Transcript

Erin Hawley:

Hey, listeners. Welcome to another episode of Everything You Know About Disability Is Wrong. Today on the podcast, we have Amanda McGrawy.

Lily Newton:

Amanda is a 4 time Paralympian in 2008 Beijing, 2012 London, 2016 Rio, and 2020 Tokyo, and a 7 time Paralympic medalist, as well as a past winner of the Chicago, New York, London, and Tokyo marathons. McGrory attended the University of Illinois at Urbana Champaign from 2004 to 2010 on an athletic scholarship before pursuing a full time career as a professional wheelchair marathoner.

Erin Hawley:

And she received her NSLIS in 2018 from UIUC and was hired by the to start over again. My voice is torn out. Let me get a drink. I will go back.

Lily Newton:

Take your time. Thanks. I love getting to say Urbana Champagne on a podcast. That's where I'm from.

Amanda Mcgrory:

Oh, I didn't know that you grew up there. I just used on the last call, you said you went to school there.

Lily Newton:

I did go to school there, but I also grew up there. It's my hometown. But actually and I'll say this later in the interview but it was through like researching you and getting ready for this episode. I had no idea of U of I's, like, incredible history in adaptive athletics.

Amanda Mcgrory:

Oh, really?

Lily Newton:

That's awesome.

Amanda Mcgrory:

I didn't know. Pretty impressive.

Lily Newton:

Cool. Well, don't say too much because I'm gonna bring it up when Erin's back.

Amanda Mcgrory:

I get really excited about it, though.

Lily Newton:

Good. I'm glad. It's cool. It's very cool. I think we'll talk about that when we get to, like, the education section for sure.

Erin Hawley:

I think I'm on chain now. Okay. I'm not dying. Okay. She received her MSLIS in 2018 from UIUC and was hired by the United States Olympic and Paralympic Committee as the Archivist and Collections Curator in July of 2020. Welcome to the podcast, Amanda.

Amanda Mcgrory:

Thank you. I'm so excited to be here today.

Lily Newton:

We're so excited to have you. Before we dive into questions, which we have a lot of, let's do our audio descriptions. This is just where we describe what we look like on camera for our blind or low vision audience. So, Erin, you wanna start?

Erin Hawley:

Sure. This is Erin. I have red hair. I'm a white woman. I'm wearing a pink shirt, and I'm in my bedroom.

Lily Newton:

This is Lily speaking. I am a mixed race white presenting woman with green eyes and brown hair. I'm wearing my usual all black turtleneck outfit, but I have a new necklace. Long time listeners will know that I broke my other necklace that I fidgeted with a lot during the episodes. My sister got me a new 1. It's a face with little flowers in it. Shout out to my sister. And I am sitting in my office, and there's a bunch of great books on disability justice in general behind me.

Lily Newton:

Amanda, you wanna give your audio description?

Amanda Mcgrory:

Yeah. This is Amanda. I am a white woman with medium length brown hair and gray eyes. I'm wearing a gray shirt, and I am inside my office at the United States Olympic and Paralympic Committee.

Lily Newton:

And Amanda has on a phenomenal lipstick color, by the way. It's so good.

Amanda Mcgrory:

But with the bright red lip today

Lily Newton:

I love a bright red lip.

Amanda Mcgrory:

From we were talking before we started recording that I've been having terrible allergies, and I have a allergy rash on my neck. I'm trying to distract from that with the bright red lips. Oh, it's working.

Lily Newton:

I love when someone can rock a bright red lip. Alright. We're ready to dive in? This is an exciting interview for us, Amanda, because, like, athletics are very out of our realm, and so, like it's just a whole new world. We have a lot of questions for you and feel free to like correct us on any language we use because this is new. Let's dive in, Erin. You ready to ask our name, shape question?

Erin Hawley:

Yes. I am. So our show is called Everything You Know About Disability is Wrong. So we'd like to ask every guest, what do people get wrong about you and your disability?

Amanda Mcgrory:

Oh, we're going right in with the hard ones.

Erin Hawley:

Yeah.

Amanda Mcgrory:

So I think this is something we talk a lot about in my work here at the at the Olympic Committee, Olympic and Paralympic Committee. And it's more talking about athletes with disabilities and what it means to be a person with a disability and also to be an athlete with a disability. And I think it's this kind of tricky area because a lot of times, as an athlete, as a Paralympian, I don't feel like I'm always included in the conversations about disability overall. And when we are, the stories tend to focus a lot on overcoming an inspiration and all the incredible things that we are able to achieve as athletes, which is a lazy way to write a story, first of all. But also, I think that it somewhat alienates us from the rest of the the disability population, because the stories that are being told are this very, like, inspiration heavy, kind of, gross nonsense. But, also, they are experiences that not a lot of the, the greater disability community can relate to.

Lily Newton:

Yeah. I think that makes total sense. And it's, like, it's interesting to think about, like, being an athlete as an identity as well because we see this in other, like, identity mixtures where it feels like, to be a part of 1 identity. People feel that have to kind of, like, let go of their disabled identity, and there's just this lack of nuance of, like, you can be both.

Amanda Mcgrory:

For sure. And I think it's tricky because as an athlete, right, you want to you wanna be strong, you wanna be powerful, you wanna be strong, you wanna be powerful, you wanna be fast, you wanna focus on those parts of who you are, and what you are attempting to achieve this very competitive, very high performing, piece of your personality. But that doesn't take away from that's just 1 piece of who I am, of who we are, all are as athletes. And as you know, identities are multifaceted. And being a disabled athlete, that's that's a huge part of who I am as is just being a disabled person. And the, the challenges that I face in my day to day life are no different than anyone else with a disability. I think that that part just gets minimized in order to kind of amplify this this very competitive, very high performing, excellence driven piece of competitive athletics.

Lily Newton:

Yeah. That's so interesting and is already kind of, like, changing my biases and my thought. Because I kind of expected that you were gonna say that, like, you feel some, like, left out of the athletics community, but it's it's interesting that the barrier feels like from the disabled community, actually. And I'm sure there's nuance to that. But that's very interesting, and I know later in this interview, we're gonna get more into inspiration overcoming all of those things. But just to give some background to our listeners, let's talk about your, like, athletic trajectory because you went to college to play basketball. You started playing sports when you were 11 or 12.

Erin Hawley:

Yep.

Lily Newton:

And then so when did you make the switch to marathon running, which ultimately led you to the Paralympics and medals and things like that?

Amanda Mcgrory:

So I started, playing wheelchair basketball and also doing wheelchair track and field, when I was 11. The city of Philadelphia. I'm originally from outside of Philadelphia. In the city of Philadelphia Parks and Rec department had just started this, like, new kids adaptive sports program. And so they reached out to people in the area through other organizations, through hospitals to try to recruit kids, to become a part of that program. And so I started doing both really early on and loved them both from the start. As I was getting older through high school, continued playing both sports, and I really, really wanted to go to the Paralympics in track and field as a wheelchair racer. It turns out I was just doing the wrong events, which we'll get into in a second.

Amanda Mcgrory:

So I ended up being recruited to the University of Illinois to play wheelchair basketball. Started there in 2004 and played all the way through 2009. But I was also there as a dual sport athlete. So my focus was basketball, and I was there on a basketball scholarship. But as, like, cross training, I was still a part of the track and field team. And so around 2006, my well, not around 2006. In 2006, in fact, in May of 2006, my coach and 1 of his friends bribed bribed me to do a marathon in Colorado

Erin Hawley:

Awesome.

Amanda Mcgrory:

Which I found out later. They fabricated this whole story about going to this camp and that I wasn't really eligible, but they would let me go. And in return, I had to do this marathon. Anyway, I found out later it was all a bunch of baloney, like, 10 years later. But did the marathon, finished second, or third. And part of the the deal with the agreement was that I had to turn over my prize money to, like, pay for my registration for this camp that anyway, all goes to lie. But, regardless, I did that. And as a as a college sophomore, giving away a check for a $1, 000 was probably the most painful thing I experienced.

Amanda Mcgrory:

Yeah. So 3 weeks later, I got talked into doing another marathon. And the selling point for me was that I could keep the prize money if I won any. Nice. And that was it. I ended up winning the race, really, really close to the course record. I took, like, 15 minutes off my time, and I was like, oh, I guess I guess I'm a marathoner now.

Lily Newton:

That's awesome.

Amanda Mcgrory:

I mean ridiculous story.

Lily Newton:

It's a great story.

Amanda Mcgrory:

Fast forward to 2008, and I was invited to tryouts for wheelchair basketball as well as trials for track and field, and ended up making the switch to really focus on wheelchair racing then and went to the Beijing Paralympics, as wheelchair racer as part of the track and field team, and then just kinda went on from there.

Lily Newton:

That's awesome. What when you were in school, like, on doing as a dual athlete, were you, like, immersed within the athletics department, or did you feel like kind of the, wheelchair athletics were separate?

Amanda Mcgrory:

So something that's really interesting about the University of Illinois is the way that the adaptive athletics program is set up because it's set up within, DRES, which is Disability resort. Yep. Recreation Education Services now. They change the acronym every once in a while. Yep. So it's set up within that department, and that's a division of the College of Applied Health Sciences. And because the adaptive athletics program works out of that, like, division, we actually fall under the college of AHS, not within

Erin Hawley:

Oh.

Amanda Mcgrory:

The DIA and not within the athletics program. Okay. So our funding is separate, and everything is separate from from the DIA and from the non disabled athletes competing at University of Illinois. Interesting.

Lily Newton:

Drez Center. I love that place. I listeners, I also went to the University of Illinois, and they have a pretty great, like, disability resource system in general. That's where I got my ADHD diagnosis and had just really great support. So, great good school to go to. 1 second. My cat's having a moment.

Erin Hawley:

Hey. Can you not? Okay.

Lily Newton:

Okay. She's good. She's just having a moment. Come sit here and don't make a lot of noise. Okay. Erin, you wanna do the next question?

Erin Hawley:

Yeah. Sure. So as a athlete, especially with Paralympian, I'm sure you get, like, a lot of, oh, how inspirational you are and all that. Can you tell me how does that make you feel, and how do you navigate that in your daily life?

Amanda Mcgrory:

So I think that the the inspiration issue is a complicated 1, especially when you are talking about athletes and talking about people who are doing something that is extraordinary and could be considered inspirational. And even if you look at the if you look at non disabled athletics, if you look at the Olympics, a big part of the story is who the people are, where they came from, what sorts of challenges they faced, and obstacles they overcame in order to be able to achieve this incredible thing and be the greatest gymnast in the world. And so I feel like I kind of zigzag around this issue a lot as an athlete with a disability because, yes, there are things that I have done, and achievements that I have that are exceptional, that I worked really, really hard for. That, yes, you can be inspired by someone having 7 Paralympic medals. You can be inspired by someone setting world records and winning marathons and all of those things. But I think it is it's difficult because non disabled athletes have the the luxury of existing outside of that story. They are more than a tale of inspiration. That's just a piece of who they are.

It is a piece of their identity. For athletes with disabilities, that becomes the whole story a lot of times. And because that inspiration porn, stories of overcoming disability and overcoming these challenges, we're so, like, oversaturated with them in the media. That's what people expect, and that's, I feel like, what gets pulled out of the story. So we talk about this a lot at the USOPC and how to tell those stories in a way that we're focusing on athletic achievements as inspiration and not existing and not daily life. And those things in themselves shouldn't be inspirational. They're doing nothing at all to, to normalize disability. And, yes, it is difficult as a person with a disability to exist in a world that is not made for you.

But by exceptionalizing that and making it this amazing inspirational story that I buy my own groceries, you're doing you're doing nothing to, 1, help the world become more accessible, and more open and understanding to disabilities. To increase that level of education, you're just carrying on all the same stereotypes and doing doing nothing to push the narrative forward.

Lily Newton:

That's such, like, a poignant thing to say and I love that you bring up the getting groceries because I feel like we've we've talked about that example with other guests in the past that like if you don't call me inspiring for doing like day to day tasks. Exactly. But it's it's interesting like I like the way you phrase it that it becomes the whole story. And that's really the the issue there is, like, I I get it, sort of, I guess, when a non disabled person says something like, oh, that's so inspiring that you're doing this basic thing. But it's like it I think the thing that is so harmful about it is that 1, it shows just how deeply underestimated we are by most people. And then For sure. And then exactly what you said, it just it becomes the whole story. But it is it it is complicated though with with what you do because, like you said, you the things you're doing are exceptional.

And you you've done certainly even just hearing you say, you know, I wanted to be a Paralympian. Like, you knew you wanted it and then you went and got it. That story in itself is inspiring. The, like, a child who knew they wanted something and dedicated themselves to it. Dedication is inspiring. But then because of ableism and inspiration porn being so big on the Internet, it takes away from that. You know, Erin and I have talked about an insidious part of ableism is that, like, it can kind of take away our own ability to celebrate ourselves because every once in a while, like, like, even when talking about this podcast with people, they'll tell Aaron and I, like, oh, that's so amazing. Like, you're so inspiring doing that.

Lily Newton:

And the second that inspiring word gets used, it's like, okay. Like, do you actually think what we did is cool? Or are you like, wow. These 2 disabled girls, good for them. So I'm I'm curious then. It seems like you've experienced that as well, the, like, taking away your own joy because you're worried that the praise is coming from a place of underestimation. So how do you celebrate yourself and celebrate your accomplishments in the face of that kind of, like, daily ableism?

Amanda Mcgrory:

So rewinding a tiny bit here just for, like, day to day activities being considered super inspirational. I think the hard part there is it's really that is exposing the internalized ableism. Right? That is that is someone like, oh my goodness. This so amazing. It's so amazing that you're going and buying your own groceries. It's because in their mind, what they have been taught, what they believe is that you shouldn't be able to do that. Their expectations for individuals with disabilities are so low that they think it is incredible that we are capable of deciding what we wanna eat for dinner. And that's the part that I think is really difficult.

For myself, I think that I have always it is just like a piece of me that I have always wanted to push boundaries and break barriers and see what I could do. And so part of that is that I think that nothing is ever enough. None of these I always wanna do more. I always want to push things further. And I think as a result of people being very inspired by me as a kid, because, you know, I would go out and play with my friends, those very basic day to day things. I was like, oh, you think that's inspiring? Wait until I show you what's really inspiring. So I feel like I've always had this little piece of me that's, like, you think I can't do this? Well, let me show you.

Erin Hawley:

That is very relatable because -

Amanda Mcgrory:

My very sassy Philadelphia side.

Erin Hawley:

Yeah. I feel like I feel like, I feel like I was gonna say, I feel like I am also an overachiever Yeah. Because I feel like I have to be. Because I feel it's like if I don't say go to college, people will think I didn't go to college because of my disability and that's just not the case. I did go to college, but, like, you know what I mean? Like, everything not everything I do, but a lot of what I do is to just say, see, I did it. Yeah. Now what? 100%. I think that could be that could be inspiring, I think, to other disabled people.

I think that's important too to consider that race would be inspiring to other people who have a disability, And I think that's really powerful.

Amanda Mcgrory:

I think it is. I think it's hugely important. And it took me a really long time to see myself as someone who had the potential to be a role model or the potential to inspire kids. But when I look back to where I was so I was became a wheelchair user at 5, started playing sports at 11, but that was the first time I really had a community of other people with disabilities. And I think back to how powerful it was for me for the first time to meet an adult with a disability that was active, that had a family, that had a job, that was doing all these things. And not as an 11 year old. That was something that I had really ever thought about. Like, can I can I do this? Can I be this person? But kind of, like, subconsciously, just being there and being immersed in that world.

And the same thing, being a part of the adaptive sports program at the University of Illinois, which is full of incredibly high achieving individuals in sports and otherwise, was just this, like, yeah. Of course, I can. Why why would I not be able to do that? And that was so important to me, and it changed myself and my confidence and the way that, like, I saw the world and felt about myself so much as a kid that I was like, I want to be that person for somebody else.

Lily Newton:

I love that. And, Erin, I love what you said there. Just everything that was just said because I think that that is what a great way to combat what we were just kind of talking about that feeling of like, well, what if I am inspiring? But I don't want it to be taken. Like, I I I've never thought of it through the lens of, like, for my community. Like, I'm I'm cool to be inspiring for my community and a role model for, like but it's that kind of othering of, like, nondisabled people looking at you and being like, oh, that's so inspiring. But that is a great kind of reframe of, like, I'm not gonna get upset at being called inspiring for this because I'm gonna remember that, like, there's a part of the sentence that's being left out that's, like, inspiring to other kids like me. And that I think is really, really important. And, you know, I'm even just doing this podcast, like, Erin's 40.

I'm 27, and I feel like I'm learning. I get to learn so much, like, just about life, and that's like I'd never thought about that. That, like, oh, I can be inspiring for a specific group instead of just inspiring getting groceries. Well, let's talk about overcoming. Erin, you'd have a question on that? Wait. You're you're muted.

Erin Hawley:

I am muted. Okay. So it there's this script about overcoming disability. So what to you is the difference between overcoming disability and accepting your own disabled identity?

Amanda Mcgrory:

I would like the overcoming narrative to go away entirely because I think all it does is reinforce both disabled and successful. And that in order to find success, in order to to meet these challenges, in order to grow, you have to overcome your disability. And it cracks me up, to be honest, whenever there are stories about, specifically, about Paralympians who overcome their disability be to become Paralympic champions because spoiler alert here is that you can't be a Paralympian without a disability. So, like, actually. But I think that it's all about disability, like everything else, exists within a spectrum. And it's all about maximizing your potential of the the abilities that you do have, learning how to work within your own limitations. And that's not overcoming your disability. That is accepting and learning your disability, learning about your disability, and letting it become a piece of who you are and your identity and your personality, and then also being successful.

Like, I didn't overcome my disability to learn how to drive. I learned how to drive with hand controls. I didn't overcome my disability to do a marathon. I did it in a wheelchair. There's it's so so this is I hate this even more than the inspiration narrative, because I want I want these stories to focus on, like, yes, I am disabled. And, yes, I did this thing. And, yes, you can do both. And you can be both.

Erin Hawley:

Totally. And, like, it's more about overcoming ableism.

Amanda Mcgrory:

Yeah. For sure.

Lily Newton:

Yes.

Amanda Mcgrory:

1000% about overcoming ableism. And the preconceived notions that the non disabled community has. But also your own internalized ableism, which is the thing that I think is not addressed nearly enough. And I think that it's a tricky thing as we were talking about earlier with disabled athletes and Paralympians, that that part really gets minimized. And I think sometimes in order to to fit in to the athletic community, Some of that gets internalized a little bit more within disabled athletes.

Lily Newton:

Oh, interesting. That makes that makes total sense. And it kind of reminds me of, like, having being autistic and the way that that is like a non apparent disability, like masking and like hiding being autistic if you have the ability to be like high masking, to try to fit in. It ends up being much harder on your nervous system on everything. And I I appreciate what you said about the, like, I didn't overcome driving. I did it with these adaptive controls. I did these kind of things. And I think that that is important.

You know, this episode, when it comes out, is gonna come out in July, which is disability pride month. And I think that this is an important conversation in pride because if you're overcoming instead of accepting, there's a chance that you're gonna not give yourself the accommodations you need to be, like, at peace, have joy, comfortable. Like, there's when you get rid of the overcoming narrative, then there is so much space to be comfortable. And I think that sometimes we jump from, like, having a difficult time with identity to being really proud of your identity, but there is an in between course there. And that course includes accommodating yourself and building a life that is enjoyable instead of just, like, brute force trying to prove that you can do something even though people think you can't.

Amanda Mcgrory:

For sure. I think that is really that's so, so important, and it's something that I think back to myself as a kid when it was all about proving that I didn't need accommodations and proving that I didn't need mobility devices and proving I didn't need things because I could I could do it without it. And I think that there is a there is a balance between being resilient and being adaptable and something that people with disabilities know really well because we are forced to do it all the time. But also, giving yourself and allowing yourself to to have the things that you need to make your life better.

Lily Newton:

I love that. And, yeah, like, you're it is worth it to do things to make your life better. Like, that's that's a hard thing to learn, you know, like especially as as women in general women with disabilities like there is this level of just like put your head down accept it and prove people wrong but it's just so worth it to do what you need to do to enjoy your life. Yeah.

Amanda Mcgrory:

And the more you do it and the more exposure you exposure you get and the more people see it, I think the more that does to change the overall perceptions of disability and what it means to be disabled, and also makes people think twice about what their own preconceived notions are about what disability looks like and the things that they do. Like, you never see anyone at the store with a disability, so why does it matter if you block the curb cut? My least favorite thing in the entire world.

Lily Newton:

Yeah. Oh, cars that park, like, on the sidewalk and Yeah. Unbelievable. It's just the worst. And, yeah, it's that self fulfilling prophecy of like - well I don't see disabled people here so the accessibility doesn't matter and it's like well but then you'll never [see] disabled people there if you're blocking their only entrance.

Amanda Mcgrory:

So so you know that lack of understanding and just like deep underestimation that many nondisabled people have I think directly leads to, like, invasive and prying questions about things that are especially, I'm sure as an athlete, like, you're you're like, why are you asking me about this? Like, ask me about the race I just ran.

This is and this is something else that we have been as we as an organization, as the United States Olympic and Paralympic Committee, have been doing, like, media training, not for athletes, but for media outlets. That's a really, really big thing that we've been focusing on leading up to the Paris Paralympic Games is, so why are you asking this person their origin story? Does that have anything to do with the story you're trying to tell? Is it important to know how or why they are disabled? And if it is, because sometimes it is, that's fine. But stop and ask yourself if you need to tell everyone 3 paragraphs on how this person became disabled when really the point of the story is that they just won a gold medal in something.

Lily Newton:

Yes. Absolutely. And that's something, you know, we have focused on when, like, creating this podcast was kind of having that space where, you know, for some, it is freeing to have a space where you can say, like, this is my story, this is my diagnosis, this is where it is. But a lot of the time, we go through an entire episode without ever saying any of our Because it's like Yeah. We especially with, you know, we have guests that have done really cool things, you included. It's like, if you need to know, Google. Like, go ahead.

Amanda Mcgrory:

The other thing. You can find anything else, anything you wanna know about me through Google. You can find out what my birthday is. You can find out what my diagnosis is. You can find out how many sisters I have.

Lily Newton:

Yeah. It doesn't need to be the it doesn't need to be the meat of every single interview. Yeah.

Erin Hawley:

When I, graduated college, a newspaper went to the graduation Oh. And interviewed me. And I said, why why why? And they asked me the first question. How did you overcome your disability, and how hard is it? How hard was it to get your degree? I'm like, it wasn't hard. Bye.

Amanda Mcgrory:

Goodbye. Goodbye. Also, still using a wheelchair did not overcome my disability. Yeah. Sorry to break the news to you. Yeah. I have not been healed.

Erin Hawley:

So I know that you're a broadcaster yourself. Can you tell me how did you get into that, and how do you navigate asking other disabled people questions and being respectful of them.

Amanda Mcgrory:

Falling into broadcasting was the happiest accident of my life. So I retired from competitive athletics after the Tokyo Paralympic Games. I had a obligation with a sponsor, and so I actually retired sometime in 2022. And have a really long standing relationship with the Chicago marathon and with all of the major marathons within the United States because I was a professional marathoner for a decade. I did all the races multiple times. And the, elite athlete coordinator for the Chicago marathon called me up and was like, hey. You're not racing this year, but we've really been trying to get better television coverage of the wheelchair division specifically. The local news stations have committed to to putting a camera on the wheelchair division.

We wanna broadcast more, but the problem is none of our analysts really know anything about wheelchair racing. And so it just ends up being this really awkward, like, oh, there they go. They're going really fast, and it's just kind of this, like, super weird uncomfortable situation. And so she was like, how do you how do you feel about it? Like, we'll bring you in. We'll set you up. We'll go through all the preplanning with you. Do you think this is something you can do? And 1 of the the best and worst parts of my personality is that I am, like, exceptionally overconfident in myself and everything that I can do. So, of course, I was like, oh, yeah.

Definitely. No problem. I can do that. I've never been on live TV before talking about a race as an expert analyst, but I can probably do that. And it actually turned out to go really well. Super comfortable, and each 1 I do gets a little bit better. So I cover the Chicago marathon. Got a really lot of got a lot of positive attention from it, and then it just kind of started to to gain momentum.

And I got asked to do more and more, and I'm going to be an analyst for Paris Paralympic Games covering track and field this summer, which I'm really excited about. Congrats. Also, I just realized I didn't answer any of your question, Erin. But the fun thing about what I do is that it's not a it doesn't end up being a lot of interviewing, and it's more just live in the moment sports analyzing. And so, I get to minimize the disability part of the story and just talk about, this is what they're doing. This is the technique. These are the tactics. This is this person's strengths and weaknesses as an athlete.

And when I get asked questions about, like, oh, tell me about this person's disability or whatever, I can just change the subject and not answer that, because that's not why we're here. It's not what we're talking about, unless we are. Unless a big part of the story is this person's new to wheelchair racing because they were just injured and blah blah blah blah. But, otherwise, I can just kind of flip that narrative, and we can move away from talking about their origin story, and more about where they are now and why what we're watching is interesting.

Lily Newton:

You know, it's funny that you say you didn't answer the question the first time because I think you did in that, like, the answer there is, like, because you're disabled yourself. Like, there so there isn't like, that's the understanding, and I think it's a good reminder to, like, employers and people who are hiring or finding people in general that, like, no matter how much experience someone has in, like, a certain field, if we're covering disability culture, if you're doing medicine for disabled people, whatever you're doing, a disabled person themself is going to be better to tell that story, to give that advice, to do practice that medicine than anyone else. I even think about, like, you know, Erin and I didn't have much podcasting experience, but we understand the identity that we're talking about, and that's why Easterseals trusted us to be a podcast host. And I think that that's so smart because with when things come from within the community, then, you know, you're you get to control that narrative just like you you said. So I think that that is a important story to share that, like, yeah, you stumbled into it, but you're phenomenal at it. And people like watching you because you know what you're talking about because it's your lived experience.

Amanda Mcgrory:

Yeah. That representation is so, so important, and I feel like it's it's a place where the disability community falls behind other underrepresented communities. And a lot of times, it is doctors and people in the medical community and not actually disabled people themselves talking about their lives and their experiences. It's other people talking for us. And that's something that I really, really think is is important to change and is important to to get more representation for people in all aspects of the disability community, medical model of what this disability looks like.

Lily Newton:

Yes. Exactly. Or parents.

Amanda Mcgrory:

Or parents or siblings or that guy who had 1 kid who used a wheelchair in his class in 4th grade.

Erin Hawley:

Yeah.

Lily Newton:

Yeah. I can -

Erin Hawley:

I'll join her.

Lily Newton:

No. You go.

Erin Hawley:

No. You go.

Lily Newton:

Okay. I was gonna change topics. So if you have something to do with your head. Okay. Cool. But, yeah, I just think that that's, like, so crucial and we're moving towards a a world with better representation, but you're so right that, like, there's no other marginalized identity group necessarily that's, like, okay, we're gonna interview parents and providers for these people to get their story. And I do think that that again that comes from that underestimation of thinking that like yeah. Like all these disabled people, they are not gonna be able to tell their own story.

And yeah, I just think that that I would never think when I well, you know, you hear the phrase representation matters. I wouldn't necessarily think to myself, like, sports broadcasting. But, like, oh, yeah. In every facet of life, actually, representation matters. Like Anytime.

Amanda Mcgrory:

And the number of messages I've gotten from high school and college kids that have disabilities and are like, oh, I really wanna go into sports broadcasting or I really wanna do this. And I have never seen someone who looks like me in that field, and this is huge. That's awesome. Yeah. That's incredible.

Erin Hawley:

That brings it back to that whole inspiring our community.

Amanda Mcgrory:

Yeah. That's part of inspiration. That's okay. I will accept being inspiring in that way.

Erin Hawley:

Absolutely. Alright. So now we're gonna jump to the 3rd part.

Lily Newton:

Wait. Before we do that, Erin, I wanna get into 1 topic that Oh, great. That I'm interested in. And so it's kind of a a shift but I think it's an important conversation to have on this podcast. So, when you go on your website and are reading your kind of story which again you can Google her so we're not gonna go through it all on here but there is a portion that really piqued my interest in when talking about, you know, after your diagnosis as a child dealing with all of this. The way that you began to kind of cope was by restricting eating and not eating. And I think that that is it's really cool that you're open to talking about that and sharing that experience. My family has been deeply touched by eating disorders, and I think that, so often, especially when women deal with anything eating disorder related, vanity is what is brought up.

Like, oh, they wanna be thin ideal women. When in reality, in my experience, it's usually actually looking for control. Yeah. It So what yeah. I wanna hear about your no. I just wanna hear about your experience with that and what you think about that.

Amanda Mcgrory:

This, like like a lot of other things, was something that I didn't talk about for a long time. And it was something that I was really ashamed of. Partially, because I thought that it made me look weak. Mhmm. And because as we talked about before, as women and as members of the of the disabled community, we we don't want to talk about those pieces of who we are. But I thought that it really helped tell my story in, 1, how important it was for me to find a a community of other disabled people that I could relate to, but also help anyone else that is going through that transition because it's hard. And a lot of people say really, really hard to become disabled as an adult because you have you have a whole life and you have this whole identity that you have built. But it's also hard as a kid.

And I, as a as a 5 year old who was diagnosed with a rare neuroimmune disorder who went from being able-bodied to paralyzed overnight with no, like, real known reason, I felt like everything was out of my control. I woke up today, and I can't walk. Am I going to wake up tomorrow, and I won't be able to use my arms, or I won't be able to speak, or I won't be able to see? Or maybe I'm gonna wake up, and everything's gonna be normal again. And I I felt like I had completely lost any control that I had as a 5 year old. And the 1 thing that I still had the ability to control was whether or not I was going to put something in my mouth and swallow it. And that was really, really difficult for my parents, I'm sure. I was hospitalized multiple times, hit a feeding tube. Through our pediatrician, they found a pediatric eating disorder specialist.

And I remember a, like, breaking point for me was him talking to my parents while I was there about all the interventions they had done and, trying to force nutrition into me. They were feeding too, and he looked at them and said, well, if she wants to die, let her die. And that was the moment that I was like, well, I I don't want that. And shortly afterwards, I found sports, and I found a community. And that really helped me deal with all of that, like, loss of control that I felt because, like I said, it was the first time that I had met other people who were my age and active with disabilities, but also older people who were active with disabilities. And that's when I was like, this is okay. There's things that I can still do, and I'm gonna be alright.

Lily Newton:

Thank you so much for sharing that and just being willing to be vulnerable and talk about that because I really do think that that, you know, so so often eating disorders are met with such medical intervention. And, obviously, medical intervention is important, but I do think it is so easy to write off an eating disorder as, like, this is this problem based on vanity or

Erin Hawley:

Yeah.

Lily Newton:

How they wanna look or things like that and to not get to that deep root. And I really do think that a lack of control in many aspects is that. Because, eating disorder rates are incredibly high in the neurodiverse community. And, I I think often about, like, my experience as an autistic child and, you know, walking through life kind of feeling like, it seems like everyone has this rule book of how to be human and my brain wasn't born with that. Yeah. So it makes sense that, you know, that that does feel like a lack of control. So it makes complete sense that exactly what you said. Well, I can control whether or not I'm gonna swallow this by the food.

Like, I can control that. And, you know, this per like, seamlessly transitions us into part 3 of this interview where we talk about the Easterseals pillars, where Easterseals is working towards equity and inclusion when it comes to education, employment, health care, transportation, and a big 1, community. I think it is so interesting and poignant that it wasn't some specific medication or therapy that was what was able to help you, but a community of people who understood you and who could show you a future. So I'd love to hear more about, like, what you think that power of community is and how we just, like, continue to create communities for young young disabled people, but just young people in general who feel that lack of control.

Amanda Mcgrory:

It is absolutely everything. And it was everything for me, and it's the reason why I'm still involved in all of these, like, junior level, developmental level adaptive sports programs, because finding that community and meeting other people was so, so, so huge. And it's not to say that I didn't have friends at school without disabilities because they did, but there was always a piece of who I was, a piece of my identity that they could never relate to no matter how hard they tried. And it was just kind of this, like, I had these these 2 worlds and these 2 groups of friends. But by having by having 1, it helped me kind of blend my life into the other, and learn how to, to relate across those lines, which I think was really, really important. And I I know that sports are not for everyone, but I really strongly encourage any parents who have a a child with a disability to at least try and look at it at Apple Sports Program. If it's not something they stick with, it's not something they're super interested in. But it's a big part of for non disabled kids.

Every kid plays soccer. That's just a part of, like, as a kid growing up, you're going to get involved in in sports at a young age, because you learn so many things about yourself. You learn independent skills. You learn teamwork. You learn how to, like, healthily control your competitive urges. Mhmm. How to cooperate with others. All of those things.

And I think that disabled kids miss out on that a lot. And that's something you can find from these these sports programs. And maybe it's not that, and maybe it's it's music or board games or debate or something else. But there aren't a lot of spaces in this world that are exclusive to to individuals with disabilities, and adaptive sports is 1 of them.

Lily Newton:

Yeah. That whole time you were answering that, I was thinking about you saying that, like, well, to play wheelchair basketball, you need to be in a wheelchair. And that is that, like, that's very important. And maybe, you know, if you're a parent listening or something and you're like, well, my child would hate sports, like, because I get it. I was a kid that didn't like sports. But it's that, yeah, that exclusivity. Like, maybe it's a a theater group for people with disabilities or but it is specific. It's that or an Easterseals program or camp that has Absolutely.

A lot of kids with disabilities. Like, I I think about that film Crip Camp, that Judy Heumann talked about. Like, the, just the power of being in a room of a bunch of people who look like you. Wouldn't you have been or look different than you, but in have similar differences or things like that. Like, that ability to look around and be like, I'm not alone and I'm gonna be okay, and we can have joy together is really important in that exclusivity, which I I do think, you know, we need more groups like that that are a bit exclusive and do well. I mean, that's this podcast is quite And that's a place where you don't have to be. You don't have to be self conscious, and you don't have to be

Amanda Mcgrory:

And that's a place where you don't have to be you don't have to be self conscious, and you don't have to to mask, and you don't have to try to minimize your symptoms, and you don't have to to force yourself to fit in. It's very it was incredibly freeing.

Lily Newton:

I love that. And, yeah, so important for kids to find community.

Erin Hawley:

I wanna, like, jump to a different topic. Because Easter Heels does a lot for is starting to do a lot for airline accessibility, and I'm sure you know the horror stories of people, especially those who use wheelchairs and traveling on a plane. Can you share your experience with that? Have you encountered, you know, damaged chairs or anything like that?

Amanda Mcgrory:

So I travel a lot. A lot. A lot. And I always tell anytime I go to to board a plane or I check-in at the airport, the the gate in shows, like, oh, you know exactly what you're doing. And I'm like, I travel a lot. And they're like, oh, yeah. And I'm like, no. No.

No. Like, a lot. Like, 50 to a 100 flights a year, a lot. So I have and this is 1 of those things that is like the the sad truth in reality. I have made changes to my my equipment, specifically to minimize the chances of damage. And what I have found is on my my everyday chair, the fewer number of moving parts I can possibly have, the better. For a very long time, I had no wheel locks at all because that's something added on that can be broken off. I've been really lucky that I haven't had a ton of serious damage.

Only a handful of times have I had any damage to my personal devices. But it's always shocking anytime someone non disabled travels with me for the first time because I warn them that it is probably the most dehumanizing experience you can have as a person with a disability. Airlines and airport staff are so worried about the liability side of things that they very much forget that they are dealing with human beings. And not only are they dealing with human beings, but they are dealing with people who this is their lived experience. This is their day to day. When I tell you, I don't need you to lift me in and out of my chair, and then I can do it myself. And I tell you that I don't need you to push me up the ramp. I'm not doing that because I'm being difficult or trying to prove that I am independent to you.

I'm telling you because I do this all the time. This is my life, and I know the best way to do it because it is my body and my equipment. And the the number of times that I have to to argue with people is I got so this is a terrible thing. And I probably shouldn't even be telling you, but I'm going to tell you right now anyway. So I got so upset with people trying to push me up the jet bridge. I've started just, like, falling over when they come up behind me and shove me, Because I don't have I don't have a lot of back support on the back of my chair. And so, normally, when someone comes up behind me, they shove my backpack or they shove me, like, between the shoulder blades, which if you were not expecting is enough to, like, really throw you off balance. Mhmm.

And so instead of, like, fighting against it and just, like, telling them no, I've started just, like, falling forward and dropping my bag. And then they're like, oh my gosh. I'm so sorry. And I'm like, this is why I told you not to do that. This is why I asked you to please not push me. Not because I wanted to struggle up this ramp and to prove to you that I could do it myself, but because it is more dangerous and it is more difficult if you try to help.

Erin Hawley:

I love that. That's, like, very, smart.

Amanda Mcgrory:

But it's frustrating that it it gets to that point. Right? And I'm so frustrated, and I just know that no 1 is going to listen to me that that's how I've decided this is the best way to combat this.

Lily Newton:

Yeah. And, you know, being like an organization that does advocacy for things like this, it is easy to get caught up in the numbers, like, because that's what makes people listen. They're like, 31 wheelchairs a day damaged, this many complaints filed, blah blah blah. But that realization of, like, the dehumanizing effect of it, I don't think I don't think, like, lawmakers understand that. Or people who are working on airline policy, I don't think they understand that, like, it's it's a full on dehumanizing experience. And even even, you know, you saying that, like, I've been very lucky that I've only had minimal damage a few times done to my chair. Imagine if you were like, I've been very lucky. I've only been my legs have only been bruised badly.

They've never been cut off. Like, that would be wild.

Amanda Mcgrory:

Like It's a totally different scale that we're working on here.

Lily Newton:

That's so wild. And, yeah, I think that that just goes to show, like, it's amazing that you have an incredible career and have been able to, like, get to the point you are where you are traveling so much, and there are a lot of careers that need travel. So accessible air travel is crucial to a an accessible workforce. And this is very important, so I appreciate you talking about that.

Amanda Mcgrory:

There's so many small changes that could be made Yeah. That would make this better. Especially just training airport staff, aisle chair operators, any of the the assistance contractors. Just, like, listen to people.

Erin Hawley:

Ask them what they need. If they ask you not to touch them or not to lift them, don't do it. If they tell you what the best way to help them is, just listen. I I never get upset ever ever in my daily life with someone asking me if I need help. If it's grabbing something in the grocery store, if it's getting my chair in or out of my car, if it's at an airport. But if I say no, for the love of god, please listen to me.

Lily Newton:

Yeah. Absolutely. And that's just, like, basic consent. Like, don't and yeah. Even I think, like, having your back pushed by someone else unexpected. Like, that's just that's, like, basic bodily autonomy. Don't touch me if I say I don't need help. Like, yeah, that's wild.

Amanda Mcgrory:

We've talked about, right, though, that the the nondisabled community knows better. Yep. And they know what we as as disabled individuals need Yeah. Better than we know ourselves.

Lily Newton:

Yeah. That's that's always the thought process, and I think I've said it before, but, like, it if there's 1 like thesis statement out of this podcast it's that we are the experts on our own experiences. 1000%.

Amanda Mcgrory:

Yeah. Okay well And our own bodies and our own needs.

Lily Newton:

Yes and our own choices and what our happiness looks like. Like other people don't get to define those things for us. Completely. Yeah. I think it's just wild that literally we could interview anyone who in the air travel is just such a exactly what we said, dehumanizing experience, and I hate that. Okay. We're almost out of time, and, Erin, I could talk to you for hours. This is so fun.

This would be great. This is awesome. Before we wrap up, I want to ask this question because I know you like talking about this and I wanna see your excitement. So 1 thing that we talk about at Easterseals is the importance of teaching disability history. We have some affiliates who have done entire teach disability history campaigns, they're really incredible. And, it was through prepping for this interview and looking, at, like, the work you've done and things and other interviews you've done that I actually learned as an alumni of the University of Illinois, but it was through this getting ready for this interview that I learned the U of I's role in bringing disabled people into athletics and onto college campuses. So I'm wondering how has your work as an archivist and when you were getting your, degree in information library sciences, how has your work, like, helped you better understand the history of, adaptive athletics and, like, the history that led to where you are right now?

Amanda Mcgrory:

You're right. I am so excited to talk about this. This is my favorite thing ever. So my my second semester of graduate school, actually, I was in Rio for the Paralympic games. And as a result, I took a really, really limited class schedule. 1 of the things I did was work as a research assistant, for former director of DRES at the University of Illinois, who was working on writing a complete history of adaptive sports at the University of Illinois, as well as just, like, the history of all of that and the history of people with disabilities in higher education. And so I got to do a ton of research in the University of Illinois archives. I also, at the same time, took special collections class, where I got to go into, like, University of Illinois.

And that was the first time I was ever, like, looking at super precious rare museum artifacts, and they're like, oh, you can touch them. So I decided I was going to become a, disability sports history expert and also an archivist so I could touch the cool stuff. And within, like, it changed the entire trajectory of my career. But I think it is so so hugely important when we think back to the history of individuals with disabilities. And it wasn't until 1948, the first class of disabled veterans came into the University of Illinois. And at the time, nothing like that had ever been done. It was 22 soldiers who had been paralyzed in World War 2 who wanted to use their GI bill. And at the time, a grad student, Tim Nugent, who became doctor Tim Nugent later on, developed this program where all of these students could come in.

They were at the University of Illinois Galesburg campus, which was the perfect place to start this program because it was a decommissioned hospital. So it was 1 of the few public places that was actually accessible to individuals in wheelchairs, with accessible bedrooms, bathrooms, everything that you would need. And in addition to being students and taking classes, they also had required courses on activities of daily living and transitioning to life as someone with disability, whether it was learning how to drive, learning how to hire personal care assistants. And then on top of that, required recreation programs. And the whole thing was built off of this model that rehabilitation would be more effective through recreational programs where you actually learned skills that you would need. You would learn more about moving a wheelchair and controlling your body by playing wheelchair basketball than you would by going into a physical therapy office and doing the same repetitive motions over and over. And that just continued to grow. And so the University of Illinois has this incredible amazing history of being not only, like, groundbreaking in accepting individuals disabilities into the university, but also the first organized collegiate sports programs in the 19 forties.

This program was also super, super instrumental in developing all of the architectural standards that the ADA is based on. And they did that in the 19 sixties with this group of students. So outside of, like, the original DREZ, which was this, like, temporary tar paper building that was built for the this influx of students coming in from World War 2. They had what they called the ramp to nowhere, and it was just this super, super long giant ramp that they could adjust the angle of. And that's how they came up with the, 1 inch for every 1 foot was by having individuals, different levels of disabilities in wheelchairs push up the ramp and see what was hard and what was what was doable. So there's this just, like, incredibly huge expansive broad history of the U of I beyond athletics, just with disability rights and inclusion on top of that. And it's wild because I had lived my entire life pretty much in Champaign, Illinois until I moved to Colorado. I was there for 16 years.

And the disability community is so well integrated into everything the University of Illinois does. And then on top of that, the town because it's it's a college town. So it was never a question whether something was going to be accessible, whether I would be able to get in or out or use the bathroom because that was just that's just a part of the culture of the town. And I moved to Colorado, and that was the first time that I, like, made reservations somewhere. And I was like, oh, this is up 6 stairs. I can't get in here.

Lily Newton:

I'm so glad you pointed that out. So listeners, I'm from Champaign Urbana, and it is so ingrained that it's not even really spoken about. Nope. Like, I didn't really necessarily realize it until I moved to Chicago and was like why are there steps into every restaurant? Like that's not a thing everywhere else. But then I learned that it is a thing and it's actually Urbana Champagne that's different.

Amanda Mcgrory:

Yeah. It's Urbana Champagne. The the university for all of their campus buildings essentially accepted what is now like the ADA's architectural standards in the 19 sixties, 30 years before the ADA even existed, which is just wild to think about. That is so wild. Such a cool place.

Erin Hawley:

That is a good 1.

Lily Newton:

Yeah. Come visit me, Erin. I'll show you around. I'll tell you. Show you all my places. It's that's so cool. And also just like a reminder of that there's this huge chunk of history not being taught in everyday education. Mhmm.

Like, disability history is important and shows us, like disability history is a section of history that really shows us how 1 person or 1 group of people can make major change by just being willing to try. Like, let's just try something else. Let's just, be innovative. I think that's really important.

Amanda Mcgrory:

Community exists as an example of proof that it can be done.

Lily Newton:

Absolutely. It's not too hard.

Amanda Mcgrory:

It's not too expensive. It didn't to a minority of the population. It can be done, and it's really incredible when it happens.

Lily Newton:

Right. And it didn't take away from anything else about the U of I. You know? It's still a leading education place. There's incredible engineering feats going on. There's a supercomputer. Like, there was no amount of, oh, resources only went to this. No. It was just understanding that when you, allow everyone in historic buildings and incredible architecture and all these things that haven't been ruined or destroyed by making them accessible to individuals and wheelchairs.

What an important point that it wasn't destroyed because that is something that people use all the time. Like, oh, we can't make this accessible because it'll ruin it. Wow. I love that. I'm so glad you shared that. I love that this was like your passion and, I'm just so grateful you came on our podcast and shared it with us. And also, it's such a great, like, proof of what we began this episode talking about of what like, yeah, we could talk about your disabled identity or being an athlete and just miss out on this whole section of your story, which is so cool, like, you

Amanda Mcgrory:

This is the funner stuff.

Lily Newton:

Yeah. Like you got such rare books and then now you can like archive things like it's very cool and, I think it's a great literal example of like don't just get stuck on 1 thing, get to know people because they have cool stories, like this is awesome. And you know I'm like I said I'm from there and I didn't even know this stuff so, thank you for coming on sharing everything you've shared with us today. This is really wonderful. This episode is gonna come out during July, so happy disability pride month. I'm feeling so much pride in my identity right now. There's nothing quite like just getting to, like, spend an hour going back and forth and being like, yeah. That will will It's really affirming.

It's so affirming and it's like, yeah wait, we do understand each other. And you know the the big point there is that that community. Community is I think probably 1 of the most important ingredients to, baking that pride pie. So, thank you for coming and being in community with us for the last hour, Amanda. This has been really wonderful.

Amanda Mcgrory:

Thank you both so much for having me. This has really been a ton of fun.

Erin Hawley:

Totally. And, to our listeners, I hope you had a good time listening, and we'll see you next time. Another episode of everything you know about disability is wrong.

Lily Newton (commercial segment):

This is a podcast brought to you by Easterseals.

Erin Hawley(commercial segment):

You know, we actually work for Easterseals, but maybe our listeners don't know what we do.

Lily Newton(commercial segment):

That's true. Easterseals is leading the way to full access, equity, and inclusion for disabled people and their families.

Erin Hawley(commercial segment):

And did you know we've been doing this for more than a century?

Lily Newton(commercial segment):

This includes helping disabled people find meaningful employment and addressing health care needs for all ages.

Erin Hawley(commercial segment):

We're proud to serve communities across the country and ready for the next 100 years. For more, check out easterseals.com.