lucky that the polio has only affected me in a physical manner because I unfortunately cannot speak for disabled people who are affected, who have personal guardians or powers of attorney because I don't have that.
But I could understand where it could be quite frustrating though, too, where if someone says, hey, you know, if you aren't on good terms with your power of attorney or, you know, you aren't agreeing with, you know, your needs versus what they think you need because they're not a disabled person.
When I had my self-injectomy, my tubal, I had to sign this form that I thought was very interesting to have to sign in 2022.
It was basically saying my physician was not forcing me to get sterilized, that it was my decision to be sterilized because I was on Illinois Medicaid, which is, you know, it's Medicaid is often for disabled people, low-income people.
Because I was on that, they made me sign a form attesting to the fact that I wasn't being forced to be sterilized.
And I made a joke and I was like, I'm pretty sure I begged my doctor to do my tube.
I basically said, please, can we just do a tuple?
Let's just get this done with.
And she had no problem with it.
But she was like, you know, because you're on Medicaid, you're going to have to say that, you know, I'm not forcing you to do this.
And I was like, no, I'm pretty sure I'm forcing you to do this.
Like, please, please take them out.
But it comes back to in society.
I don't even want to say years and years ago, because honestly, it probably wasn't that long ago.
Disabled people were sterilized because able-bodied people didn't want us to reproduce and pass on our disabilities.
Granted, my disability is not pass on.
I can't pass on polio.
Like if I had a child, my child would be able to walk just fine.
But it still comes down to the fact that disabled people were forcibly sterilized at one point so that they could, you know, decrease the disabled population.
Yeah.
Terrible.
And so when I have the ability to use my personal autonomy and my voice to speak up for things that the disabled community needs, that's what I do because it's not fair that I can still walk and use my wheelchair, but my friend can't.
So she can't get into this building.
I should be able to get into the building just as easily as she can, no matter what method of getting around we are using, whether it's an able-bodied person walking, me using my leg brace, or me and her using wheelchairs.
Yeah, I agree.
It should be just a basic level of societal participation.
And that's why I tend to like bigger cities more because they generally have that more open mindset.
Like if I'm going around downtown Chicago, I'm probably not going to run into a ton of accessibility issues.
Like I'm going to run into some, but more often than not, things are going to be more accessible.
But if I, you know, go to some small little town in central Illinois or anywhere in Illinois and go down to the main street where all of the buildings are much older, I'm going to run into a lot more problems, unfortunately.
And which also is just unfortunate because small, cute little main street towns, they're so, they're so pretty.
They're so fun.
Their buildings, the insides are gorgeous.
I would love to explore them, but they, you know, may not have those, you know, they either may not be required to by the ADA because the buildings were built before a certain year, or they, you know, may not have the funds to do it, which is where, you know, it comes in with the government saying, hey, we should be giving money to these buildings that don't have, you know, businesses that don't have the funds to make themselves accessible on their own.
We should help make themselves accessible.
So then disabled people can enjoy that business too.
You know, I shouldn't be kept to big cities where people have the money to provide accessible accommodations and not be able to go enjoy small towns.
Yeah.
So again, circles back to economy.
So I think we should probably wrap this up.
Just as a.
I would say hit everything you want to from your podcast perspective.
Yeah.
Was there anything that you in particular wanted to note or mention or plug even?
Any other things?
I never know how to plug anything.
I mean, I have my Twitter and that's pretty much how I do all of my work, all of my advocacy and, you know, screaming into the void.
So you're welcome to follow me.
I mostly post about having polio.
And yeah, I support.
I mean, honestly, if I'm going to plug anything, I'm going to plug Shriners.
Let's be honest about that.
You know, if you, my boyfriend's the one who just said it, but he makes a good point.
Shriners, if you're going to go support anyone, obviously follow me on Twitter.
You'll get to see my cats.
You'll get to see my musings about polio and my screaming into the void.
But if you're going to go support anyone, if you're going to go, you know, send money somewhere, some donation, send it to Shriners.
They are, they were started for polio.
They were started to take care of children.
You know, they were started to take care of children who were disabled.
And that's what they've done their whole lives: orthopedic and burn care for kids at no cost to the family in any capacity.
My family, my family is wealthy.
They had money.
They had no problem, you know, being said, told, Hey, we're going to bill this to your insurance and you're going to get billed for it.
But that never happened.
We never saw one bill from the hospital in the 25 years that I was a patient.
Nothing.
And I had probably, I would say, at least 10 surgeries specifically with them.
A few of them, very major ones requiring long hospitalizations of six weeks.
We never saw a bill for that.
They took care of all of my medical care for years.
So if I'm going to plug anything, it's going to be Shriners.
Okay.
And what's your Twitter handle?
It's a candid underscore kitten.
Okay.
Great.
Just as a closing reminder: polio is real.
It's not great.
We want to keep it stopped as much as we can, not just here, also everywhere else in the world.
Supporting vaccines is a great way to do that.
My dog likes the microphone.
I think your dog wants to help support a polio eradication.
Yeah.
Yes.
So, as I said, a polio is real.
Support vaccines to keep polio as close to eradicated as possible.
Maybe someday we could get rid of it the same way we got rid of smallpox.
Maybe.
Hopefully, we keep smallpox totally gone because that was also terrible.
And support disabled accessibility requirements because everyone needs dignity.
Yes.
I personal able-bodied people value their personal autonomy and ability to function without others and not being dependent on others.
Disabled people should have the exact same expectations of society.