Episode 24: Just Between Us: Understanding Disability Through Community, Books, and Shared Experiences

Everything You Know About Disability Is Wrong Podcast

August 20, 2024

Episode 24 Show Notes

Your co-hosts Erin & Lily have a special in-person segment for the first time ever on the podcast. They Kick things off by discussing the significance of Disability Pride Month and the joys of creating content together as friends who are both disabled.

They also discuss some light-hearted topics like newfound interests—Erin’s evolving relationship with pizza and Lily’s dive into the world of fantasy books, including some great disability representation in certain titles. They get real about the power of virtual friendships, especially within the disability community, and how these connections help navigate their experiences authentically.

Connect with Lily Newton and Erin Hawley.

Transcript

Erin Hawley:

Hey, everyone. Welcome to the segment that we call Just Between Us, where me and Lily chat about important topics that are usually not covered in the other part of our podcast. But Lily is not here today. So it's just me, but it's fine.

Lily Newton:

Just kidding. I'm here. I'm actually here.

Erin Hawley:

In person. Amazing.

Lily Newton:

Hey. Look. It's us in the same room. Listeners, this has never happened before.

Erin Hawley:

It has.

Lily Newton:

Yeah. It has. But not on screen. It's never been captured.

Erin Hawley:

That's true.

Lily Newton:

And if it wasn't captured for content, it didn't happen.

Erin Hawley:

That's exactly right.

Lily Newton:

It's the number one rule of marketing. Hey, listeners. It's us. We're recording this during Disability Pride Month, and, I think one of my most proud parts of being disabled is having you as one of my besties. Totally. In terms of just, like, having friends that you get to make content about your identity with. Mhmm. That's awesome.

Lily Newton:

I don't know if this will come out during pride month. I'm not sure. What do we wanna talk about today?

Erin Hawley:

Well, we had a discussion yesterday about pizza.

Lily Newton:

Oh, yeah.

Erin Hawley:

Very important topic.

Lily Newton:

Darren didn't used to like pizza.

Erin Hawley:

I think I realized why. Because growing up, we always hate pizza at parties in the same place every time, and I think I just didn't like that specific pizza. So I was just like, I hate pizza. But now as a 41 year old lady, I've branched out and tried other pizzas. And, actually, it's delicious if you get the right kind.

Lily Newton:

You could almost say, Erin, that pizza is not a monolith. If you've had 1 pizza...

Erin Hawley:

You've only had 1 pizza.

Lily Newton:

Yeah. For anyone who didn't get that joke, that was a play on the fact that a big phrase we use, disability is not a monolith. If you've met 1 disabled person, you've met 1 disabled person. Right. Yeah. So Erin's expanding her, pizza, and I've been trying to get her into pizza for a while. And this it's only fair that you're getting into pizza right now because I'm also getting into fantasy books right now.

Lily Newton:

Nice. And you've been trying to get me on fantasy books for a very long time.

Erin Hawley:

Yes.

Lily Newton:

There's nothing better than when your friend finally takes up your recommendation.

Erin Hawley:

I'm so excited for you to read The Bear and the Nightingale.

Lily Newton:

I'm so excited too. You've talked about it a lot.

Erin Hawley:

It is a Russian inspired fantasy, historical setting about, kind of paganism and, like, religion.

Lily Newton:

Okay. This sounds awesome.

Erin Hawley:

Yeah.

Lily Newton:

Right now, I'm getting into fantasy the the basic way. I started reading the Sarah J. Maas books, and they've been pretty fun.

Erin Hawley:

They are fun.

Lily Newton:

They are pretty fun.

Erin Hawley:

It is true.

Lily Newton:

Also, I got in because of 4th Wing, which I will say, cool disability representation there. We should try to get Rebecca Yaros on the podcast.

Erin Hawley:

Is it disability?

Lily Newton:

She's got EDS. And Violet, the main character...

Erin Hawley:

Nice.

Lily Newton:

Like, they never outright canon say that she has, but her bones break very easily. And, like, the fact that she has dealt with pain her whole life is what makes her so strong.

Erin Hawley:

Yeah.

Lily Newton:

And I know that and the the dedication in the book is, like, for fellow zebras, which that listeners is from, the EDS community will often call ourselves zebras because there's a phrase in that a lot of doctors are taught in med school that is if you hear hooves, think horse, which is basically, like, think of the most simple, diagnosis based on the symptoms. Like, find the obvious one. But because EDS is often underdiagnosed or not caught, the name is, like, we're the zebras because it's like, if you if you hear hooves, think horse, but also it might be a zebra. So, yeah, that is actually a book that's got disability representation. That could be cool too. It's always cool to see. There's some kind of odd disability representation in Throne of Glass, that series. I won't I won't tell you anything because it's in a later book.

Lily Newton:

At first, I was like, oh, this sucks, but it wraps up. Like, it it's not it it it's it's okay. So don't when you get there, you'll have to text me and be like, I don't like this. I'll be like, just keep going. For any listeners that know what I'm talking about, I wanna leave a comment. Yeah. Fantasy and pizza. Those are the important topics we needed to talk about today.

Erin Hawley:

Yes. Very important.

Lily Newton:

He's important.

Erin Hawley:

I'm looking forward to reading next. I am really excited to get into The Poppy War series, which is R. F. Kuang.

Lily Newton:

Same. And Yellowface was, like, was my first read this year. It was my first read of the year. And, that was an interesting read, as a white passing South Asian person because it's listeners, it's all about, like, race and this person who read the book. It's really good. So that was that was a good one, and I didn't realize that that author had written a lot of fantasy stuff before then.

Erin Hawley:

Yes. I love Babel is amazing. If you haven't read Babel, highly recommend it. It's kind of if you read Babel, you view Yellowface in a in a different way.

Lily Newton:

Oh, interesting.

Erin Hawley:

Not different, but, like, adding texture, adding context.

Lily Newton:

Because that was about, like, language and stuff. Mhmm. Okay. Very cool. Yes. Very, very cool. I keep getting distracted. You guys can't see this on screen, but Erin has a bookshelf right here that

Erin Hawley:

Trying to turn around.

Lily Newton:

Is so beautiful. Oh oh, I can do this. Yes. Wow. This is a special episode. Look at this beautiful bookshelf.

Erin Hawley:

Yeah. It feels like...

Lily Newton:

And my shaky, shaky hands.

Erin Hawley:

To describe it, I would say.

Lily Newton:

Oh, I see. It's up there.

Erin Hawley:

There's, like, 4 shelves. Five shelves?

Lily Newton:

Yeah. Yeah. For there's on screen, we're seeing 5 shelves with a bunch of beautiful hardback, mostly fantasy, but not all fantasy books.

Erin Hawley:

Mhmm.

Lily Newton:

I can't really tell the names of the books because I have incredibly shaky hands, but that's not changing. Mhmm. My sister is a doctor, and the other day, I was doing makeup in front of her. And she was like, do you need me to prescribe you something for your tremor? And I was like, what are you talking about? She was like, well, the way you shake. And I was like, no. I don't and then now I'm I'm very hyper aware of it. She wasn't actually she was she was kidding, by the way, but I do have a tremor a little bit low. I can't I just can't hold my hands still for very long.

Erin Hawley:

Yeah.

Lily Newton:

Being still is overrated.

Erin Hawley:

Absolutely. Move around. Move around. Everything.

Lily Newton:

Yeah. I hope that I'm feeling real silly in there for a second. I said, I hope that, you all had a wonderful disability pride month and connected with your friends that you've met in the community. We hammer this point home probably in every single episode. I don't know what that phrase means. Hammer this point home.

Erin Hawley:

Nail again?

Lily Newton:

Is that the phrase? Did I just say a bunch of words?

Erin Hawley:

Nails.

Lily Newton:

Hammer this point home. Did I just make up a set of words there?

Erin Hawley:

No. It sounds right.

Lily Newton:

Alright. Well, in every episode, we hammer home, the point of that community is so, so, so important, and this is feeling like proof. I traveling. We're here. We're together right now because our team is meeting for a work. What are we what did we call this?

Erin Hawley:

The big year round at fun times.

Lily Newton:

Yeah. It's like a strategic planning session, which if this was not my team, would be a nightmare for me. The idea of, like, going from being virtual to being in person normally would scare the shit out of me, but we're, like, friends. So I thought it's very easy.

Erin Hawley:

Because having a friend.

Lily Newton:

Yeah. Yeah. It does bring up a good point about, like, again, the benefits of, being able to do things virtually. Because I feel like the way that since we've spent so much time talking through a screen to each other, like, at the beginning, the screen was, like, enough buffer plus, obviously, us being both disabled and, like, knowing that my full identity is seen by you. But, like, I feel like I couldn't mask. Well, I just I just wasn't masking that much, and now I'm getting to see, like, oh, it's cool to be in person unmasked, which is kinda rare for me. Usually, when I'm in person, it kinda shields up.

Erin Hawley:

Yeah. I'm not autistic, but I do mask.

Lily Newton:

For sure.

Erin Hawley:

And I feel like I don't have to. Intro: Yeah.

Erin Hawley:

Hear.

Lily Newton:

Yeah. I feel like you have pretty intense anxiety though, and I think people with anxiety in general mask a lot. Mhmm.

Erin Hawley:

I mean,

Lily Newton:

I think masking is kind of like stimming where it's one of those things that gets like, it it's an autistic trait for sure, but everyone stims and everyone masks.

Erin Hawley:

Yeah.

Lily Newton:

Which does not mean that everyone's a little bit autistic, by the way.

Erin Hawley:

I totally stim.

Lily Newton:

Yeah. Totally. That's been, like, even just sitting here during our, like, planning sessions with our team. I'm like my, like, number one stim is I like to squish things. Like, my partner, I will, like, squish him as we talk. And Yolanda's messaging us from the other room. That's one of our teammates. Yes.

Lily Newton:

She is. What did she say? She sent our notes. And I was, like, sitting during our meeting just, like, squishing my own skin. And then I was like, oh, that might be kinda weird to do Yeah. In a

Erin Hawley:

It is not.

Lily Newton:

Team meeting, but I know none of you guys can.

Erin Hawley:

No. I tend to, like, put my finger in front of my arm behind it.

Lily Newton:

Oh, yeah. You do that.

Erin Hawley:

And then it's like, I can't unsee myself doing that.

Lily Newton:

Yeah.

Erin Hawley:

But I like it to be.

Lily Newton:

I every time I'm watching the videos, I'm going through and, like, editing our podcast. I just did it as I did. I can't stop tucking my hair behind my ears. I do it in every episode 3 or 4 times. Just just can't help it, But I'm wanting to care less about that. We had a really great conversation. Our team, by the way, is all women. It's amazing.

Lily Newton:

Yes. And, actually, our team is all nonwhite women, which is really cool. But I'm the youngest on our team, and we were talking. I I love to hear that because I'm 27. It's the oldest I've ever been. Doesn't feel like a baby. But when I'm talking to you guys, it does in that, like, we were talking earlier about, getting old enough to not care what other people think. And, truly, if you are, like, an insecure mid 20 year old, I think the best thing you can do is befriend a cool, supportive 40 year old.

Lily Newton:

The coolest women need friends in multiple generations. It's very important.

Erin Hawley:

Yes. And you keep me updated on the latest happenings in, like, social media arenas because I tried okay. So I use I use my phone Mhmm. With I just realized found out you can use a mouse on your iPhone. So now I can access my iPhone, and I keep trying to do Instagram stories.

Lily Newton:

Oh, yeah. I've been seeing it. They're fun.

Erin Hawley:

I don't know what I'm doing. Like, I feel like a a a baby doer. I'm like, how does this work?

Lily Newton:

You were playing with the filters the other day.

Erin Hawley:

Yes.

Lily Newton:

And I was like, look at Erin. Get on get on filters. Oh, that's funny. Yeah. You keep me updated on how to accept myself and stop caring about what other people think, and I keep you updated on memes, which is equally as important.

Erin Hawley:

Me and Lambert have have this thing where we say the cutoff from Gen z to millennial is October 1983 because he's very Gen

Lily Newton:

Wait. You mean Gen x?

Erin Hawley:

Gen not Gen z.

Lily Newton:

Gen z.

Erin Hawley:

Because he's he knows all the memes. He knows, like, all the...

Lily Newton:

The eighties is millennial, Erin.

Erin Hawley:

I know. I'm saying

Lily Newton:

But he's got it.

Erin Hawley:

If he jumped out of it.

Lily Newton:

The relating to Gen z.

Erin Hawley:

Yeah. And I'm very millennial.

Lily Newton:

Yeah. You are.

Erin Hawley:

And he's like, how do you let know this random joke mean? I'm like, I don't get it.

Lily Newton:

I sometimes get called a zillenial, which is the those of us who were born between, like, 94 and 2001 because we don't really relate to millennials or or, Gen z. And I saw a really funny tweet that was like, if you're born before 1994, you are a millennial. If you're born after 2001, you're a Gen z. And if you're born in between, you're an honorary member of the Black Eyed Peas. That was what it said. It cracked me up. Super important topics today on the podcast. This just between us segment is is kind of fun because it's we call it a segment, but it's probably its own episode.

Erin Hawley:

Yeah. This one should be. Yeah. Because, like, we're together. We're together, which is fun. Yes.

Lily Newton:

But also our friendship was fully formed virtually.

Erin Hawley:

Mhmm.

Lily Newton:

It's, like, very beautiful to be in person. I'm really, really enjoying it. Same. And it's fun to be able to, like, do our little, like, make eye contact. Wow.

Erin Hawley:

Like, watching you on screen, and, like, your voice is coming from right beside me. So it's weird. But I didn't get, like

Lily Newton:

It's very cool to be in this background. I've seen it so many times, which is fun. But, yeah, we, our friendship wouldn't have been lesser than if we were not ever in person

Erin Hawley:

Yes.

Lily Newton:

Which is important because, I think virtual friendships are pretty crucial in the disability community.

Erin Hawley:

Absolutely. I, as, as a disabled person

Lily Newton:

As we are on this show.

Erin Hawley:

As we are. I don't know what I would do without Internet friends.

Lily Newton:

Yeah.

Erin Hawley:

I don't go to school. I work online, and, like, everyone my age around my local friends and either, you know, moved away or started families. So it's hard to as an adult, to make in person friends.

Lily Newton:

Yeah.

Erin Hawley:

So I definitely value my online friends a lot. Totally.

Lily Newton:

Friends. Totally. Yeah. And, like, we're not necessarily, like, friends with everyone we've interviewed on the podcast, but, like, I think because of this space that we've made and how, like, open it is, there is a level of, like, I feel like I get we get pretty deep. Doesn't feel like the right word, but we get we get into, like, some deep topics with our guests, and it does feel like even though it's, like, through a screen and only an hour of recording, it's like, if I ran into any of our guests on the street, I'd be like, oh my gosh.

Erin Hawley:

Yeah. I feel like our podcast episodes are very authentic and just conversational. Yeah. We're just friends hanging out, and it's it's just been very, nice.

Lily Newton:

I agree. I mean, that's this episode we if you can't tell, we have not scripted this. We just came into it. Yeah. You can see my my tattoos on your screen. I never get to show them in my in my

Erin Hawley:

Nice.

Lily Newton:

This tattoo, I it's, Lily's purple plastic purse. It's my children's book that I was obsessed with my name is Lily and I love myself. But I had an allergic reaction to the blue ink. So you can't you can kinda tell on screen, but it's it's very messed up and scarred right here. And I was the whole reason I got that tattoo was kind of like a inner child healing thing, but also like a kinda, like, screw you to the ableism of people who call me childish, because people call autistic people childish.

Erin Hawley:

It's just a thing.

Lily Newton:

And, and so I was like, well, I do love things from my childhood. I'm gonna get this. And then, you know, it didn't work out like I wanted. Obviously, I had a bad allergic reaction, and I was immediately gonna, like, get it fixed and covered. And then I was like, no. This is part of my self acceptance journey

Erin Hawley:

Yes.

Lily Newton:

Because I love this version of Lily from the book. Even though she's not what all the other Lily's look like. Like

Erin Hawley:

That is great. We think about it.

Lily Newton:

Right? And I was like, well, I can't I can't fix her because I'm in this journey of no longer wanting to fix me. I'm accepting because for so long I wanted to, like, fix my brain. And then, honestly, because of this podcast and the amazing acceptance that the disabled community has shown me, I'm like, oh, I don't wanna fix myself anymore. I want to love and accommodate myself. And that's how I feel about her now. I'm like, I'm not gonna fix you. I'm gonna love you.

Erin Hawley:

We just had a very recent blog written by Liz from Easterseals.

Lily Newton:

Oh, yeah. Yeah. Affiliate. Great blog.

Erin Hawley:

About how she refused to use a prosthetic eye and just kinda rocked her eye as it is. And I think that's really I loved reading that because yeah. It's like you don't have to conform to what nondisabled people might think about you or spectrum you.

Lily Newton:

Yeah. And, like, perfection is, like, actually

Erin Hawley:

Uh-huh.

Lily Newton:

One of those things that is, like, part of the, like, white supremacy, colonial kind of, like, pyramid of what makes that. Mhmm. Like, perfection is a lie. It's not real. There's no perfect. It's just what is and who you are.

Erin Hawley:

Yes.

Lily Newton:

Self acceptance. Yeah. Which, you know, kinda goes into that, like, virtual friendship thing. Like, I think there's a version of me that a long time ago when I didn't know the power of making friends online would have, like, thought that it couldn't be as deep of a connection. But it's like, if this is the only place we can be friends, then we're gonna be friends here.

Erin Hawley:

Right.

Lily Newton:

Through this screen. Totally. Always be friends. Yeah. And I love having you as a virtual friend because it means I can send you Teams messages during meetings.

Erin Hawley:

Yes.

Lily Newton:

That is crucial to surviving having to work a 40 hour work week, which I mean, we don't really need excuses, but we I mean, we work a full work week, but we have amazing hours and stuff. But it's very crucial to find your work friend that you can make eye contact with in a Zoom meeting and know you're making eye that's a skill.

Erin Hawley:

That is a skill.

Lily Newton:

But I know I know when you're looking at me, and I'm like yeah. To find that person, in your work, I recommend being open and disclose your identities so that you can find people who are in similar identity groups to you. And if you're petty, find a petty person. We like to be kinda petty together. It's fun. Yeah. This is us in the same room. Don't get used to it.

Lily Newton:

What should we do? How do we close this? We just shut it off, just camera off. Yeah. It's been 22 minutes. We said we'd record for 20 minutes. This has just been 20 minutes of Willie and Aaron hanging out. Totally. I think it's been a blast.

Erin Hawley:

It's been amazing. Should do it again?

Lily Newton:

Yeah. We're gonna go hang out in person for the rest of the day. Enjoy it. Soak it up. See you next time, when we're at once again, being besties through the screen.

Erin Hawley:

Yes.

Lily Newton:

I don't know how to say it again. I already said it, but that's how I always end it. See you next time on another episode of everything you know about disability is wrong. Bye.

Erin Hawley:

If you liked what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:

Thank you to our listeners. And as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:

And I'll see you next time for 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.