Transcript

Lily Newton:

Hey, listeners. Welcome to another episode of Everything You Know About Disability is Wrong.

Erin Hawley:

And on today's podcast, we have Chelsea Bear.

Lily Newton:

Chelsea Bear is a full time content creator based in Florida who shares her experiences of life on social media with the handle at real Chelsea Bear. She loves to travel, spend time with her loved ones, attend concerts, cook, and so much more. She shares about her experiences of having cerebral palsy on social media with educational, fun, and lighthearted posts that strive to create acceptance and awareness for people with disabilities.

Erin Hawley:

She earned her bachelor's degree in communication with a specialization in public relations from Florida Gulf Coast University in 2015, and she worked in public relations for over 7 years until transitioning to a career in social media.

Lily Newton:

Welcome to the podcast, Chelsea. We're so excited to have you.

Chelsea Bear:

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

Erin Hawley:

Before we get started, we're gonna do some audio descriptions for our blind or low vision listeners. So I'm Erin, and I have red hair, blue eyes, and I'm wearing a red long sleeve shirt.

Lily Newton:

This is Lily speaking. I am a white presenting multiracial person. I am 27 years old, and I have brown hair and green eyes. Depending on what the cut of the camera is, you can see that I have a bookshelf behind me, with a lot of awesome disability literature and a bunch of stim toys on it. I'm wearing my usual black turtleneck, but it's a little cold in my apartment today. So I'm wearing a gray Easterseals branded sweatshirt because I love to rep the brand. And throughout the episode, I'll probably play with 1 of my stim toys as we talk, which is a blue and green snake like toy today. Chelsea, you wanna go ahead and give your description?

Chelsea Bear:

Yeah. Definitely. So this is Chelsea speaking. I'm a white woman with dark brown hair. My eyes are also dark brown, and I'm wearing a maroon long sleeve shirt. And then depending on the cut, I'm in an office setting with my mobility scooter behind me. I'm sitting in a black chair and just in kind of a an office room.

Lily Newton:

Awesome. Thanks so much. Well, let's get into the interview portion.

Erin Hawley:

So before we start really getting into the interview, we'd like to ask all of our guests, since since the name of our podcast is everything you know about disability is wrong, What do people get wrong about you and your disability?

Chelsea Bear:

That is a great question to start off with. I think for me, and, you know, hopefully, everyone listening is gonna be on the the same track and way of thinking as me. But with a physical disability, I think my whole life, I always get people assuming that I can't do certain things intellectually, or, you know, go to school, have a career, do just live life, travel, have these experiences. So I think a lot of the time I find myself having to prove, I guess, which I, again, everyone in this room understands what that's like. But that is normally the first thing is just dealing with those assumptions people may have about me based on the way that I walk.

Lily Newton:

Yeah. I feel like that is the kind of recurring whether it's some when we're talking about physical disabilities, intellectual, developmental, anything. It's just we're always battling assumptions. And

Chelsea Bear:

Yeah. Yeah. That's the the main way to to say it. Break it down.

Lily Newton:

Yeah. And, you know, maybe that's, like, part of the human experience in general and, like, many intersectional identities, but, I think you do a really great job on your social media of, like, not necessarily breaking assumptions and making it all about the assumption, but just being a cool lifestyle influencer. And, like, I think that in itself probably changes a lot of people's assumptions. Yeah. I've been following you for quite a long time.

Chelsea Bear:

Yeah.

Erin Hawley:

I've been following you for quite a long time, and I just love, like, how open you are without falling into, like, this inspirational framework in your content, which I think is really important, for people to, like, understand that we're not here to be inspirational. We're just living our lives.

Chelsea Bear:

Yeah. Well, first of all, thank you. And I I agree. I think there is a very fine line there that I try to stay more on the side of education and just sharing the realness of my life. And, of course, some people take that as inspirational and not saying people with disabilities can't be inspirational, but I don't ever want my content to just be, you know, inspiration porn where I'm showing, like, oh, I'm so amazing because I'm going to the grocery store. I'm just like, nope. This is what it's like going to the grocery store. I have to do these things, but it doesn't make me, you know, this big inspirational person.

So, yeah, it's it's a it's a fine line, but I always try to to shift it in that way.

Erin Hawley:

Yeah. I, go ahead, Lily.

Lily Newton:

Yeah. I was just gonna say in in in, like, the world today where influencing is, like, you know, a full career that lots of people have, it it's, like, interesting because there are tons of influencers, disabled and nondisabled, who, like, that's kind of the point is to show what you do in everyday life. So there is, like it's if if anyone, you know, is like, oh, this is inspirational, it's like, well, I mean, there's lots of nondisabled influencers that are going to the grocery store and being like, come with me to Trader Joe's. So, like, why is that?

Chelsea Bear:

Yeah. Exact exactly. And, I mean, a lot of my content at the beginning started going viral just showing how I walk.

Erin Hawley:

Mhmm.

Chelsea Bear:

And I've get a lot of negative comments about that sometimes because I walk the way that I do. And to me, when you look at a regular, let's say, like, fashion influencer, they're always just showing them walking in different outfits, and and that's not controversial. So I think, it's just interesting the way it can be perceived sometimes just because I do have that disability component in it too.

Lily Newton:

Yeah. Absolutely. And with the, like, negative comments, I feel like that leads perfectly into, Erin, the question. Are you gonna you can go ahead and take it away.

Erin Hawley:

Yeah. Sure. So as we mentioned in your bio, you started out with a career in, PR before switching to social media. So after working there for 7 years in PR, You must really know, like, the ins and outs of social media, the negatives, the positives. But how did you prepare yourself for this career in social media, and what has it been like jumping into that?

Chelsea Bear:

That is a great question. I always believe that my career in public relations helped me for this. And while everything I did in PR was more media facing and trying to get my clients in different news outlets and stories and stuff, it really helped me learn about how brands work, you know, what's important to brands, their specific values, their specific talking points, and all of those things that now translate into my content when I am working with brands or just sharing my own personal life and the things that I do. I think it definitely prepared me to have which I think I've always naturally had, but just a brain that works in communication first. I've always that was an interesting way to say it. But I I just always have, really loved communication and writing and having to do it through the the lens of a brand for so long. It was actually pretty refreshing to translate it back to myself once my social media started, you know, growing the way that it did unexpectedly, but I think because my platform did grow from such a genuine unexpected place, you know, having the background I did in communication now that I was kind of my own client and I could apply everything I've learned with media, coaching my clients and all that. Now I'm the 1 just doing it for myself, which was kind of refreshing in a way because I don't need to follow the handbook of a certain brand or their talking points.

I'm like, no. These are the talking points that are most important to me. They're genuine. I came up with them myself, and I don't need to, you know, train someone else on it because it's just me and who I am. So it's been really helpful in all aspects, especially content creationist storytelling. And, of course, if you're doing it from a brand, that's you're trying to sell something. I'm not trying to sell something. I'm just telling my lived experiences.

So it's just been kind of overlapping in the way of the skills I learned. I've been easily able to apply to this kind of new career that now I've been doing for a couple years.

Lily Newton:

That's awesome. I'm interested. So you said that it was not expected. So you didn't, like, decide to make the shift into social media. Was was there, like, a certain post that took off, or was it just, like, over time growth and then you were like, I think I could do something with this?

Chelsea Bear:

There I definitely got to a point where I was managing social my social media and my job in PR at the same time. I think beef so before the pandemic, I had already kind of started a blog on the side where I was writing about things I was going through. And then I'd kinda just post on my personal Instagram a picture and be like, hey, friends. I I just posted a blog if you wanna read it. And I was doing that kind of on and off for a couple months. Then when the pandemic hit, I'm very grateful I didn't lose my job. But, of course, you know, nights, weekends, I was just at home. I wasn't traveling.

I wasn't meeting up with family and friends. So then I started putting more time into creating social content. But, again, it, like, really wasn't ever intentional of growing. It was kind of just like, I'm going through some things, and I wanna talk about it because I never really talked about it with people in my life, which is really interesting now that given it's it's really all I talk about on my my platforms. And then once in 2020, Instagram reels came out, and I posted a video of myself walking, which was a really big decision for me. But I had been doing so many written descriptions or written blog posts or captions describing how I walked, and I was starting to attract just a couple more people to my platform. And I felt like I was giving a disservice by not just sharing a video, you know, just to relate with other people so they can understand what I'm writing with that visual component. And then that video blew up.

And then I just started posting more and more, you know, linking back to different topics that I just felt other people thought were uncomfortable. And I'm like, it's just part of my life. Like you know? And then those videos just started going viral, viral. And then I had this platform, and I kinda had to decide between the 2. And I was so passionate about the conversations I was having on social media that it just made sense for me to give it a try and and see what I can do with it.

Lily Newton:

So awesome. I'm so glad that you, like, decided to do that because it it honestly makes makes a ton of sense, like, knowing your content that it did come kind of organically and authentically. I think that's why it's like successful and you're fun to watch videos of because it's clear that like, you're just sharing what you want to talk about. And I feel like content is better when the people who are making it want to make it. You know, that's why we like making this podcast because it's like we want to have these conversations. It's fine.

Chelsea Bear:

Oh, exact exactly. And whenever people ask me, you know, my advice for being an influencer, I I always the first thing I gravitate towards is, you know, why are you doing it? Like, do you have a purpose? Are you proud of the work you're putting out for yourself and no 1 else? Because other people are gonna take it however they want. But if you're putting stuff out that you're proud of and wanna get out, it's you're not gonna get burned out by it. You know, you're gonna be you're gonna continue to light up creating versus doing it just to do it. So I always try to to keep that for myself too so I don't lose that in my platform either. So

Erin Hawley:

And I think having someone having someone with a disability having their own platform is very powerful because it gives you agency in telling your own story. And, like, you're not, you know, you're in control, and you do what you want. And that's really there's a lot of, like, outside lenses into disability that are just really patronizing, infantilizing, all those words. But, you know, what you're doing is powerful, and it is educate it is educating people. And that's very important because you want people to learn about disability from somebody who has a disability, not like, you know, every ending story on CNN or something.

Chelsea Bear:

Yeah. Couldn't agree more.

Lily Newton:

So you are a lifestyle influencer, and you obviously share your own specific experiences. 1 thing we talk about on this podcast a lot is the way that, as people with disabilities, there is almost a like, we're almost kind of forced to become advocates because of an inaccessible world and having to, like, explain who we are and what we need. And I think we had talked about this with you when we talked before this call. Like, there can be a pressure to kind of have the answers of, like, how to fix the world and how to make it accessible. Do you feel those kind of pressures, to, like, have the answers or to be specifically a disability advocate? And how do you, like, keep your content true to yourself instead of just, like, what pressure thinks it should be?

Chelsea Bear:

Yeah. No. I I definitely feel that. And, again, it's it's kind of a very fine line where with my content, sometimes there's things I'm just telling a story of what happened to me, and a lot of people will expect me to end the video with the solution or know the answers of what systemic changes need to be done for something as simple as, you know, I post all kinds of things. Let's say accessible transportation is 1 of them or flying. You know? I just had an experience where I was almost denied getting on a a plane because of my scooter, and I am gonna make a video about it. And, you know, of course, I there's a few solutions I can think of, you know, train your staff better. But I think me as just a consumer and individual flying, I'm not gonna take down an entire airline for I'm not gonna take down an entire airline for it.

And, you know, and that may be 1AA larger example. But I think for me, I I try to be very honest about how I'm learning on this journey just like everybody else. And while I've learned a lot, 1, from my own lived experience that I'm always learning from, I've learned a lot from other people. I try to follow disability news and and all of that, but at the end of the day, I'm still a regular person that is not in Washington DC advocating. I would love to 1 day. And, you know, there's definitely some issues I am more passionate about than others. And it's you know, it it would be ideal for me because that is the the those are issues that impact my day to day. But most of the time, doing things like going to a grocery store, like we said earlier, and let's say I'm accused of not being disabled to use the the shopping or, you know, the the mobility scooter, things like that, if I'm just telling a story, sometimes it's important for me just to spread that awareness.

Just so if another employee is in that kind of situation, they realize, okay. Like, let me not treat someone that way, and it's not this major overhaul of the way things are. So, yeah, there there's definitely a fine line. I try not to be complainy about it, but I get, comments all the time of people. You know, well, what would you do in this situation and and all of that. So well, I appreciate it. It it is a lot of pressure for someone who is just someone living life. You know?

Erin Hawley:

Yeah. Absolutely. I think a lot of people get wrong about disability is, like, we have we're experts in our own lives. We're experts about our specific experiences, but that doesn't mean we have all the answers. We're not some of us are. But most of us are not, like, engineers. You know? So it's like you can't have all the answers. That's why we have to have everyone helping us.

Chelsea Bear:

Yeah. Exactly. And I know I used the example for travel earlier, but there's so many different categories of life that I experience that we all do. So that that's such a great point. Like, we can't be experts at everything. We can share what we need and just hope it's supported and reciprocated on the other end. But, yeah, that's that's a great great way to put it. Yeah.

Erin Hawley:

Did you okay. Check this out, but did y'all hear my phone ringing in the background?

Lily Newton:

Yeah. But it didn't, like, overshadow you talking. It might be in the episode, but it's fine. We we live in we live in real homes. Things happen. Honestly, maybe we'll leave this in.

Erin Hawley:

Yes.

Lily Newton:

This is authenticity. Yeah. No. I think that I just, like, appreciate what you say, Erin, about, like, the you know, we're experts in our experience, and sometimes it can seem like you because you have a certain disability, you're, like, an expert in that whole disability, which kind of leads perfectly into 1 of the questions I have for you, Chelsea, that, I watched a video of yours where you were talking about the fact that CP, like autism, which I didn't actually know this, but is a spectrum illness and is a brain injury so that it affects different people differently. So in the video that we're you were talking about, like, not comparing and that there's no need to be, like, disabled enough. And I've certainly felt that with being autistic, like, having almost imposter syndrome in my own identity, which seems a little, like, silly to say, but is how I feel. So have you ever felt that, and how do you, like, deal with that slash what do you have to say to people who are dealing with that?

Chelsea Bear:

Yeah. Definitely, I deal with that even today. And I think, as you said, CP is so different from person to person, and I always try to make that very clear on my platform too. If there's any new parents with a child with CP, I don't want them to look at my stuff and be like, oh, why is my kid not doing this or that? I I want it to be very clear. Can be very more different, whether more mild or more severe. I feel like I'm somewhere in the middle, but I used to feel like, oh, I'm not disabled enough because I'm not using a wheelchair every single day or, you know, or before just, oh, I could still walk. I'm not disabled enough. I don't feel like I maybe belong in a community, which, of course, now I feel so silly about and feel so differently about.

But I think now my view on the entire topic is you are entitled to feel how you feel. And no matter which way your disability impacts you, whether it's mildly or severely, it's still part of you and your experience. And, you know, I think there's so many quotes out there. Just because the person next to you is having a worse day than you, it doesn't take away your bad day. So I think it's just accepting that your disability is what it is no matter the level and knowing that you still deserve to feel the way you feel about it, and you still deserve to have the accommodations you need even if the next person may need a little bit more or less accommodations. So, basically, all in all, your disability is valid no matter where it kind of ends up, and that's that's definitely how I feel about myself now too.

Lily Newton:

Yeah. I thank you for saying all of that. I think that's, like, really important for people to hear, and I I think that sometimes people think that there's, like, not enough space in the disability community. Like, there are people you're gonna take up too much space. And, like, I've talked to friends who have are dealing with different health things and, you know, are almost afraid to use the word disability, not not from the lens of, like, thinking that disability is a bad thing, but from the lens of, like, well, I don't wanna say I have a disability when there's people who have it so much worse. Like, I don't wanna take up space. And, like, just going off of everything Chelsea just said, I just want to add that, like. We're not going to run out of room.

Lily Newton:

Like, it's in a way.

Chelsea Bear:

There's. Join the club. Yeah. Join the club. Join the party.

Lily Newton:

We need members like and, we need vocal members. And like, I often think about, like, people who use glasses or contacts, and that's like, you know, people would not consider that in the realm of disability for some reason. Or I think about, like, how how many adults struggle with, like, knee pain or back pain and are dealing with these things but are afraid to use the word disability. And III know for me, like, when I struggled with mental health stuff, I wouldn't use the word disability, until I got my autism diagnosis. Incredible, welcoming community, and we're all, like, because it's an incredible welcoming community, and we're all, like, trying to make the world more accessible for everyone. Accessibility genuinely benefits everybody, so the more people we have working towards it, it's it's certainly not a problem. And, like, even if you just need to wear eyeglasses, you understand that you have this adaptive thing that helps you live life. So

Erin Hawley:

Yeah.

Lily Newton:

Join in the fight for everyone to get their needs met.

Chelsea Bear:

A 1000%. And I think it's it's kind of liberating in a way too because then once you kind of accept it, you can dive into that part of your identity or the way it impacts your life. And you could choose to learn about it. You could choose to not, but at least you have those, let's say, answers. And then you can go immerse yourself into the into the community and meet people that are going through similar things as you. And that just is so validating in itself because you realize you're not alone going through this thing. And then you also just have the realization that it's okay to ask for accommodations, and it's okay to ask for help, which I think a lot of people struggle with in itself, which I I do too. But the more I accept all of my CP and the things that come with it, the more I'm able to focus on, okay.

Like, I can get help in this way, and it will just help me live life a little easier.

Lily Newton:

Yeah. Absolutely. That's totally agree. And I think I I really hope that there's some listener who's listening and is like, okay. I think I'm gonna accept my identity.

Chelsea Bear:

Me too. Me too.

Lily Newton:

Because, yeah, we're a cool community for real.

Erin Hawley:

Like, we're a blast. So, Lily, did you wanna talk about, disability pride in them?

Lily Newton:

Yeah. I was gonna say we're on identity. We might as well transition perfectly into this. Listeners, this is a special episode. If by the time you are listening to this, it will be July, which is disability pride month, which is a very exciting time to you all of our disabled listeners. Happy disability pride month. And Chelsea, we're super excited to have you as our 1 of our special guests for the month because I think you do such an incredible job with, like, showing disability in a way that does make like, me it makes me feel pride for sure. Just a little side note that I wanna share.

Chelsea, you came and spoke with Easterseals. I think it was, like, a year and a half, maybe 2 years ago, and it was when I had just started working at Easterseals. And you spoke to us at, like, an all staff meeting, and it was that talk that you gave that made me decide that I wanted to disclose with the rest of the staff that I was autistic. And I had Oh my gosh. You're gonna make me cry. I hadn't said anything yet, and I it was that talk. You were just so, like, bright, and you had a personality outside of being disabled and intertwined with being disabled, and it was just so incredible. So you were a big part of my own disability pride journey.

So just wanted to share that with you and say thank you for being you because it was a big thank you for being me.

Chelsea Bear:

Well, thank you so much for sharing that with me. I can't tell you, like, how happy that makes me feel, especially because I used to work in the corporate world and, you know, used to work in different organizations. And that version of myself back then, I didn't speak up and say the things that I needed, which obviously now I would would never do. But to that that just made my day. So thank you for sharing. And I I think it's it's so important for people to recognize that it's okay, and also it's equally important to make sure the the companies are able to accommodate and accept and stuff. But but, yeah, thank you. That that that's awesome to hear.

Lily Newton:

Yay. I'm so glad. So then diving into it, what does disability pride mean to you?

Chelsea Bear:

I think it's, we kinda touched on it a little earlier, but mainly just accepting yourself and all the things that come with it. You know, I think disability has shown me, the more I've dived into this community, how beautiful it can be and connect you with people who do have those shared experiences and maybe navigate life a little bit differently, but it does not take away the value or quality of life whatsoever. And I think I used to always feel the need to not necessarily fight against it, but to prove to other people that, oh, I have a disability, but I could still x, y do x, y, and z. Where now, that I'm accepting of everything and I have leaned into this identity with CP, you know, it's it's not proving it to other people. It's just like, yeah, I have CP, and I do these things. And I make it happen just like so many other people with disabilities make it happen in their communities that support them. So I think it's just accepting that part of yourself, not being ashamed of it, tapping into your people whether they have a disability or not to feel empowered to talk about the things that go on in your day to day and just owning it, I think, is a a big part of it. There's no need to hide.

Erin Hawley:

I love that. Totally. A 100%.

Lily Newton:

And there's something in, like, owning it that is, like like pride kind of you know, it's it's okay if you don't necessarily feel the pride right away. Like, it's owning it can be a step towards that. You know, we last month, June, in our LGBTQ pride episode with Spencer West, we talked about that, like, it's okay to, like, say I am pry I'm proud of my identity, even if you don't necessarily believe it yet. Like, you can say it until you believe it. And Yeah. I think that, like, fits into everything we're saying here that, like, you, you know, you can just own who you are. And I promise that when you take ownership of, like, your needs and accommodations is that that's where pride comes from. You can't just like well, maybe maybe some people can just choose to turn pride right on, but I really do think for me, pride came in that, like, standing up for myself and saying, like, I need to do this to take care of my brain.

And Yeah. It was like, oh, wow. I just showed my brain and my body that I'm gonna take care of it. And like that to me is is where my disability pride comes from, is when my my brain and body can trust that I'm here to take care of it and to, like, accommodate its needs, not to try to, like, shove down and hide anything.

Chelsea Bear:

Yeah. No. I I love that, and I think that's such an important aspect of it that I I didn't say before. But, I mean, obviously, it's not always sunshine and butterflies. There there's definitely days that are hard and there's days that you're like, why? I I personally try not to, you know, go down that rabbit hole too much, but it it is important to just own it, every part of it. And like like I said before, just like the community aspect of it is so important, and I think people that try to resist it are doing a disservice to themselves sometimes. And, you know, everyone's on their own journey. Everyone's on their own timetable.

I'm definitely not the person I was when I was in my my teens and and things like that. So take as long as you need to get there if you ever get there. But I I do think it's important just what you said, owning it and diving into it, all of it.

Lily Newton:

Yeah. I know, Erin, we've obviously talked about pride even last season. It's obviously 1 we celebrate every year because it's it's a big deal for us. Erin, do you have any any new updates of, like, what disability pride feels and looks like for you?

Erin Hawley:

For me? Oh, jeez. Well, it's been a journey. I think I mentioned, like, in past episodes I know I have talked about how, like, I didn't always consider myself disabled, which sounds ridiculous because obviously I am. But, you know, growing up with, like, outdated charity stories about said disabled people. That wasn't me. That's what I thought disability was. But it wasn't until I met a community of people who were disabled and shared their interests, their hobbies, their stories that I was like, oh, this is disability, and this I'm okay with. So I I just came into that.

And every year, I just learn so much. Like, even from Lily, I've learned so much. And it's part of my journey, and I'm just really happy where I am. And like you said, not every day you're like, disability is great. Yeah. If you're, like, in pain or something and but everyone has bad days. It's not, like, specific to disability always.

Lily Newton:

Yeah. Well, thanks for saying you learned from me. I feel like I learned from you every single day, and, like, this podcast has been such a big part of my own disability pride journey because, I mean, exactly what you said, Chelsea, with, like, community. It really is finding people you can share these moments with. And, like, you know, even just in the last 30 minutes we've been recording, there's been so many times that 1 of us has said something that the other 2 have, you know, made a face that shows, like, I know exactly what you're talking about. I have absolutely dealt with that. And, yeah, I just I I think that community is really important, and it's okay if your community is, like, listening to this podcast. Like, you can find stuff online or following people like Chelsea online.

Like, that's a great start to just get to see disability every day and see disabled people laughing together and, like, enjoying their time. Well, that kind of perfectly brings us into our next section of the podcast, which, you know, this is an Easterseals podcast repping my Easterseals shirt. So in this final section, we like to talk about the Easterseals pillars. So Easterseals is working to bring equity and access when it comes to community, health care, education, employment, and transportation. We've obviously talked a lot about community and the role it plays in disability pride. Going back to kind of talking about your work as a content creator, what parts of in person community have you been able to find online? And, like, what does community in a virtual space kind of look like and mean to you?

Chelsea Bear:

For me, I will say so before social media, I really didn't know anyone in my personal life with a disability besides myself, and no 1 in my family is disabled. And, of course, growing up, I knew a few other kids with disabilities, but none I was really, like, close with. So social media has opened up such a new door for me in the way that, essentially, all of my friends now with disabilities I've met on social media, and I'm very fortunate to have met a bunch of them in real life now too. But a lot of them really started online, and really just in the comment sections of my posts or their posts. And like I said before, I always try to make it clear, like, I'm not 1 representative of every person with CP or every person with a disability. So I, from the beginning, always thought it was really important for me to familiarize myself with other people's experiences, whether they're familiar to mine or not. And it's really helped me with my platform, but also just in my everyday personal life, you know, identify the the different things that people need. But it's also just been really great personally, just having these friendships and relationships that have been able to grow.

I am always looking to find new ways to join or meet different people, whether it's in person or virtual, but I just find such a big value to them. And I'm really appreciative of of social media for that, because I know social media isn't always a a positive place, but I've definitely somehow lucked out and found that kind of positive aspect of it.

Lily Newton:

That's awesome. And I'm I'm so glad you were able to find those people and, like, yeah, there's obviously downsides to social media. We're not, like, trying to say that there's not, but in the disability world, it really is, like I mean, I think that with the massive strides that we've seen in, like, disability culture being more seen throughout, like, Hollywood or in literature. And, like, I think those strides, social media has something to do with it. And, just even, like, connecting us with each other, like, I think that's just the best part of social media. And, like, even though social media can be scary, it it can be really wonderful to meet people online. If you're a listener and you're like, man, I don't even know where to start meeting people online, I will shamelessly plug an Easterseals initiative right now. We have our ES Gaming Discord, which is a phenomenal place to meet other disabled gamers if you play games.

I'm not even a gamer though, and I love being in the Discord 1000000 times in this episode, but, like, finding your disabled people is game changing. Like, I obviously have nondisabled friends, and they're great. I love them. But my disabled friends have really changed my life in terms of learning to accept myself and learning more about myself.

Erin Hawley:

I'm trying to think if I have any non disabled friends. I think I do.

Lily Newton:

You're exclusive.

Erin Hawley:

Have a lot of friends. Oh. So another part of each of these deals is our commitment to accessibility and inclusion in health care. And you posted on YouTube about seeing a neurologist for the first time. And in the video, you said my body has been giving me all the signs that I need to get additional support. And you also mentioned that support for CP is usually only, like, centered around children. And so I'm wondering what has CP health care looked like for you, and how do you stay in communication with your body's changing needs?

Chelsea Bear:

It's it's a little tough, to be honest. I think even today, a lot of the research and resources and people that go to school to become doctors and PTs, with any kind of special specialization for CP is normally for children. And I always say, obviously, I'm very grateful for that. I was a child once, so greatly greatly benefited from all of those resources, and I definitely think there is so much more that can still be done for children and preventative measures and early intervention and all of that. Definitely don't wanna take away from that. But I think, you know, once you hit the 18 mark, those resources drastically drop, and a lot of the research stops there too. And I think the education of even the medical professionals, at least from when I was a child, they didn't really have that much information about, like, what is my body gonna be doing in different stages of its life. I was always kinda told CP itself doesn't change, So I always thought my level of mobility would stay the same and, just certain things.

I just always was told as a child. I didn't even think to look out for, I guess, the older I got, that I'm kind of not saying I'm learning the hard way, but kind of just going through it without any kind of awareness. And I think, you know, part of a huge reason why I like to share so openly about my journey of going to a neurologist or my knee arthritis and neck pain and stuff that I've been talking about recently. It's it's not to scare younger people with CP, but it's just kind of things I wish I maybe knew a little bit more about when I was younger. And if there is ways for them to maybe exercise a little more or do certain things to reduce the, let's say, symptoms from getting worse. Because, like I said before, like, I was always kind of under the impression, like, this is how it is. It it'll be kind of status quo. In hindsight, that's a little ridiculous because every you know, whether you have a disability or not, everyone as you age, you your body starts doing things.

You know, you have setbacks, and, obviously, with CP, it's just expedited a little bit or maybe a lot. So, yeah, the and the the main issues I have is, you know, I'm in my thirties now, and it's it's just finding people. Like, finding people in the medical space that have knowledge about CP, which I think most people with disabilities have to deal with regardless. But it's most of the time I'm having to educate them about what CP is or they don't specialize in it, and things are very specific to the way I move, the way I can't move, and stuff like that. So finding, like, a physical therapist is even hard to do because a lot of the PTs in the adult space, like, not working on pediatrics, they focus on, you know, car accident recovery or sports injury where I can get a if I get a prescription for CP, they're like, alright. What are your results in 6 weeks? Like, I'm not trying to just, like, repair a broken ankle. It's it's lifelong. I don't need a 6 month prescription.

I need a forever 1. So I think those are the obstacles I find is really just finding people that either do have the knowledge or are willing to sit there and listen and figure out solutions with me. Because beef like we said before, I don't know everything. I definitely don't know anything about the medical space. I don't have, like, a doctor background or anything like that. I really just have my lived experience. So, yeah, I think it's just finding those resources and the people that actually study CP. It's it's really hard to find.

Lily Newton:

Yeah. And that's that's an ongoing thing with Yeah. Disability in general. We need

Erin Hawley:

Yeah.

Lily Newton:

We need more disabled doctors.

Chelsea Bear:

Yeah.

Lily Newton:

Is that that's something I, like, truly believe in, and, you know, we need to make med school more accessible to people with disabilities because that's the best way for doctors to understand disability is for doctors to be disabled. Like, I think that that's really important. And, yeah, I think that that is such a common experience that, like, feeling like you have to be the 1 explaining your disability to your doctor, which my older sister is a doctor, and, like, she was in school for so long. And sometimes I'll be talking to her about things related to autism, and I'm like, how are you in school for, like, 12 years and never covered this? Like Yeah. Like, we really do need more disability trainings and, you know, nothing about us without us, like, led by people with disabilities.

Erin Hawley:

Yeah. I wanna circle back about finding care health care as an adult with a disability, a specific disability. Because when I have muscular dystrophy, and literally, I turned 18, and they were like, okay. You're done. And then you're just stuck with no there's no, like, adult specialist that knows methanolodystrophy. And I think this has to do with, like, life expectancy. But that is so outdated that, like, I'm 40 years old, and I'm thriving. So Yeah.

Erin Hawley:

Get your feet together.

Lily Newton:

Yeah. And it's it's like a horrific self fulfilling prophecy, the, like, outdated life expectancy thing because it's like, well, that's not gonna get better if there's not care for adults.

Chelsea Bear:

Yeah. A 1000%.

Lily Newton:

Yeah. I I do hope that that's, like, the next phase we see in, like, disability acceptance in the mainstream world is, like, just a better understanding of the fact that disabled kids grow into disabled adults.

Chelsea Bear:

Yes. I I mean, even if you Google CP, it's like the largest children's developmental disability, but it like, all the language, everywhere you look, like the CDC and everything, it's just children, children, children. And I think that in itself is a big opportunity because the children grow up. So, yeah, I think that is a huge issue and opportunity that I hope I hope gets figured out.

Lily Newton:

Absolutely. And I do think that, you know, like, the work that content creators like yourself are doing will will lead us there, you know, because you've got 100 of thousands of followers. There's no way that none of them are doctors. There's gotta be some in there that are thinking to themselves, oh, I don't know about this as an adult thing. So I do hope that that and, you know, when we see, like, adults rep adults with disabled adults being represented in films, like, you hope that doctors see them and think like, oh, wow. I'm only picturing children. Well, yeah, that's a that's a big 1, and it's definitely a reason that Aaron and I are proud to work at Easterseals because Easterseals work is at all ages and stages of life. And I think that's super duper important to have, places that don't just let you go when you turn 18.

So shout out Easterseals there, and, thank you, Chelsea, for this whole episode. This interview has been amazing. Before we before we end this, I don't wanna end on the health care note because that's something we don't have to solve.

But you know, we obviously talked a lot about pride. I just would love to end with, a final thing you have to say to any of your followers or any of our listeners who might be struggling with their pride or are, like, excited for disability pride month and wanna celebrate. Do you have any, like, last words for them?

Chelsea Bear:

Oh, I feel like we touched on so much, but I think, kind of going back to what you said, it's it's kind of liberating to own who you are. And I think, you know, my own personal journey, once I hit my mid twenties and really started exploring my disability and not just living with it, I my life transformed in such beautiful ways where not only it introduced me to other people, it helped me learn so much about myself and my own relationships and the way I navigate the world. So if anyone listening, you know, is on the fence of exploring that aspect of of yourself, you know, I'm just a huge advocate for going for it. It it just has positively impacted my life, and I hope that through my content and through this podcast and all of your own personal work, whether that's therapy or whatever it is, you know, I hope that you're just able to love all aspects of yourself and know that the people around you that accept you for who you are are the right people for your life too.

Lily Newton:

What a sound bite right there. Bravo. That's incredible. Listeners, go follow Chelsea on Instagram at real Chelsea is it the real Chelsea Bear?

Chelsea Bear:

Real Chelsea Bear.

Lily Newton:

At real Chelsea Bear. Go follow her on Instagram. I promise it'll make your feed awesome. And, Chelsea, thank you so much for coming on our podcast. It was a delight to get to talk to you. I can't believe our time is already up. I am leaving this with a smile on my face. And, you know, listeners, we record this in advance, so it's not quite disability pride month for us yet, but I am so excited for this to come out in July.

Happy pride month, listeners. We love you. We hope you love yourself. See you again next time on another episode of everything you know about disability is wrong.

Erin Hawley:

If you like 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 Easter Seals 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.