Transcript

Lily:

I'm also very tired. So you know what that gives us? We can be tired and have nuance. I feel like that's a good, this is a good -

Erin:

Yeah.

Lily:

- kind of parameter for these just between us talks. So like, we just hit record for 30 minutes and just talk about a topic, see what we get. Might only be like a 20-minute episode, but I'm cool with that.

Erin:

Me too.

Lily:

Well, welcome viewers. I think we should start this episode with that little ramble intro. This is Just Between Us, which is a new segment of Everything You Know About Disability Is Wrong. You want to tell, you want to explain how this idea for this segment kind of came about?

Erin:

Yeah, so we had a conversation the other day. I'm going to turn off my...

Lily:

My teams is buzzing. There'll be some like little behind the scenes fun too for anyone that listens to these just between us. Cause you'll see like, it's just us. It's just us.

Erin:

Yeah. It was just between us. So the other day we had a conversation about disability pride month and the content that I was seeing a lot of which was about like, this is what ableism is and this is how ableism is bad. And yeah, it is. But to me that didn't feel like pride even though I understand. It's necessary to have those conversations and we just kind of delve into like how that made us feel and then we're just like we should have this conversation on the podcast and so we're going to have a little segment now where we just chat about like a hot topic and that's it.

Lily:

Yeah, so there's no like cadence or schedule of when these will happen. It's just kind of when there's a topic that Erin and I want to talk about just us. Because you know, there's something like cool, I think, for our listeners to get to kind of be a fly on the wall between two people who are both disabled and our friends having these conversations about like nuanced kind of topics. there's a siren going by. It's very loud. I'm not sure if you can hear it. I live in a city and there's something about like getting to hear, you know, this is just two friends who happen to be coworkers that are talking about this kind of topic. Like we don't, we don't claim to have the right answer to anything. but there's just not a lot of spaces to have these conversations. My team's notifications won't stop today.

Erin:

Mm hmm.

Lily:

Yeah, I hear it, here it goes.

Erin:

Okay.

Lily:

Because I have an away message set so I can't go on do not disturb

Erin:

I don't know.

Lily:

Wait, yeah I can. Okay. Yeah, so we were just like, wanted to have this. I don't know, you know, sometimes there's hot button issues we want to talk about. But, just between us, Disability Pride Month.

Erin:

Mm hmm. Yeah.

Lily:

Here's what I said to Erin at the beginning of that conversation. I was talking about how, for me, I...

I became, I started accepting and finding pride in both my queer identity and my disabled identity at the same time. You know, when I found out I was autistic, kind of did a deep dive in my brain, that is when I started to fully understand like, I am queer as well. I want to know myself fully and not just.

You know what I think I am. And so anyway, all that's to say that I I'm very interested in, you know, we have LGBTQ plus pride followed by disability pride. I was an outsider on both until I felt like an insider on both claimed my own pride. And it's, it's very different because of what Erin was saying that like the content that you find in disability pride month does seem to be kind of centered around ableism. And so my thought of course was, well, yeah, I think it'd be a little odd if LGBTQ Pride Month was a bunch of content about homophobia, which obviously there is content about homophobia in Pride Month. You know, we know that these both, both Pride Months started as protests and changing policies and, you got to talk about the systemic injustice that got us to need pride. But it's interesting because...do you think it's because ableism doesn't get a stage any other time?

Erin:

I think that disability in general doesn't. But I also feel like... everything turns off. so disability pride to me is about celebrating ourselves and accepting ourselves and not having to educate constantly. Can you hear my family in the background? It's fine.

Lily:

Yeah. The just between us segments are going to be real authentic. My hair is greasy. Go ahead.

Erin:

We're authentic. And I understand the need to educate. I understand the need to, you know, talk about things that are very important to us and affect our lives. But I just want a month where we're not having to educate. And we're not having to... delve deep into like the shitty part of being disabled in an ableist society. I don't want to be dumb, but I can just be like, fuck yes, I'm disabled and I love it. You know what I'm saying? I love my community. I love, you know, having this way of life as a disabled person has a lot of positives for me. Negatives, but like that to me pride is sitting in that celebration of myself and my community.

Lily:

Yeah. I mean, I think like even just hearing that just sitting here, it's like, yeah, we don't have a lot of spaces where you get to just be like, yeah, here's the good parts. And we've talked about that on in other episodes of that, like, I think we talked about it with Spencer West. I can't remember. I'm sure it's come up a lot, but that feeling of that, like when you are disabled, there is...Sorry, I turned my table. When you are disabled, there is a sort of...like sort of forced advocacy that you just, just, you have to advocate for yourself in general. and so that like, yeah, teaching aspect where it's like, I just want a month where I don't have to like explain my experience. And, and I, yeah, I think, but I think at the same time, I'm bringing it back to my thoughts on if we centered homophobia during LGBTQ pride month, right?

The thing is that I think that...

Homophobia is a little bit more obvious and sometimes, well, in any, most forms of bigotry, racism, misogyny, homophobia, sexism, those kinds of things. I think a lot of people still don't understand necessarily that those are all rooted in ableism. Like ableism is the through line.

Erin:

Mm -hmm.

Lily:

Bad stuff, ableism's the through line. Like it's, and it really like is life changing actually, when you start to see that like, this is ableism and you can start to point it out. But until you have that kind of ableism spotting muscle to work, I think there are still a lot of people going around that don't see ableism as the systemic problem that it is.

Erin:

Yeah, absolutely.

Lily:

And so, so there's kind of this like thought of, okay, Pride Month is, Disability Pride Month is the only time that we have this stage. So we have to use this time to educate on ableism. But that is a pretty like, for the non -disabled community to understand approach. And I think what you're talking about is a very like, from within our community, what can pride look like?

Erin:

Yeah, and it's not lost on me the irony of having this conversation about ableism. About not talking about ableism, but whatever.

Lily:

That's why it's a nuanced topic. That's why it deserves it. That's why it deserves it. Just between us segment.

Erin:

Yeah. Right, and I don't get pissed off at people, but I'm just kind of like, why? Like save it for August.

Lily:

Yeah. Yeah, you know, yeah, that's a really good point because I think that the kind of devil's advocate role I'm playing here and being like, well, you have to talk about ableism because it's the only time you talk about disability. You just pointed out the answer there that was like, if you have to talk about ableism because July is the only time you talk about disability at all, maybe that's the issue.

Erin:

I'm sorry. Right. Yeah.

Lily:

Maybe you just make space in August to also talk about disability and ableism. So then July can be about pride.

Erin:

Yeah, the ones that I've been seeing are by people who post disability content all year. So I'm just kinda like... Alright. Why now?

Lily:

Do you think that there's a part of like...like this like culture of not wanting to take up too much space, of like a fear to be openly prideful in a disabled identity.

Erin:

I'm sure that's part of it, yeah. Like, they're kind of producing content they know... well, kind of related to what you said, but more like... you know the algorithm loves this. Like, having strong statements like, it wasn't bad, but, you know, more detailed. But that is, I think, another issue.

Lily:

Mm -hmm. Right.

Erin:

It's how the algorithm rewards certain type of content which is fine you gotta work the algorithm you gotta make your cash you know like I don't know

Lily:

Mm -hmm. For sure. Yeah, we're not trying to stop anyone from getting their back. And again, we're not scolding anyone for posting anything. It's just an interesting topic to dive into just between us. Because like...

Erin:

No. No.

Lily:

Yeah, you think about... like producing that content that the algorithm likes, but then also the layer of sometimes it's hard to share disability pride because I think of like the effects of like Twitter replies where it seems like to say anything online, you have to like, but here's a caveat and here's some nuance and here's that I understand that I'm not making a full blanket statement. I'm just talking about this one personal experience like you are.

And I feel like disabled people have to, we take on a burden of that often. Like if there's many episodes where you listen and someone of you, I, or the guest is like, well, and I think this just from my experience, I'm just talking about me. This is just me because there is a sort of like fear of the reactionary comments. So like even saying something like, I think you at the beginning of when we were talking, just said like, I love being disabled.

Erin:

Yeah.

Lily:

I mean, it's not always great. Like it feels like there has to be that caveat because because we are still fighting for so much basic stuff as disabled people. It feels hard to take up space and be like, well, here's what's great about being disabled because I want policymakers and like people who are out there making changes to see that like it's not great. We need more support. But at the same time.

Erin:

Yeah. Yeah. Mm -hmm.

Lily:

There are parts of it that are great and July should be able to share that. So maybe, so yeah, Len, what parts of your disability or your disabled life do you love, Erin? Or take big pride in?

Erin:

Right. I love how it has shaped my personality and it has shaped how strong I have to be. I know that sounds like inspiration for me, but the stuff I have to deal with like every day, you gotta have like some kind of strength to like not let it...

Lily:

Whatever. This is just between us. Mm -hmm.

Erin:

...shut you down. And it's not just my inner strength, it's like my family support. I've had a lot of solid support my whole life that a lot of people don't have. But that I think is amazing. And also the people that I've met is like what's really amazing about it. And how --

Lily:

Absolutely.

Erin:

I remember having a conversation with my friend Monique and she said to me, what I love about my disability is that I can go into the room and instantly get everyone's attention without doing a thing. And I'm like, I love that you love that, but I'm such an introvert and I'm like, no, leave me alone. But like, I get what she's saying. So I do agree, like, in some ways it does give me that attention that I might not have otherwise, if that makes sense.

Lily:

Yeah, I think attention, but also what you bring up of community. Like there's that level of like...meeting cool people and having that shared experience that you don't necessarily have. And I think you and I, especially as white passing people from non white families, there is a certain level, I don't know if you've experienced this, but I experience often where like, I'll be talking to someone who is clearly Indian, they're talking to me, they don't necessarily realize that I'm Indian, and I'll kind of slip into conversation.

Erin:

Yeah.

Lily:

I'm Indian and there's this moment where like something happens and it's like, cool kin. Like there's something there. And I feel like that also exists within the disability community, especially if you have an outwardly apparent disability. There's that level of like you walk into a room, see someone and they're like, brethren, let's go. And I've certainly felt that on this podcast, that level of like, what were you gonna say?

Erin:

Yeah. Yeah. Yeah, absolutely. I love what you said about like someone not realizing you're Indian and then the Jewish is, my God. Cause I did an interview last week with an Easterseals participant and they were talking about how they have, they love to cook and their favorite thing to cook is Cuban food. And he's telling me all the dishes and the guy helping him is like, Do you need to write that down for you? Do you know what that is? I'm like, yes. I'm cheating. I eat it all the time. I just love those moments. I don't know.

Lily:

Yeah, there is some, that's like the best about intersecting identities is the understate. Like, I don't know. I feel like my understanding of disability is heavily influenced from my, through my understanding of like race and through my understanding of sexuality. Like these, and most of that is through like how community operates because like, yeah, in the disability space, there's, there's both like what is apparent and what is not apparent. So then there's like, who has to disclose, who doesn't. And then in like queer spaces, it's all about disclosure. But then when it comes to like race, it's often very apparent what people are, unless they're like you and I, who look quite ambiguous. No point to be made there, just coolness, just cool thoughts of the way that these things intersect. And it's interesting being in the time of like Black History Month, AAPI Month...

Erin:

Lily:

...LGBTQ Pride Month, Disability Pride Month. Like it's an interesting time to be alive and recognize your identities. And, you know, ultimately these months like are wonderful, but they are like a, you know, they're there because of a need, because of a lack of something, whether that's rights or acceptance or representation.

Erin:

Yeah. Right. Exactly. And I would love to get to the point where, like, by celebrating Pride for the entire month of July, July, yes, that the other months, like, it helps bring disability into the other months, where you can just continue that conversation rather than like, July 31st, we're done, shut the door, you know what I'm saying?

Lily:

Yeah.

Erin:

It's a very good name.

Lily:

Yeah, absolutely. I love the, we'll make a clip of us being like, knock, knock, still disabled, and then posted on August 1st. Still disabled.

Erin:

Yes, let's do it. Still this enabled every day.

Lily:

Not going anywhere. But some people are disabled for small periods of time. Not Erin and I though, we're locked in for life.

Erin:

Yeah. The save of your life. Definitely add tattoos.

Lily:

I love that. Erin and I want to get matching tattoos team. This is what being disabled does. It turns coworkers into lifelong best friends that you are going to get matching tattoos with. And that's some disability pride right there.

Erin:

Let me get it. Yes.

Lily:

I'm exercising disability pride, especially in my household this month by like actively trying to do things that make my life easier. So like, I have a really hard time with the order of operations of routines, like, the whole like the fact that when you go to bed you gotta like wash your face and brush your teeth and put on pajamas and If you want a snack, you know, you got to eat the snack before you brush your teeth like there's just a lot of steps that makes my brain kind of get nervous and so I Just wrote it all out taped it on my wall now. I just follow it and I realized that I did stuff like that when I was a kid and then I there's a lot of things about...

Erin:

Mm -hmm. That's good.

Lily:

...like autism accommodation that get labeled as like things you do for autistic kids. But if they help autistic kids, they also help autistic adults, just to be clear. It's actually just the ableism that makes us see it as childlike when really it's actually just an autism accommodation. But yeah, that's been helpful for me and I'm celebrating Disability Pride by being proud of it.

Erin:

What else do you like about being an assistant?

Lily:

My gosh, wait, also I'll get into that, but I'm, this is listeners. I, at the end of June, got officially diagnosed with EDS. I know I've been, if you've been following along for a while, I've, I've referenced it in quite a few episodes that I think I am, or that I have an appointment. It's kind of one of those a little bit longer processes to get that diagnosis. but I saw a rheumatologist, he was like, yeah, this is very obvious. You have EDS. I have hypermobile EDS, which is often written out as H EDS. So I've just been calling it HEADS. And there's a lot of crossover between people who have autism and people who have HEADS. So I wonder if in my lifetime we'll see some research that explains that. But, but double disability now.

Erin:

Yeah.

Lily:

Fully in it, mentally and physical, let's go. And I was actually on a walk the other day and my hip kind of gave out, which it tends to do, EDS affects your joints. And I realized that I am in honor of Disability Pride Month. I honored it and was like, I think I might need to consider mobility aids.

Erin:

Nice.

Lily:

Figuring out what I do when I'm in pain instead of just pushing through it.

Erin:

You totally rocked like a king. Yes.

Lily:

I'd bedazzle it. I have a whole thing of rhinestones in there. And I was thinking there's gotta be something that I could have in my, like, I'm sure it exists, like a cane that could like fold up and go into my purse and I could just take it out when I need it.

I've been thinking about that. I've been thinking about actually accommodating my pain instead of just pushing through it, which is a big step. And I hope that there's someone listening to this that's like, man, maybe I should accommodate myself and do it.

Erin:

Yeah, it's yes, it's people think of mobility aids as, you know, something that's prohibiting you from doing things, but it's the total opposite. It's life -changing and freeing. Yeah, I think so.

Lily:

Absolutely. And like that was it. I was like, I was like punishing myself, not giving myself the help I needed. And then also like, you know, couldn't keep up with the people I was walking with. And it's like, you know, once I free myself from the like mind of not thinking that I deserve or should use this mobility aid, I'm like, well, that'd be great. It would actually allow me to do the walks I want to do. And like, I think that

Erin:

Mm -hmm.

Lily:

Yeah, that's a good point. If you want to address ableism during Disability Pride Month, that's one that I wish we could talk about of the way that like having to use or what's the confined to a wheelchair, confined to a chair or living with their disability, similar use, but the like forced to use a mobility aid narrative when really mobility aids are so wonderful.

Erin:

Defined. Yeah.

Erin:

Yes.

Lily:

It's like I was in pain, now I'm not. I couldn't move, now I can. These are great things.

Erin:

Hmm. Mm -hmm. When I was first diagnosed at like eight years old, my mother was like carrying me around until I was three years old. And my abuela was like, you need to get her a chair. Just get her a chair, get over it, and it's fine. So my mom got me a chair, and that was it. And it was like...

Why did I wait so long to do this? Because, I don't know. I think she was just like, in denial or whatever. But now she's like, yeah, that was silly. I should've just gotten the chair. You know?

Lily:

Yeah. And that's, I think maybe full circle of like why disability pride month is so important because maybe if your mom had seen more examples of people being like, I love my chair. I love my cane. I love this thing that helps my body do what it needs. Then, maybe it wouldn't be so scary. And I hope that that's...

Erin:

Mm -hmm.

Lily:

...you know, the result of disability becoming more mainstream. It's always been here, so it feels silly to say it like that, but yeah, I think that that's an important part of Pride is allowing space to see the innovations and the things that help us as disabled people.

Erin:

Yeah. And I think even just showing pride is inherently combating ableism without even finding it out. Just having that pride and showing it is enough, I think. Thank you, July.

Lily:

For sure. I think that's absolutely true and...you know, ableism is a systemic thing. So like, you know, there's not a way to be like, I'm not ableist. You can be anti -ableist much like with racism and massage, all these things that are systemic, like you have to be anti them. And there's a lot of internalized stuff going on. So just waking up and being like, I'm proud. I'm here today and I'm proud of who I am is already fighting ableism a bit.

Erin:

Absolutely.

Lily:

We're nine days into Pride Month as we're recording this. I'm not sure when it'll come out, maybe later this month, but has there been anything really great that you've seen Pride Month celebration -wise?

Erin:

No. I, well besides, I'm trying to think like beyond Easter Seals. yeah, just general posts and I do see a lot of great content from advocates, that have been on this podcast. There's a great video of Lachi. Have you seen it? Yes.

Lily:

Neither. Yeah. My God, when they're all walking? Yes. Lachi is so cool. Anytime she posts, I'm like, I can't believe we had her on our podcast. I think she just posted about her board position on the Grammys again. She's so cool. Yeah, I saw that post. That was awesome.

Erin:

That was amazing. I know. She's fantastic. Mm -hmm.

Lily:

That was a good one. I, I want to see more disabled friend groups walk in like the bad bitches that we are. yeah. listeners. I don't know if this will be out before, but Erin and I are going to see each other in person. I'm going to New Jersey. Sorry. I just doxxed you.

Erin:

That's what I think. Yes you can do a video...

No. It's good.

Lily:

Maybe we can take some fun videos sharing our pride. We're going to get some pictures together. So we'll finally have photos to market this incredible podcast with.

Erin:

Mm -hmm. Yes.

Lily:

That's going to be so great. I can't believe we're seeing each other during Disability Pride Month. How incredible. Absolute magic. That's a great way to celebrate disabled pride. Visit your disabled friends or if you can't be in person right now for the many variety of reasons, host like a hangout. Just there's... you can feel pride by yourself, for sure. I don't want to say like that's not possible, but I know magic.

Erin:

Yeah.

Lily:

When you look around and see your cool disabled friends, it's like, well, now I have pride, for sure.

Erin:

Absolutely, for sure. Thank you for having us.

Lily:

Happy Pride Month everyone. This has been the first edition of Just Between Us where Erin and I have a conversation just between us. We'll see you next time for another episode. Wow, my Southern Illinois just popped out. We'll see you for another episode. We'll see you listeners for another episode of everything you know about disabilities wrong next time.

Erin:

Bye.