Shonna Counter, diagnosed with Spinal Muscular Atrophy Type 3, imparts her profound journey of resilience and self-discovery in this enlightening conversation. From her early childhood experiences to her current endeavors as a multifaceted individual, Shonna emphasizes the importance of viewing disability through a lens of aspiration rather than mere inspiration. She articulates the necessity for society to move beyond superficial narratives and recognize the complexities of living with a disability. Shonna's advocacy work underscores her commitment to creating a more inclusive environment, challenging misconceptions, and promoting accessibility. Through her candid storytelling, she invites listeners to reflect on their perceptions and encourages a deeper understanding of the capabilities that exist within the disabled community. Shonna Counter, diagnosed with Spinal Muscular Atrophy Type 3, eloquently recounts her journey of navigating life with a disability in this riveting episode. From her childhood, where her condition went undiagnosed for years, to her eventual discovery of her diagnosis, Shonna shares the pivotal moments that shaped her resilience and determination. Her narrative is punctuated by anecdotes of defiance against societal expectations, where she engaged in activities such as water skiing and roller skating, despite the limitations others placed upon her. As the discussion unfolds, Shonna articulates her profound discontent with the notion of being labeled as “inspiration porn.” She emphasizes her desire for recognition that transcends her disability, advocating for the idea that she should inspire through her aspirations rather than evoke pity. This perspective is particularly poignant as she shares her varied career experiences, which include acting, writing, and community advocacy, illustrating her multifaceted identity and her refusal to be defined solely by her physical challenges. Moreover, the episode delves into Shonna's advocacy work, where she passionately discusses the pressing need for accessibility and representation of individuals with disabilities in mainstream media. Her personal experiences navigating a world that often neglects inclusivity provide a critical lens through which listeners can examine the societal structures that perpetuate barriers. Ultimately, Shonna’s story is a powerful reminder of the strength found in community and self-advocacy, encouraging others to embrace their unique journeys and strive for a world that is more inclusive.

Takeaways:

• Shonna Counter discusses her experience with Spinal Muscular Atrophy Type 3 and how it has shaped her life and ambitions.
• The podcast emphasizes the importance of seeing individuals with disabilities as aspirational figures rather than mere sources of inspiration.
• Shonna shares her journey of advocating for accessibility and the challenges she faced in navigating spaces that are often not accommodating.
• The conversation reveals how societal perceptions of disability can lead to condescension, highlighting the need for greater awareness and understanding.
• Shonna's story illustrates the resilience and resourcefulness developed through navigating life's challenges with a disability.
• The episode encourages listeners to reflect on their own perceptions of disability and consider the broader implications of representation in media.

Companies mentioned in this episode:

• Aguiar Professional Training

The following is a productions original series.

Hello, hello, hello.

Welcome to Walk and Roll Live.

Nice to have you back.

I'm Doug Vincent, joined by Addie Rich.

I'm a polio survivor and Addie is plumb out of her mind.

No, no, that's not it.

Yeah.

Is that it?

No.

In addition to a little bit of lunacy, I have cerebral palsy.

So.

Very nice mind a sound container.

Not so much with the gravity checks.

Well, good to see you again.

You know, our weekly visit at least sometimes a couple times a week.

Everything good with you?

Yes, thank goodness I'm a human again.

If you've been listening for the last few weeks, even though we pre record the episode and then add the open and close, if you listen to the open and close, you can how I've been feeling.

And you know what, there's some episodes coming up where you sound pretty rough.

Yeah, yikes.

I forget.

I forget those ones drop.

So, yes, I am back to my human self.

I the modern mag magic of medicine as you kind of had to do and take a humble.

Take a fork for your humble pie during your hospital say, I kind of didn't, thank gosh, get that deep into it.

But I definitely needed medicines to make my lungs agree.

Yeah.

For a while you feel like, you know, I'll just ride this out a little bit, you know, it'll come around.

But then, yeah, you get to a point, you know.

No, no, I need to.

Wow.

Yeah.

So finally, you know, surrendered to that.

Almost finished with my steroids.

But the joy of steroids to make you realize how a deep breath feels.

Yeah.

Yes.

You know, I was just for some reason talking to somebody in the last couple of days about life expectancy.

Yeah.

You know what it is now?

You know, it's probably closing in on 100 or whatever, you know, but you know, back in not that long ago, probably 100 to 150 years ago.

Yeah.

Oh, man.

I mean, you were, you were.

You get a simple infection, you know, there's no penicillin, then you could, you could die.

Oh, yeah, yeah.

Oh, yeah.

We.

I, I get on that kick myself sometimes because, you know, people are like, I like genealogy and I'm really fascinated by genealogies and stuff.

But when you do the math in the your head and they're like 39 and whatever, and you're like 39.

But then you're like, yes, they didn't have modern medicine.

Childbirth wasn't this way.

It is like there weren't the interventions.

So 39 was actually like really Amazing.

Where the people that lived to be in their late 70s to 80s, that was a huge triumph.

120 Years old now, right.

It's almost like a miracle, right?

Yeah, for sure.

Well, good, good.

Anything fun now that you're getting a grasp on your health?

Been able to do anything fun?

I mean, nothing amazing.

The weather is kind of going from, like, temperate to here comes hell.

Yeah, we're starting to get that.

Turn around.

Yeah, exactly.

So, you know, just bracing for that.

Getting ready to go and visit my sister in a few weeks.

Very nice.

Very nice.

I'm excited.

How about you?

How was the week?

Good, good.

So the sister's all settled in?

Kind of, yeah.

Yep.

Sister settled in.

It's time for her dog to go back west, pack up her little bag.

Of dogs, her long stay with aunt and.

Yeah.

What's your name again?

Addie.

Yes, it's closing.

The dog Hotel.

The dog hotel, yeah.

The bed and breakfast there at Addy's house.

Yes.

Yeah.

Yes.

How about your week?

How was that?

It was good.

Try to think.

You know, the usual kind of dinners with friends and things like that, but nothing big, you know, just keeping busy.

Further work on the.

I'm just.

I'm trying to learn a bit of my.

More about artificial intelligence.

Oh, yes.

Yeah.

And really, you know, instead of just using it like a Google, like a search engine, you know, I'm trying to ask it to do things for me, real things for me.

And part of that is to automate a lot of the things that I do here that take up a lot of time.

I mean, I. I love doing this, but, you know, it's like, you know, think about your job is a lot of clerical work.

So, you know, if you took that away, you wouldn't have a job.

But.

But, you know, with what I'm doing, there's a lot of clerical stuff is.

Is not the fun part.

You know, this is the fun part.

Getting to talk with you and talk with guests.

Yeah.

And all that.

The monotony, we want to hand it.

The monotony, that's just like.

It could be done while we're asleep.

Yeah, exactly.

And that's what you can.

That's what you can do.

I've set it up to where it's going.

It's.

We got it set up and really haven't started to test it yet, but, you know, so Chachi BT can check my mail.

And then when I get up in the morning, there's a.

There's a report, you know, prior prioritizing, different things you know, this is A, and you want to address it now.

And B is, you know, and C is like all the, the newsletters that you don't even know how you subscribe to and all that stuff.

Oh my gosh.

I know.

I have found a, I have tested, I've been testing an AI thing for the new for email, which has been amazing because I freaking had like 40,000, 40,000 emails.

Like literally.

Because it's all just crap that you're like, okay.

And you never have the time to.

40,000, You know, the time to get through that.

And no.

And, and if there are people that like, blast you quite a bit, like Monday, Wednesday, Friday.

That's.

You know what I mean?

So finally getting a bot to go in and look and say, you haven't opened one of these for six and a half months.

Would you like to unsubscribe?

Well, yes, I would.

Yes.

And you've survived without opening.

Yes, exactly.

What they were saying was not interesting because you were not opening them.

So.

Yeah, I totally get the bond.

The bot thought and then got an opportunity to play bocce ball again.

I'm trying to figure out because I, I, I may have some skills.

I, I don't know, I just don't get to play it up.

What I'd like to do is go.

Cuz mostly when I'm playing, I'm, I'm testing different, you know, throws and things like that.

And so if I could just sit and throw a ball at the jack ball, which is the ball you're trying to aim for.

Right.

Get close.

You know, if I could just sit there for an hour and just, you know, try different things.

You know, sometimes I do it overhand, sometimes I do it underhand just to try different things.

And yeah.

Because I mean, there's, there's some folks that I play with that they're so consistent.

You know, just put that ball right up to the jack.

Well.

Right.

I'm sure they're like, what is wrong with Doug?

He like has a tick that every time it has to be different.

Right.

But you think of you telling the story makes me think of like the neighbor kids, the boys that were on like baseball, and they would go out and hit for hours and hours.

Right.

Just so you learn to chip it a certain way and do this.

Yeah.

If the modern world moves too fast, that we all want to get it done, figure it out and be done with figuring it out.

I'm speaking for myself, I guess.

So I encourage you spend that hour.

Yeah.

You know, and it is.

The plus is just the social part of it and getting to meet new people and hang out with the people that I've met and all that good stuff.

So.

Yeah.

And one of them was actually our guest today, Sha Counter.

I met her actually.

I've kind of.

I don't know if I'd mentioned this.

I kind of saw her maybe over the last couple of years at Abilities Expo and.

Okay, yeah.

And she.

I remember her.

And I definitely saw her this last year.

Definitely, for sure.

And I just remember she kind of just stood out for me.

You know, there was just.

There was just something about her presentation that was very, you know, sophisticated.

A bit.

Yes.

No, I would agree.

It's funny because you know how you have, like, sensory memories or you tie people to people.

Her.

So we do a video when we all talk, even though we don't use it.

So her hair color and the way she, like, has her hair reminds me of my grandma so much in such a warm way.

And then she naturally was a warm person.

It immediately was like, oh, my God, I'm sitting down to talk to somebody.

Somebody.

But I could see, even if you didn't have that tie her.

Her presence and her countenance like that, I could see her drawing you in to just be like, hi, I'm warm.

So it was nice to actually meet her at the Apache tournament that I went to a couple of months ago.

And it's like, I recognize you.

And I remember, yeah, I saw her cruising around the, you know, the Expo and back and forth.

So we've got her on today and she really has a line that.

That I know touched you.

You want to share.

Yeah, I love that so much.

You want to share it now or go away?

Yeah, yeah.

The whole, you know, she's saying, I'm not your inspiration porn because you.

You and I went off on that and continue to go off on it.

But she said, I'm not your inspiration porn.

I should be your aspiration porn.

And like, that was the best thing because I feel like we continuously talk about, like, being an entrepreneur because we're thrown into it and we have to.

And just the way you kind of rise above what's going on.

Yeah, there's a lot of people that should aspire to be us, not to be hottie, but, like the drive with which we work, the non.

No quit and all that.

And you.

You'll hear it in her story.

So.

Yes.

And those are the qualities that inspire me with this, you know, with this community that I.

That's why we do lovingly belong to.

Right?

Yes.

Yeah.

And so, and I understand, you know, you.

There's people that don't want to have people saying to them, you know, you're such an inspiration just because you happen to show up on your own at the, at the grocery store or something.

Yeah.

Yeah.

Okay.

That's not really an accomplishment.

You did it too.

And I'm not telling you that.

You're inspiring me so I can.

Funny, I was not missing from the community, but let's say missing from the community for so long, like throughout my life, because I just didn't.

I wanted you to see me as so much more than that.

And I don't even think it was conscious, but now it's like a 40 something.

I do kind of like I have looked back and kind of, you know, you sort of audit yourself and say, well, why was that?

And I guess I didn't feel like I wouldn't hear them say, you're such an inspiration because of my cp.

It was because of other things I was doing because I did other big things in life.

Right.

But when I really do think about it, people have said that all the time, like, yay, you went to school.

Okay, cool.

So are you.

You know, and I guess it just, just became maybe such a.

When somebody says something and you're so used to what they're going to say, you just don't even hear it.

Cuz you're like, okay, thank you.

Like automated response.

You've hear it your whole life.

Yep.

Yeah, yeah, yeah.

Was I going to say about that?

Darn it.

Inspiration.

Oh.

Oh, I, I know you were talking about, you know, being away from the community for a while and then coming back.

I.

Well, I just.

My whole life that was just me.

I, I wasn't a joiner.

I didn't join any, you know, chess club or whatever at school.

None of that.

So it really wasn't a joiner.

And then, you know, but getting involved in this community is just.

Yeah, I've just fallen in love with it, you know, it's just so great.

Well, and I mean I second that now and I thank you for that.

I mean I've said it so many times over doing the podcast, but like the people that, that I have become acquainted with in doing this, but even.

And I get stuck in like the.

You're such an inspiration.

Because they truly are.

But it has nothing to do with their container.

It's just their push through and their drive and like, I like driven people.

I want to surround myself with driven people.

Because I'm a driven person.

Yes.

And, and I feel like this is a community of driven people.

It was interesting sort of along these lines and I didn't think about this till now, but I was talking to one of the ladies.

I went a few weeks ago to that bunnies and besties thing where it was kind of a networking event.

I'm the only differently abled person.

I am also one of the only Caucasian people.

Like pick a thing.

But she said immediately when you went into the room, I saw you and I saw how light you were and the attitude which you were giving out and I wanted to give it back to you.

And I was like, I love that because the, that's the point.

Yeah.

And we got into a 10 minute conversation about you get what you give.

Yes.

But it was just super interesting and I feel like no matter who we sit with, I feel lighter.

Even if I'm tired and coming out of work.

I am so glad to have these conversations.

Yeah, that's, that's the thing, you know, there, there's that perseverance like you say, you know, overcoming the, the challenges and there's so many other qualities, you know, to them too.

And it's, you know, and hopefully, you know, they get some of that from me, you know, and I think, I think, you know, being somebody that's.

It's been a part of the community for 70 years when I go to events and there's, somebody that's, you know, two, three, four, five years in, you know, post injury, I hope just, just by my this year presence, I guess is what I'm saying is that it gives them hope for the future.

This isn't, you know, some kind of a harsh sentence, you know, in the long run it's just going to be an event in your life and there's so much more to come.

Good.

Yeah.

Good event.

Because we all go through ups and downs.

I mean, it can be a sentence, but it's your choice.

Like.

Yeah, it's the identity of who.

I don't know who I was saying this to, but I used to say, say this about my dad.

Love him, but he would, he knows this up there, wherever you are, that I used to talk about the identity of illness and how some of the.

What you see in me is because I didn't want to be him in the sense that it was always what hurt, what medicine needed to be at re up, what doctor he was saying whatever.

And it, he lost himself as a man in how it felt, how he felt victimized by his Ms. And like, what became of him?

And I was like, oh, hell no.

Like, no.

Not going down that path.

Not going down that path.

So I feel like you and I, even sitting in these seats, our job is to get.

You're allowed a pity party day, people.

And we've been, we've talked to people about this.

We purposely break up.

You are absolutely allowed to do that, but you are not allowed to say, stay in the sadness of what was.

Because what was, what was.

What's coming is a you.

Right.

Yeah.

If you genuinely want to make it better, nobody's coming to save you, you know, you've got to do it yourself.

But there's a support group and that's what we are, you know, we're there to cheer you on and exactly.

Love on you, you know, so it's not insurmountable.

It is what it is, but it is not insurmountable.

And that has been my TED Talk, ladies and gentlemen.

And we are going to meet another member of this wonderful community right after we take a quick break from Aghyar Professional Training.

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From the Agyar Professional Training Stage Studios, you're listening to Walk and Roll Live disability stories.

I learned young how to read a room before anybody spoke Saw the questions in their faces before they ever knew my soul they saw ramps and they saw scars Saw the way I moved.

Through space but they never saw the.

Long nights Building strength they can't replace and I've climbed mountains they'll never know.

Not with my legs but with my.

Hope I'm not the story people whisper when I pass by I'm not the struggle Frozen in somebody's eyes See me.

For the life I'm living Not the.

Chair that gets me there for the dreams I keep on giving for the fire I still carry everywhere I don't.

Need your sympathy I just need room.

To rise we are more than surviving.

We are futures in disguise don't call.

Us this Turt Smile just because we.

Made it through out here building something beautiful.

Same as you.

And we are back to walk and roll live.

I'm Doug.

Addie is here, and our guest is here.

Everything's working perfectly.

Our guest today, Shawna counter.

3 Degrees, 20 years of ballroom dance, a jazz nightclub where she sang live seven nights a week.

A SAG actress, a published author, a mobile app developer, and a Paralympic butcher hopeful.

And she's just getting started.

She's not inspiration porn.

She's aspiration poured.

Hello, Shauna.

Nice to have you here.

Hello.

Thank you for having me.

As we usually do, we go way back and start at the beginning and just kind of get an idea who the.

The mini Shauna was back in the day.

So where are you from?

I was raised in the Detroit area.

How long were you there?

You're gonna make me tell my age?

No, no, no.

Okay, so.

Okay.

So long enough?

Five years.

Long enough for this question.

So did you kind of witness.

Were you a witness of the Detroit kind of demise with the.

Oh, yes.

That was my whole.

My whole 80s childhood.

70S 80s childhood.

It was already not a great town.

Yeah.

All of Coleman Young, in case, you know, Micro.

No, Detroit.

No, I don't.

You know, Coleman Young was a mayor for a very long time, and all of his run, the city just steadily declined.

Now, could you differentiate between what he caused and what just the.

The change in.

In automotive needs were?

I mean, we were going through the gas crisis.

Cars were getting smaller, just all those different things.

More foreign cars were coming in.

I would say even during all of that, Detroit was still the Motor City capital.

Yeah, that was.

Yeah.

So that wasn't necessarily what was causing the decline in Detroit.

I'm actually writing a book about this.

Yeah.

Oh, yeah.

So one of the things that were.

That are causing the decline of any city is urban sprawl.

Right.

People being piled on top of each other inside of a city, and they decide they.

They want to have a house of their own and a yard and raise their kids so they would move out to what was then the boonies and the sticks.

Nature.

Yeah.

Out in the middle of nowhere with a piece of land that a farmer decided to sell to a developer and make a neighborhood and they could get their little slice of heaven.

Everybody coming back from World War II with the GI Bill and getting a loan for a house, all of that.

It's weird for us nowadays, all of that was very new.

There were no such thing as mortgages back in the day.

Right, Right.

So that was something that the government Said, hey, you served your country.

Let's help you get a slice of the American dream.

And so that's why people started to move out to the middle of nowhere because it was cheap and they could afford it, and then the rest of society followed them.

Once that happened, then malls had to go.

The very first mall ever was in Detroit.

Was in Detroit.

Yeah.

Yeah.

So that's why I'm writing this book about this, because I didn't know that.

I didn't know malls came up in my own backyard.

So you know all about how urban sprawl happened, why people moved out there, and even the manufacturers.

Ford was out there, which my people are Ford people.

Ford was out there because it was land he could get and build factories on.

Yes.

And cities.

Didn't he build, like, little cities for his workers that worked in these factories that he sent out there?

So there we're doing a whole.

We are doing a thing that has nothing to do with disability, but it's still fascinating.

It is, and that's the reason I asked.

I saw documentary years ago, and then it's the.

Then the decline of it, where all of that started returning back to nature because people lost their houses, and then they just kind of wiped out entire.

They didn't have the.

The resources to.

To provide services to just a few houses way out in the middle of nowhere.

So.

Yeah.

Okay.

So it's kind of the other way around.

Everybody left Detroit.

Detroit was one of the largest, most populous cities.

Yeah.

But then as people moved out to the boondocks, all of that giant footprint of Detroit became abandoned because every second house was empty.

Then two out of three houses were empty, and then the city couldn't afford to do snow removal trash.

That's what I'm saying.

That's what I'm saying.

Because all of that tax base left, and then they.

Yeah, they couldn't afford it.

Yeah.

So anyway, I was about to pull you back into the disability story.

I was like, okay, so you're born in Detroit?

I was actually born here.

Okay.

And my father was in.

Was stationed at Edwards, so I was born at Lancaster.

So you're a military baby.

Yeah, not really, because I was just born there, and then my mother and I went back to Michigan, and I actually didn't meet my father until I was 21.

Oh, wow.

Okay.

So what were your interests back in those days as you were growing up in Detroit?

My interest?

Your interest in sports or.

Oh, yeah, whatever.

What interested you?

No, I wouldn't have said sports.

Actually, sports is a funny story because I would never have played a sport.

I mean, I tried.

I was terrible at it.

It's made fun of me.

Ha ha.

You've got Shawna on your team, which made me not want to play.

Right.

So I did not sport what actually, as a child, where I learned my.

My lane to kick people's asses proverbially was playing chess against all the boys.

Oh, so smart.

Yes.

And that hump on rain days when we had to have recess inside for fourth grade or fifth grade or whatever, and I was beating their butt.

Nobody's making fun of Shawna anymore.

Right now I'm like,.

Yeah, you see, you were saying.

Yeah, that's right.

So I think we started off a little bit different because normally we have the person tell what their disability is, and, like, so we kind of know where we're taking the story from.

So I'm going to remind you even further because it hasn't been revealed, so it's hard to tell the story without you sharing.

Well, see, I know that's where I was going, because I know it's revealed early, so I know it's coming here pretty quick.

Yeah.

Yeah.

So you want to reveal that now?

Sure.

The big reveal.

Yeah.

I have something called spinal muscular atrophy, type 3.

It is one of the mildest forms of this disorder.

It is recessive, meaning both of my parents were carriers but not affected.

And then I have a very small percentage of a chance that both of their recessive genes line up and then create an affected child.

Me.

So, of course, since it was recessive and nobody had it when I came along, no one was looking for anything.

And my grandma raised me.

Different story.

But she had raised other kids.

So when she had me, she saw that I was not meeting milestones the way most children do.

I would.

It's called a Gower's maneuver, where a child sticks its butt up in the air and then puts its hands on its leg.

Hands on its legs to walk.

Walk themselves up into a standing position.

Yeah.

I was still doing that at three and four years old.

And my grandma's like, she should have leg strength to squat by now.

Yeah.

She should have the balance.

She should have the capability to not be sticking her butt up in the air to get onto her feet.

Plus, I fell down a lot.

So she was certain I had an inner ear problem.

She took me to an ent.

He did all the tests, like, touch your nose, balance.

I was fine.

But I do have a tremor, so he noticed that and said, maybe it's neurological.

Maybe you should take her to a neurologist.

We went to a neurologist.

He did the hammer, the reflex hammer, which as it turns out, I did not know this, but apparently my reflex is not like everybody else's.

So that was one of the big light bulb moments for the neurologist.

Like, that's not normal.

She does have a tremor.

It's definitely something neurological.

But they had to do a biopsy, take a piece of muscle, look at it under a microscope for about six months, and then came back with a diagnosis.

In the olden days, it was called Kugelberg, Wielander, the two German guys who discovered this type three version of my disorder.

And I was told at six, which is I had the biopsy at five, five and a half.

And then I got the results when I was 6, that I would be in a wheelchair by the time I was 12.

They handed me a pamphlet with a pencil drawn kid on it who had like an arm pulled up and like standing a little crooked.

And I'm like, well, that kid doesn't look anything like me.

Yeah, you're like, that's me.

And that one day we both will end up in a wheelchair.

Okay, well, sounds like that's somewhere down the road and I'll worry about that later.

Yeah, yeah.

And how I took it when I was six.

Like, yeah, if you tell me at 12, I'm gonna be in a wheelchair.

Well, if I'm six, I'm like, that's another whole lifetime away.

I was gonna say you take it like a six year old who's like, well, cool.

I just want a popsicle after this.

So who cares?

Let's go out and play.

Yeah, I mean, I play weird.

I mean, I don't run like other kids.

I. I could.

All the things my doctor said I wouldn't be able to do.

Oh, you're never going to be able to jump rope.

I'm like, but I do.

So how do you jump rope?

I go, well, I swing the rope and then I step over it before it comes.

It seems like everybody that we talk to has that same story where the doctor was wrong.

Yeah, well, that's why they call it a medical practice.

Practice.

Yep.

Yeah, exactly.

Yeah, but he said the same thing.

You'll never roller skate.

And I go, but I do.

Yeah.

How do you roller skate?

I'm like, well, I push off with one foot and then I push off with you.

I mean, kind of like you like,.

How do you roller skate?

How do you roller skate?

I mean, I think I'm doing it right.

I'm getting from point A to point.

B. Yeah, yeah, yeah.

But he actually had me bring my roller skates into the hospital back.

You'll remember back in the day, hospitals had the colored stripe that would take you to whatever department.

Yeah.

So I was skating in a circle around this center stack of office buildings, and I'd be going by like, hey.

And he's standing there watching me skate, like, she's doing it.

Another doctor would come up and be like, hey, is that your SMA patient?

He's like, yeah.

Then I go by.

I was like, you want me to go backwards?

Yeah.

So I just remember skating through the hallway at the air.

At the hospital, because they'd never seen that before.

Yeah.

But that's amazing.

That shows you.

Like, sometimes you don't.

You aren't contained by your container.

People's expectations contain your container.

Yeah.

Well, it's also.

I was guinea pigged a lot as a child.

Poked and prodded and tested and cut up and you name it.

Because I was not fitting their mold.

That's what I was going to ask.

How this impacted how they treated their other patients.

Well, it's actually impacted how they define the disorder now.

They define it as a broad spectrum disorder.

Okay.

You didn't get a name in there.

You should have had your name in there.

I don't think I get that kind of credit.

Okay.

But they.

Now, had they known that, then they wouldn't have said, oh, you will be in a wheelchair by the time you're 12.

Yeah.

Now they say things like, it is progressive.

We're not sure what rate it's going to go.

It's a broad spectrum.

They.

There are still a few doctors, h. Bless their heart.

A few doctors who.

They don't know what they don't know.

And they're super old and they think spinal muscular atrophy and muscular dystrophy are the same when they're not.

Yeah.

And they give very bad advice, like, oh, don't let your child go out and play.

Don't let them get hurt.

Because if they get hurt, their muscles tear and they never rebuild.

And I'm like, yeah, that's not.

That's muscular dystrophy.

Like, that is not correct.

Wrong diagnosis.

And there's.

I go to events now, and I hear a doctor on a panel tell this family who stands up, it's like, well, our doctor said we shouldn't let her go out and play.

We're not.

She wants to Get a bike.

What should we do?

And I'm like, oh, I will go talk to them afterwards.

Get your kid a bike.

Get him some knee pads.

I want to scream, get a bike.

Yeah, exactly.

Get knee pads and elbow pads and helmets.

We didn't have that back in the day.

So my knees and elbows are pretty scarred up.

Right, but let them.

Let her decide what she can and can't do.

Yeah, yeah.

I mean, that's the way I grew up.

You know, we rode skateboards and obviously I wasn't riding a skateboard like everybody else.

And, you know, they gave us a go kart, a gas powered machine, you know, that would go fast and I couldn't push the pedals.

We rigged up a little wire where I could pull it and make it go fast.

You know, my.

My parents weren't even aware of what we were doing.

I don't think you're like, do you.

Have a wire coat hanger?

And they're like, why?

Why?

Yeah, what are you doing?

I'm about to fix something so I can do it.

Yeah, exactly.

Well, it sounds like your grandmother, though, was like, really smart and like really progressive and trying to get you help or like, figure it out.

So what did she do when they diagnosed you?

My grandma's a little old school where she's just like, oh, well, you're gonna figure it out.

She did not pamper by any stretch of the imagination.

I remember when I was young, first she was just cranky and ornery, so I thought she was just being mean because that's just how she is nowadays.

I have a different opinion.

But when I was like 8 or 9 years old, I was in the car.

Back in the day, people car doors used to weigh 7,000 pounds.

Yep.

They were all metal with these really hard lever handles.

You had to pull to get.

And so I wanted.

It was winter, heavy snow, tall.

And we pulled into the driveway and I was like, oh, I need you to let me out.

She's like, you get out.

Like, I can't open the door.

She's like, oh, well, you'll figure it out.

And she shut the door and went in the house.

Yeah, Sat in the car.

Like, I can't believe she just left me here.

So I finally, like rolled onto my back, put my feet on the door so that I could pull with my hand handle.

I pull my hands on the handle and then push with my legs simultaneously.

Because you got to pull while you push.

I know, so confusing.

So I finally did.

I pulled with my hands, pulled with, pushed with my Feet.

And I got out and stood, stomped in the door.

She's like, see, you made it.

I was like, no thanks to you.

And I stormed off to my room.

But in a way, she kept telling me, I'm not going to be here your whole life.

You're gonna have to figure out how to do things.

Yeah, yeah.

Like, fine.

Now I look at it and go, yeah.

It forced me to be resourceful.

That was like the little pebble that dropped in the.

In the pond.

And as you learn so many other lessons from that one little lesson, I.

Give her credit where it's due.

She did the right thing.

And not pampering me, she could have been nicer.

It's that generation, though.

Yeah.

The Midwest grandma generation.

My grandma lived in, grew up in Illinois, so similar, like, Mimo line of, you know, very the sweetest, but also, like, standards.

And you're gonna do this, and it's gonna make you a better human.

And I think about it every day.

Midwest people are very like, work hard.

Don't make excuses.

You'll figure it out.

No one's here to rescue you.

You gotta roll up your sleeves.

And so how was the school experience?

Did this impact that at all?

Yeah.

So it's weird, I think, because the apple doesn't fall far from the tree.

It was a very female dominant house with a lot of very large alpha personalities.

So even when my grandma had problems with her own kids, who were actual problems, but they would get suspended or something, she would, you know, stomp into the school and rip them a new.

And then be like, you're gonna this.

And then she'd do the same thing with the kids at home, but she made sure they weren't.

Not going to school as punishment or something.

You put them in a room if you're.

Whatever.

But he's not staying home and he's not learning that breaking the rules is how he gets out of going to school.

Yeah.

She would be lecturing the school about what to do.

So when I came along, they kind of already knew.

She was like a.

A wanted poster on the wall.

Don't mess with this thing.

He was like, look out for this grandma.

She's.

She'll be here every Wednesday.

Yeah, that's right.

You don't want to piss that one off.

Yeah.

So when I came to live with her, after my biopsy and all this stuff, it was decided I would live with her because she had insurance.

She was mostly retired from Ford, had good health insurance, and I.

We didn't know.

We thought I was going to be in a wheelchair by the time I was 12.

Right.

So it was like, send her to live with her grandma.

She can handle the medical responsibility of this.

So when I went to school, it was.

She's got a disability.

This is what it is.

She looks fine.

For now.

It's gonna get worse.

My school district, this is the 70s, gave me, like, a physical therapist, an occupational therapist.

I got out of class every Wednesday to go to a different school that had a pool to do hydrotherapy.

They left me.

They busked me to another school and brought me back with wet hair just in time for school to get released so that I could go home.

And the kids were all jealous, and I was perfectly fine with that.

Yeah, yeah, yeah, yeah, yeah.

You're like.

And a cherry on top.

That's right.

You want to make fun of me for kickball.

Well, there you go.

I'm gonna go swim, and your ass is gonna sit in school.

That's right.

So they.

My school did.

They adapted gym as much as they could.

Like, all the kids had to run the perimeter of the gym, and I did the circle in the middle.

Yeah.

So they did as much as they could to mainstream me.

What we call mainstream now.

No.

Yeah, to mainstream me.

Just keep me in regular school.

Because, again, you didn't know anything was wrong until I tried to get up off the ground.

Right.

Had to climb stairs or do something where they're like, no, that's different.

Yeah.

Right.

And then I got the junior high, and they attempted to put me in adaptive pe, but it was PE with all the kids in wheelchairs, which was grossly in.

Unfair.

Yeah.

Because I to them so much more than they could do.

Yeah.

Yeah.

Which meant I ended up being more like the assistant.

I would put the ball on the T ball for them.

I would push them to first base.

I would.

Yeah.

Because I.

There was no gym for me.

There was no thing that fit my.

In between disorder.

Right.

And then by high school, they were just like, you know, we're going to exempt you from gym class.

Yeah.

Like, what's the point of trying to think things up?

We'll just tell you.

You're good.

Everybody again, but, you know, a similar experience.

And I went to regular PE and.

And we just figured out ways to include me.

You know, everybody.

Nobody questioned it.

You know, and.

But nowadays, I don't know.

They got.

They've got the intellectuals involved and the educated people, and I think they kind of messed it up a little bit.

I don't know.

That's just.

That's Just me.

But I think mainstreaming, just the whole concept is so insulting.

Yeah.

Just if it's not an intellectual disability, then it's not a disability school needs to be worried about.

Yeah, right, exactly.

Put them in any class.

Let them go to every.

If they look at the class and go, well, obviously I can't do dodgeball.

Right.

Yeah.

Then we'll give you something else to do for this hour.

What do you do?

Do you draw?

Do you.

This?

We'll set you in a room and let you do some art stuff.

Extra art.

Less gym class.

Be in gym class, but modify it.

Whatever.

We'll figure it out.

Yeah.

It's not rocket science.

And usually the kids figure it out on their own.

You know, I went to.

I didn't get mainstreamed until fifth grade.

And when I got to school, you know, the kids were playing handball and, you know, with a big ball, you know, Is that what they called it?

Not dodgeball.

This was you.

You had two people playing each other and they're hitting against.

Right.

Hit it on the wall.

But the size of a dodgeball.

Yes, yes, yes, yes.

And, you know, and I hit it with my crutch because that's what the way I could do it.

You know, nobody questioned it.

Nobody.

You know, we were included.

And.

Yeah.

So.

But, yeah, what we did for me, I think, was, like, have pinch hitters.

I had good hand, eye coordination.

I could hit a ball.

I just couldn't run to base before getting tagged out.

Yeah.

So someone else is like, I'll run for her.

Yeah.

Which is a component of baseball anyway.

You know, pitch, inning or running.

Yeah.

Pinch runner.

Runner.

Yeah, yeah.

Right.

So as I'm saying, we figured it out when I was a kid.

It wasn't a big deal.

I mean, there were many tears shed because little me did not understand why kids were mean.

Yeah, Right.

But that's why it's also difficult for me now to understand bullying.

I'm like, yeah, Berkshire, bullying's been around forever, you guys.

What are you not new whining about?

Yeah, yeah, it is.

Like, there's only a few of those and generally everybody else pretty good.

At least my experience, I don't know.

You know, I'm not out there now, but, you know, I had friends that didn't treat me any different, and I had some others that were jerks, but, you know.

Yeah, that's what I'm saying.

As a kid.

Kids are mean, but that's what they don't know better.

Yeah, yeah, yeah.

It's part of their whole dynamic.

So how did you socialize?

So as you're, you know, aging now and you're.

How did you feel coming up on that age when you were supposed to be in a wheelchair?

Did that.

Oh, at 12?

Well, so funny, because every six months, every however long, I would go see my neurologist because there's no treatment.

So it was just a checking in on her.

So every time I'd see me, he's like, well, I'm thinking based on this, maybe not till 14, maybe 15, maybe in your late teens.

Like 18, 19, for sure.

Yeah, yeah, yeah.

I can't imagine you're gonna still be walking at 25.

By your 30s, it's bound to have, like.

He just.

I was like, you know, this whole moving target thing.

But do you feel.

Did it make you feel more?

Because you do know.

Well, you think whether they're wrong about what the time on the clock is or not, that there's kind of a clock.

So do you feel like you grasp life a little bit, you know, harder?

Because you were like, I gotta do it now.

Yeah, yeah.

A hundred percent.

That's one of the talking points I think I sent over was.

I think it changed my personality to be yolo.

Before there was yolo.

Yeah, yeah, it was.

I can do this now.

Don't know how long that's gonna happen, so I'm gonna go do this thing.

And someone's like, oh, you wanna.

You want to try water skiing?

I was like, sure, yeah.

I like water.

I'm a good swimmer.

Yeah.

Cannot water ski.

I have had.

I've learned the hard way.

Don't wrap your ski rope around your arm.

Yes.

Don't do that.

Yes.

I could tell you that when the.

Boat takes off, it just rips all your skin off.

And you're like, oh, there's a guy.

Named Lefty that would have told you that.

Yeah.

So there were things I tried to do where I was like, I don't know why I can't do this, but I'm guessing this is the wall.

So.

So you think part of this came from Grandma and the way she was, or you developed this.

You don't feel like it was a part of your personality.

You know, we all seem to have a personality when we show up.

This kind of just comes with us in our DNA or something, but sounds like you kind of developed it, nurtured it.

It's hard to say.

I've been talking to a lot of disabled people.

Yeah.

And.

And trying to figure out, like, is it a.

A funnel?

You either go down the funnel of helplessness, or you go down the funnel of resourcefulness.

I don't know what made me the somewhat unique creature that I am.

Very few people have done the kind of things that I have done, even with a fully capable body.

Right.

Yeah.

So it's like.

I want to say it was my personality, and I was always going to be like, did you say no?

Okay, hold my beer.

Yeah, yeah, yeah, yeah.

I don't know if that was it or if it was.

It was a lesson I learned from my doctors, being wrong over and over.

And they're the smart ones in the room, and everyone listens to me, to them.

And I'm like, well, you know, sometimes I think too, and I think Addie will agree with this, is that, you know, when.

When you have a condition like this, you flex that muscle a lot, so you just get better at it, whether you want to or not.

I don't.

You know, maybe some people still, you know, allow others to help them more.

But, you know, I know.

I mean, even to this day, you know, I was just out running errands.

You know, people want to open a door for me.

You know, I mean, and if you're going through the door, you know, it's like, okay, fine, but.

But I'm talking about going to the doctor's office, and the.

The gal behind the counter wants to come out.

Come through the door.

Come on.

Well, I'm out the door by the time you can stand up.

So I don't.

But I appreciate, you know, their kindness, but, you know, it's like, no, I don't want people to help me.

You know, I'll.

I'll.

I'll.

I'll go for it when I just know I can't, which is more and more as I get older.

But, yeah, when I was younger.

No, I didn't want any help.

I think this is veering more toward something I did not know until I had a chair, which did not happen until I was 47, by the way.

Very much past 12.

Yes.

And even then, it was a decision I made where I was like, you know, walking is getting harder.

I don't do it.

I don't leave the house as much.

Yeah, yeah.

I've noticed that I'm inadvertently becoming a hermit, not because I don't want to go in public, but because it's a lot of freaking work.

Yeah.

Yeah.

And I'm afraid I'm gonna fall.

And if I get to a restaurant and they don't and their chairs are too low, I can't get up and down.

So then I can't stay there and eat.

I'll just eat in my car.

If I'm just gonna eat in my car, why don't I just eat at home?

Yeah.

And so it was when I finally got the chair, I was like, oh, finally I can go out in public.

You're like, why did I do this to myself?

It's.

It's one of those things where you kind of like, you're either willing because I'm kind of going through that.

I'm 47 now, and so, like, I have cerebral palsy.

But your joints age and things happen over time.

And now it's, you know, my balance is sort of giving up a ghost a bit.

And I'm like, okay, I do want to be like, I'm social and I'm publicly.

And I'm like, I don't.

I'm like, you.

I'm like, what if I fall?

What if I can't get up?

What if I trip into something?

Like, I would think, oh, my God, I'm gonna trip into a shelf with a grocery store and I can't afford this.

Like, you know what I mean?

Like, all that.

And then finally it was just like, just use your chair.

Like, really, the.

It's in your head.

My head.

Not so much in everybody else's head.

The fact that it's making me so anxious is my own deal.

Right.

Well, for my story, the.

An anxiety.

Anxiousness.

Yes.

Was given to me by again, doctors who said, walk as long as you can walk, because once you're in a chair, that's it.

Yeah.

So at 47, I was like, I don't think I'm ready to hang up my walk in legs yet.

Right.

Yeah.

I've been told that once I get into a chair, that's it.

And even though doctors say that I think ourselves, we say, you know, I want to.

I want to do it as long as I can.

And there are, you know, depending on whatever condition or you have, sometimes that's good advice.

Use it as long as you can.

But, yeah, in certain times, it's not, you know, but I always felt what kind of got me finally to go to the chair full time was.

Was that I felt more agile in the chair.

I had lost my agility that I felt, you know, for me with the crutches and brace and.

And so when I got in the chair, I felt I could move for faster and.

And do more things that.

You're right.

You know, all those things you said.

Yeah, all those things you just, you know, you, you don't go out as much.

Like, I'd go one, one errand and I'd have to kind of get myself psyched up to go run one errand because I know I'm gonna have to go, I'm gonna have to get the car out of the back.

That's tenuous.

If I fell in the middle of a parking lot, I'm gonna have to have somebody pick me up.

I can't get up anymore.

Blah, blah, blah, blah, blah.

Yeah, that happen.

Now I'll go on three, you know, I'll go on three errands or I'll do even something that I hadn't even thought about doing.

You know, I'll be out.

Oh, I'm gonna stop over at Home Depot and get a coup a few plants.

You know, I could do something spontaneous even now with it, with the accessible van that I have now.

So.

Yeah, it changes your life, those tools.

Well, the only problem is me thinking that once I got my chair, the world is my oyster again.

Yeah.

Until I encountered that 90 something percent of places are not ADA compliant.

Yeah.

And that's when I was like, oh, good God, hasn't this been a law for decades?

So is this another thing that you jumped into the deep end?

Yeah, well, I didn't mean to.

It's just my idea that the, the pot of gold at the end of the rainbow was just a whole handful of barriers.

Different barriers than.

I'm gonna get fatigued and fall now.

It's.

I can't get into the bathroom stall because it's too narrow and I have to either pee in a cup or pee with the door open or go in my car and use a travel urinal.

Oh, I have to be.

Find a wire hanger.

I have to, I have to jury rig it some other way to be able to access society because there's still uncountable number of barriers.

And I'm like, well, I, okay, this is my life now.

I never thought I would be a full time disability advocate because I didn't think I needed to.

But no.

So tell us more about that.

How does that, you know, manifest in your day being an advocate?

Yeah, well, the first, the very first part was, you know, ADA compliance for businesses.

But once I started to recognize that I'm my, I'm not taking this garbage from you.

Personality is an asset to my community.

Then I decided, well, I can pick up the sword for anybody.

And weirdly Was a weird psychology thing.

I am.

It's easier for me to fight for other people than to fight for myself.

100%.

Yeah.

Yes.

I mean, I think that is the human condition.

Right.

Because it's much more easy to be like, oh, don't worry about me, but I'll help you, and I'll be on fire for you.

But, you know, it should.

You sweep me into the circle of.

Of, you know, why it's important.

I'm like, oh, no, no, don't look over here.

Just listen.

Yeah, well, for me, it's more when.

When it's me, then I'm angry.

I'm the victim.

I'm defensive, I'm hurt, I'm offended.

All of my emotions are in there, which short circuit me and make me go ballistic in five seconds.

Yeah.

When I'm doing it on behalf of people, then I could.

I can win them over a little bit more.

More bees with honey, or whatever that saying is.

Yeah.

Flies with honey.

More flies with honey.

Yeah.

I get more productivity and I can be a little bit more just.

Just a sarcastic but.

Right.

But without this stinging scorpion tail at the end.

Right.

You're able to like, box it, compartmentalize it, because it's one step away from you.

Right.

So you can.

Let's be logical about this, because the emotions have been removed mostly.

Well, yeah.

Not like the psychotic, oh, my God, I'm gonna eat your right version.

That's the part that feels like, when you come for me, I'm coming for you.

Yeah.

Yeah.

Don't let this.

Guess what this chair weighs almost 400 pounds.

Do you want me to hit you with it?

Yeah, yeah, yeah, yeah.

Don't start what you can't finish.

That's right.

One of us is going to come out of this on the losing end, and I don't think it's going to be me.

I already have a chair, so if I give you one, I'm just making you join the community.

But so you've actually been in, like, a real situation in which you dealt with a business and you had to stick up for yourself and sort of advocate continuously to make something happen.

Yeah, well, you know, that course started when we were children.

I was advocating for my care.

Advocating at school.

Advocating.

Maybe that was a template that was given to me by my grandma, who's just like, no, you're gonna this.

And I'm like, okay, you're right.

I am gonna.

I'm not gonna let them tell me, also part personality, because I think we are all from the same tree.

Of alpha women.

So I've been advocating since I was a child.

Yeah.

And now I'm just advocating for my community.

So another area that I am very passionate about is, again, I didn't know this till I got a chair.

Okay.

Because we'll say, up until I got till 47, it was more or less a hidden disability.

Okay.

See, it.

Until, like I said, until stairs or getting up out of a seat or something that required me.

Mechanics.

Body mechanics with muscle use.

Yes.

Then people, even when I would climb stairs, they're like, oh, did you hurt your foot?

I was like, no.

Why?

Oh.

Oh, no.

I have a disability.

Yeah.

I forget that I have it because it's not a part of my life.

It is now because I've chosen to be an advocate.

But up until 47, 48, it was something in the background.

But once the chair came along, I was astonished how weird people are about my chair.

Yes.

I was like, I will see them coming on a sidewalk, and I see the panic in their face, and then they, like, jump onto the grass.

And I was like, the hell was that for?

Yeah.

But across the street and go to the other side of the sidewalk.

I'm like, do they think it's contagious?

What is that?

I have to tell you, in my 47 years of walking down the sidewalk, no one ever went to the other side.

Yeah.

Yeah.

Oh.

But now the chair freaks him out.

Oh, that's really weird.

I'll go into a place and be talking to somebody, and they'll be talking to me a certain way, and then they'll come around and see my chair behind me, and then they'll be like, oh, oh.

And then they complete.

Then they start talking to me like, I don't understand.

What are you doing?

We were having a conversation.

We were fine.

Yeah.

Yeah.

I'll go places with a friend of mine, and he'll.

This one bar was so funny.

This guy kept telling my friend, oh, my God, it's so great what you're doing.

You're so noble.

You're such a good man.

And we're like, the hell is he talking about, you know, being with her, doing.

I was like, oh, right in front of you.

Jesus, you're giving him a gold star for putting up with the cripple girl.

Oh, my God.

I can't believe it.

This is really what people are dealing with in the world.

I would have never known had I not had the chair.

Because prior to the chair, people talk to me like normal.

Yeah.

So then I thought, this is clearly I don't think people are.

I mean, people are, but I don't think they mean to be.

Yeah, Yeah.

I think this is a lack of understanding, a lack of education.

Those people and the thems and the ick and the.

Oh, what if that were to happen to me?

Me and all that baggage they have been given.

And then I watch parents.

Kids come up and like, what's this?

Like, johnny, Johnny, don't.

Don't bother her.

Don't.

And I was like, let the mask.

Yeah, we.

We've.

I've told that story many times.

The Disneyland story of a little boy, probably like, three, climbing up on my lap because he was tired of waiting in line.

And the parents were like, oh, my God.

I'm like, it's fine.

And I was like, see, I have a big kid stroller.

And, like, started talking about that.

You know, I didn't care.

They cared.

My.

My favorite was when I was, like, 12, 13, something like that.

So, of course, by then I had heard my whole life, mommy, mommy, what's wrong with that boy?

And at 12 or 13, the first time a kid said, mommy, mommy, what's wrong with that man?

You know?

So at 12 or 13, I'm like, you hear that?

I'm a man.

Got it.

I have been the kind of man.

I've arrived.

Yeah.

Well, it was all that stuff.

I.

It got thrust onto me in my late 40s, so I was shocked that this is.

This is the society we're living in.

Not only are there no grab bars and narrow bathrooms, and I understand businesses can be jerks because it's the bottom dollar, but why are people jerks?

Yeah.

Oh, I think they just don't know what they don't know.

Yeah.

And so I started thinking, how can we need to.

Because after they talk to me for 20 minutes, they're all like, oh, she's totally normal.

She's chill.

Yeah, yeah, get that.

Imagine that a human being who just happens to sit down for a period of time throughout their day.

Yeah.

Is just a normal person.

Wow.

Who'd have thought?

So I started to get into representation in Hollywood.

Okay.

Because I feel like if people saw this in their everyday life, they wouldn't think I'm such an amazing feat.

Oh, my God.

You drove here by yourself?

Yes, I did.

You can have your gold star back.

I'm good, thanks.

Yeah, you go put that on your refrigerator because you learned something new today.

Did you.

And I'll do also go.

Did you drive here today, too?

And then they're like, why would you like that.

And I'm like, yeah, see, See what I mean?

See how stupid it sounds when it's said to you?

It sounds to me, but I just give it back to them humorously and I'm just like.

I mean, did you drive here in your very own car like a big girl or like a big boy?

So, okay, you started working on representation.

Yeah.

So you got into acting or how did you do that?

I was an actress before I had a chair.

Okay.

It was in the late 90s, but I was again, it was a hidden disability, so people didn't know.

There was one scene, one night when I was working.

There was a TV show way back in the day for a minute called the Visitor.

Okay.

With the super tall guy from the hills, Laura Mars.

Oh, shoot.

From some show.

A super.

Gotcha.

Got you.

Twin Peaks.

Cole Colbert.

Col.

I can't remember his name because I'm old and my brain is.

That's okay, we'll Google it.

Google, Google.

The Visitor.

Yeah, John Colbert, whatever.

Oh, I think I know you're talking about.

Yeah, yeah.

He was the alien in the Visitor, but he looked like a human.

And there were two kids that were helping him adapt to Earth or whatever.

I was a background extra on that show.

And they came peeking in the.

The tent where we were eating on location and.

And they kept pointing to me and I'm looking around like I'm the only person in this area.

What, what did I do?

Why am I in trouble?

Yeah, I'm in the background.

Yeah.

No, but we're like eating and I'm like, I just, was just eating my food.

I'm.

I didn't say anything to anyone.

I didn't.

So they came over and they were.

Like, how tall are you?

How much do you weigh?

Kind of personal.

Yeah.

Does it matter?

They're like, can you come with us for a minute?

And their actress, the teenage girl, she wasn't really teenage, she was just playing teenage.

Was.

Was getting claustrophobic inside of a costume.

So they were looking for a body double.

Got you to be her in the costume.

So I was like, oh yeah, I'm not claustrophobic.

That was it.

She.

Haha.

They were dressed up as aliens, so it was one of those weird.

Yeah.

Masks on top of a flesh colored bodysuit or whatever.

So I got dressed up in the whole thing, put the mask on and then they were like, action.

And they're like, now run up the stairs.

And I was like, oh sure.

You're like, well, you could have told me that part.

That part well.

And they didn't have any reason to think I couldn't.

Right.

And I don't walk around telling them, oh, you guys have a disability.

Hi, I have a disability.

Because then it opens the door.