Transcript

Erin Hawley:

Hello, everybody. Welcome to another episode of Everything You Know About Disability is Wrong.

Lily Newton:

Thanks for listening as always. Today, we have a really exciting episode. Today, joining us is Spencer West. Spencer is a global keynote speaker, a content creator, and an activist. He's known for summiting Mount Kilimanjaro on his hands and wheelchair, opening for Demi Lovato world tour, starring in the documentary redefined possible, the story of Spencer West, which debuted at the Toronto International Film Festival. He's also the author of best selling book, Standing Tall, My Journey. His character role, the window washer in the Murdoch Mysteries, and he's a content creator with 4,000,000 TikTok followers. In 2021, Spencer West was named the 2 s LGBTQ plus trailblazer and the number one breakthrough star in Canada on TikTok. Spencer was also nominated for a Queerty Award in 2023 for the TikToker category.

Erin Hawley:

And he's been all over media, ABC News, BuzzFeed, CNN, 60 minutes, and on the podcast with Toronto realm.

Lily Newton:

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

Spencer West:

Thank you. Wow. You read my whole resume. Thank you.

Lily Newton:

It's a it's a stacked list. We had to you know, when when we have such a cool guest on, we have to brag a little, like, look who we got. So, it's a

Spencer West:

It's such a pleasure to be here.

Lily Newton:

Oh, we're so happy to have you. Before we dive into questions in the meat of the interview, let's go ahead and do our audio descriptions, which is an accessibility we feat an accessibility feature we love. This is Lily speaking. I am a white presenting mixed race 27 year old woman. I have green eyes and brown messy hair, and I'm wearing, as always, my black turtleneck, but my fidget necklace that I fidget with in every episode officially broke. So I have a new one. So it looks kinda similar, but it is new.

Erin Hawley:

Nice. This is Erin talking. I am a white woman with red hair, blue eyes, and I'm wearing a striped shirt sitting in my wheelchair in my bedroom. And I'll pass it to Spencer.

Spencer West:

Awesome. Thank you. This is Spencer talking. I'm a 43 year old white cisgender male. I have a bald head. I have brown eyes. I have a, salt and pepper mustache, and I'm wearing, round, black, thick glasses. And I've also got a black t shirt that has an eighties cartoon symbol of She Ra on the front, and I'm sitting in a black chair.

Lily Newton:

Awesome. Thank you for that. Well, listeners, this is a special episode for many reasons. We're just so excited to have Spencer on the podcast, but also this episode will be coming out while you'll be listening to it during pride month, which is really exciting. So happy pride month to our listeners. If you've been a long time listener, you know that Erin and I are both part of the queer community and we love we love pride month. So it's really exciting and we're really excited to have such an incredible queer content creator joining us today. So, yeah, thanks, and happy pride month, Spencer.

Spencer West:

Same to you. It's so exciting.

Lily Newton:

Absolutely. Well, let's get into it, Erin. You wanna take us away with our namesake question?

Erin Hawley:

Sure. So this podcast is named What It Is, and we asked every guest, what do people get wrong about you and your disability?

Spencer West:

Yeah. I mean, there's there's so many things here. The first thing that I find always so interesting is the idea that, a, a disabled person can be queer, and, b, that a dis disabled person can be queer and also want a relationship, both in a physical sense and an emotional sense. And it it always seems so shocking when when you disclose that information and then people are like, wait. What? And I'm like, yeah. Newsflash. Disabled people also want love and sex and all of the things. We want this very similar human experience of non disabled folks.

Spencer West:

So I'd say that's the first one. And then the other thing, it's not necessarily that they get wrong, but everyone is obsessed with my physical anatomy for some reason. Like, a a part of me sort of understands because my T shirts are long. You can't see that I have a waist or that I'm wearing pants. But, like, everyone always assumes that, like, I just am, like, from my ribs up and that somehow I'm surviving like that. I don't know. So those are typically the two main things that people get wrong, or are confused about my disability.

Lily Newton:

Yeah. That that makes total sense. And the there's, like, the reverse of that too that, you know, us gay people, we have bodies and brains, which means that disability will affect us too. Correct. And it yeah. It just feels like there's a sense of, like, people think you get one identity. It's like, actually, there's layers. There's layers to this.

Lily Newton:

I yeah. I think that that's something that especially when you have intersectional identities, it's just something you have to face of people really like to be able to put you in one category. But what you talked about with people being obsessed with your physical anatomy kinda takes us perfectly into our first question. You have a pinned video on your TikTok that is answering the invasive questions that I'm sure you deal with frequently. What was your kind of thought process behind making that video? And, like, how do you tow that line of, you know, answering the questions but not completely obliterating your own privacy?

Spencer West:

Yeah. It was just such an it's such an odd thing. I've gotten it my whole life, like, in person. And so I I don't know why I didn't think about that it was gonna happen online. And specifically, specifically, as I, you know, my TikTok grew and my Instagram grew, it just became the question that people wanted to know over and over again. So I initially was like, okay. Like, I'm fine to answer this once. Like, I get that it it's confusing, and I like to use social media as a way to educate folks specifically about disability.

Spencer West:

But the questions just kept coming and it didn't matter how many time times I answered, like, do you have a penis? Like, are these the where are your body parts and and do they work the same? And so for a while, I started to lean into it and we started to I started to make funny videos around the idea of it because it was so absurd that, like, a, non disabled folks feel entitled to ask those questions, and, b, the fact that they feel entitled to an answer. And then if you're not gonna give it to them, they're they're upset. So, you know, I discovered that one of them I don't know if it's still a thing, but one of the big search things on TikTok was, does Spencer have a banana? Because I think that was like a way to, like, soften it so they didn't have to write in the word penis. Anyway, to make a very long story short, I did a whole video about, like, where's my banana? And I, like, had an actual banana with me. Like and I was like, no. No. It's right here. Like, I keep it right here.

Spencer West:

Keep it in my bag. I could you know?

Erin Hawley:

Oh my god. I I mentioned this in a previous podcast, but, like, sometimes non disabled people say the funniest shit about your disability, and it's just, like, you just have to bring it back to them with humor because it's like, if you get it, you're like dealing with ableism every day is very hard. So sometimes you just have to laugh and turn around on them because what else do you think?

Spencer West:

I've definitely given it back, and and it it happens in person too. It doesn't just happen online. It's people are less inclined to do it in person, but sometimes when they do, if they ask about my genitals, they'll be like, well, where's your penis? And then I usually will give it back to them like, where is your penis? I don't like, it's where it's supposed to be. I don't know. It's not like it has its own calendar.

Lily Newton:

It's on vacation.

Spencer West:

Yeah. Yeah.

Lily Newton:

Yeah. We, through Easterseals, we make a lot of content just trying to help, like, friends and family of disabled people understand, like, disability etiquette, yada yada. And we I think on, like, every page, there's something that we write that's like, if you wouldn't ask your nondisabled friends about how they use the bathroom or the bedroom. Don't ask your disabled friends that. And it's like Exactly. Yeah. There's a certain level, especially being autistic, having, like, a social disability, I'm always like, aren't you aren't you non disabled people supposed to know what you're supposed to say and what you're not? Because I spend so much time being, like, how do I human? And then you think you could just walk up to someone and ask them about their their genitals? Like, like, it's just, it's it's it's silly, and I'm glad you deal with it with humor and, you know, that you're willing to deal with those invasive questions because I do think that the type of content you're making will help other people who are, like, the younger generation hopefully have less of those questions. Like, we are kind of in a new world where we have, like, a lot of disabled content creators, and I think people are getting used to seeing disability every day. So I can only hope that that leads to, like, a generation of people who see us as full humans and don't decide to dig into those really invasive questions.

Spencer West:

Yeah. And and I don't know if if you two experienced this as well, but I sort of came into the world being told that I was my job was to be non disabled folks' educator on disability. And it was such a revolutionary act, and I can't remember who I heard it from. I can't remember if it was Judy Heumann or Alice Wong or but I read somewhere. It was like, we don't have to accept that role. And, literally, this happened to me just, like, 2 years ago. And I was like, what? I can say no. I can decline and say, like, I don't wanna talk about my penis in the middle of the grocery store.

Spencer West:

Like, that was such a revolutionary idea for me, the fact that I could pick and choose when I wanted to be focused as educator. And some people are totally comfortable doing that 24 hours a day, 7 days a week, and that's great. But for me, I'm like, no. I just wanna buy my shirt here at h and m, and I wanna go home. Don't wanna talk about how I go to the bathroom today. Thank you. And that to me was, like, such a revolutionary act. The idea that, like, I don't have to answer if I don't want to.

Lily Newton:

Did that did, like, learning that how did that affect did that affect the way you have, like, other boundaries in life too? Like, feels like a very, like, oh, I'm allowed to have boundaries moment.

Spencer West:

That feels like the last boundary that I discovered. I felt up until then, I was learning about boundaries and and how to set them, but that felt like sort of like the last one of, like, oh, this could also be a boundary.

Erin Hawley:

Yeah. I know for me, I've made videos on social media explaining my disability, explaining how I play video games, and those videos always do amazing on social media. But I didn't want to make them all the time. I just wanted to, you know, make videos about reading books. That's what I love to do, and those videos don't perform as good. But I still gave myself that, you know, I don't have to be an educator. I can just share what I love. So I think that's really important.

Erin Hawley:

Yeah.

Spencer West:

I do too, and I'm so glad that you said that out loud because I think I think that's so important. That's my literally my same experience. My content where I show people how I do things or how I navigate the world does really well. And I think there's an important space for that. But but the minute you deviate from that, the minute you try to be just a normal human, people are no longer interested. And I think that's a interesting dichotomy that I think a lot of disabled folks face. Unless we're gonna do something really cool or inspirational porn y, then people don't really wanna engage in that regard. And that that's that's tough to to grapple with.

Spencer West:

Right.

Erin Hawley:

Totally. Absolutely. It's like you're kind of giving into people's curiosity, and it almost feels like I don't wanna say shameful, but it feels like I don't know. Like, I'm doing something against my former disabled advocates. Like, they would hate to see me doing this, I'm thinking. And that's not, you know, not to say that doing it is bad, but it's just that struggle, the internal struggle of, like, is this okay? Am I doing the right thing? Yeah. Whatever. So

Lily Newton:

Yeah. And, like, putting yourself on display. Like, there's kind of a level. And I, you know, I think about, like there are, like, nondisabled comedians, for example, who are doing similar things where, you know, you're using, like, the trials and tribulations of your life and the those stories always perform the best, but there is a certain level of, like, at what point are you no longer having fun with it? Because it feels kind of compulsory. And that kinda goes into, I think, what we were just saying. That, like, because of the inaccessibility of the world, there is a level of as a disabled person, throughout life, you have to be a self advocate at least. Like, there's a level of advocacy that is, you just have to. But I think if you can, like, check-in with yourself and know you're enjoying what you're making, maybe that's, like, where the line lies.

And and you can tell when people like their videos. Like, I I love when you can tell an artist loves the art they're making. Like, that is really cool. You you mentioned the the line between, like, inspiration porn, and that kind of goes into I a question I wanted to ask you. As a you do you do a lot of motivational and keynote speaking. How do you balance and, you know, this is a question for our listeners here, but also as, like, a young disability advocate. Just thinking about how do you balance that line of, like, wanting to motivate and sometimes inspire, but without becoming inspiration porn? Like, how do you balance that? Because I've never felt like in any things I've watched of you, I've never felt like you crossed into that inspiration porn territory.

Spencer West:

Yeah. So how do you bond with that? That's that's very kind of you to say. And, like, can we swear on the podcast? Is that okay? Okay. Great. Okay.

Erin Hawley:

Yeah.

Spencer West:

Because, like, the Yeah. The story that I wanna tell, I think, emphasizes this. So when I was first becoming a speaker, I had I had a really lovely mentor, and they would work with me, like, once a week, every Sunday in their office. And I remember I delivered a speech once to him, and they're non disabled. And they weren't thinking from a disability lens, but it clicked in for me. I finished my speech, and he looked at me. And he was like he was like, listen. This is great, but, like, I have my legs.

Spencer West:

Why the fuck should I care about your story? And that, to me, what I learned from that was like, oh, when I'm when I speak, I have to be able to relate my experience to someone else's. And so what I what I try to do is, although I might share a story and it might involve my disability, I bring it back to whatever the audience is. You know, if if it's like a a a, like, an audience full of health care workers, for instance. You know, in one of my speeches, I talk about the importance of asking for help, and I talk about how when I was climbing Kilimanjaro with my 2 best friends, I needed their help the first half. And then on summer day, they need they needed my help because they got altitude sickness and I didn't. And then I try to bring it back to what you all do in the healthcare sector is you help people. That's your job. Your job is to help people on a daily basis.

Spencer West:

So for me, it's trying to take my story and not infantilize it and not make it sound like, 'Look at, I did this great amazing thing.' It's like, yeah. I climbed Kilimanjaro, but this is actually the lesson that you should learn from this is that I learned the importance of asking and offering for help. And then how does that apply to you? So that's what I try to do. I think Kilimanjaro, unfortunately, you know, was at the time when I was just discovering and being proud of my disability and unlearning a lot of ableist and unjust sort of thoughts that I had. So Kilimanjaro does toe the line, pun intended, on a little bit of inspiration porn without me realizing it. But that's sort of what I try to do in my speeches is anytime I'm gonna say something, how do I relate it back to the people so that they can see it from their own perspective and not from mine? Because they're never gonna understand what it's like not to have legs. You know? Only people that don't have legs will understand that. So that's what I try to do.

Spencer West:

I don't know if I'm always successful, but that that's what I try to do.

Lily Newton:

Yeah. I think that makes that was just a really clear answer. I really understand that that, like, the the the moral can't just be like, wow. I can't believe that person did that. Like, it's gotta be relating back. That's really great. And, yeah, I think that, you know, what you said about you were early in your kind of acceptance of your identity and that, like, is something I love about the disability community. It's, like, I think we all have this understanding that there's a lot against us and, like, we are not gonna be perfect.

Lily Newton:

And there's things that seem like advocacy that I have done that that I look back on, and I'm like, I think I missed the landing there. But, you know, I think it even, like, hosting a podcast like this, it's it can be nerve wracking because Totally. Like, language changes and what's acceptable changes and things like that. But I think that there is a level of understanding of, like, we're able to say, actually, I I don't know if I'd do that again. But also, like, you could have just wanted to climb Mount Kilimanjaro just because it was a super cool experience with your friends. I'd say that it was you know, it's the the people who are seeing, like, content around that and being like, wow. Let me send this to someone with the with the caption, like

Spencer West:

If he can do it, I can go up the stairs today. Like, you know? Yeah. Yeah. Like, I like, how do you 2 avoid that? Like, what do do either of you have examples of ways that you avoid the inspiration porn?

Erin Hawley:

I just no. I mean, I just, like, I don't have I don't have, like, a plan. I just I just either sometimes I just stop engaging in something if I'm realizing this is not me, or I will say no a lot, which people don't like that. But, you have to, like, protect yourself. And I just I feel it's important for me to handle my own, media. I don't want I don't like someone else telling my story, so I try to avoid that as much as I can. And I just think, you know, being a self advocate is how I avoid it.

Lily Newton:

Yeah. I've definitely learned a lot from Erin on, like, that it's okay to have boundaries. It's it's really nice to be, like, 27 and have a 40 year old woman to, like, look up to and be like, okay. I get thank you for showing me that I'm not a terrible person if I say no to someone. But I think that for me, the inspiration, like, porn that I kinda face in life is as an autistic person, I get I get told that I'm childlike a lot, and what people I think are trying to say is that, like, I haven't lost my wonder, like, and, or that I still enjoy the concept of, like, play. And so I used to really lean into that and be like, I am childlike, and, like, this is it's you can call me that. That's great because I'm fun and silly, It was when I noticed that I was not taking myself seriously anymore that I realized, oh I'm performing this because it inspires other people, and it, you know, people who are locked in the world of adult capitalism see me, like, wanting to play with my toys and are like, wow. But, so that's been something for me of when, whenever people kind of bring that up, I try to clarify.

Like, I think you mean playful because I'm a grown woman. Like, I'm actually not a child, and, the fact that I like a stuffed animal does not actually mean that I can't, like, make choices for myself. And so I think that's a way that I kind of avoid it is that I have to ask myself, am I taking myself seriously here? But it is a it's a hard line to walk, and it's, like, all about our perception of, like, how other people are perceiving us. So, I think it's a thing that maybe non disabled people don't realize that disabled people are combating, like, this own not just ableism but also our how we're presenting ourselves and how we're representing our community. It's a it's a big thing. It's a it's a heavy thing to carry at times, and that that kind of brings us, I think, to our next topic. Obviously, this is our pride month episode. So talking about identity is exciting.

What does, like, identity pride mean to you, and how do you kind of separate your LGBTQ pride and your disability pride, Or is it very similar?

Spencer West:

I mean, I I def I think they intersect. Right? I think the the one thing, as I was listening to you ask the question, that that I grapple with is that it's it can be hard to celebrate my queer pride as a disabled you or as a wheelchair user because most queer spaces aren't accessible. So, like, being able to celebrate my queer pride

Erin Hawley:

Mhmm.

Spencer West:

Can be difficult. And, you know, I have a lot of privilege with my disability. I don't have any legs, and I'm able to get out of my wheelchair and walk on my hands. So I can walk upstairs into a space. Someone can help me carry my chair. I can even carry my chair up a few stairs myself. But I got to this point a couple years ago where I was like, I don't wanna use this privilege anymore because what I'm doing is I'm allowing spaces and people and experiences to say that it's okay. And look.

This disabled person can get in here, so why does it need to be accessible? And and I don't represent the majority of people, specifically when it comes to wheelchair users. And so I've really stopped, whenever possible, not leaning into the capitalist notion of, like, I I'm still gonna support this business even though other disabled people can't. And and so I think for me to to sort of get back to your question, queer spaces are hard for me to access, and I'm no longer willing to use the privilege that I have to access them when no when other disabled folks can't. And so I find it can be difficult to celebrate that queer pride in a larger way. It's fun to go you know, here in Toronto, we have a huge pride festival. We have an entire queer village and street that, celebrates, and there's lots of activities that I can go to and visit outside. But, like, on a regular basis, like, I can't access bars. They don't typically here in Toronto, a lot of the washrooms are in there or bathrooms are in the basement.

So, a, I can't even get in the building. And if I can, I can't really access the washroom? So I don't really get to have the queer experience. And then, you know, Erin, I don't know if this has been your experience. I'd be curious to hear yours too, Lily. Like, the bars and the the tables are so high that, like, I can't interact with anyone or have a conversation with anyone. And so it's just the experience is not fun for me. And I was I tried for so many years to go and do it. And I've realized as I've gotten older, I was like, I'm I'm doing something I don't like to do and that I don't feel welcome at and isn't set up for me.

So I think I I I struggle with that. But then on the flip side, I also feel like it's an act of protest for me to show up and be like, listen. I exist. I'll I dare to exist. I I am I deserve to exist, and I deserve to have these identities as well. So it's it's an interesting back and forth.

Erin Hawley:

Yeah. I totally hear you about the bar situation. We have a restaurant by us that just opened, and all the tables are high. And it's like ADA. Hello? We have a lot of space. That's why the ADA is very important still. Even though it's not perfect Yeah. It is very important. But, yeah, like, I do get what you're saying about wanting to show up as an act of, like Mhmm. Here I am living living my life, but it is disheartening to encounter that Mhmm. Like, all the time, just inaccessible spaces.

Spencer West:

I know. Cool. Go ahead.

Lily Newton:

Yeah. And there's also, like, with queer identity pride, there's a level of so much of the, like, safe places we've been able to find are in, like, bars and nightlife, which, like, thank you to the, you know, amazing drag queens who led most of our pride movements and got us here. But, like, there is a level of sometimes I feel like the only time I'm, like, really holding my queer identity and being, like, I'm gonna go flirt with women tonight, has to be in a bar, and bars are really hard for me. There's so much sound and smells, and, it's really hard for me to have a conversation. And also, like, when I'm in a space like that, I've created a mask for myself that's, like, who I need to be in this space. So it's hard to have identity pride when it's, like, well, I'm I'm lying. Like, I'm I'm I've made a fake version of myself here. So it's hard, and I think that that's something that I've been really trying to do is, like, find ways to love being queer that aren't necessarily nightlife.

Lily Newton:

And, you know, there's you you can be Absolutely. A queer person if you want. Like Yes. You don't have to go to bars. And, that's been that's been kind of a journey for me is understanding, like, how do I embrace that in other spaces? And that makes the accessibility is a whole other layer to that, I think.

Spencer West:

I think it's also, like, important to to note, like, here in Toronto, we also have some amazing organizations that are doing great stuff. So we have something, a group here called the Disability Collective, and they do, like, a queer disabled cabaret night at one of the one accessible bars here in Toronto. And the entire anybody can, like, apply to perform and it's just a night, that's safe for disabled and queer folks to celebrate the art that they create and be a part of that. So there are spaces that we're starting to figure out how to, how to create and how to create access for. But as per usual, it's always up to us. Right? Like, we're always the ones that have to figure it out and have to navigate the system end, end, end. But I I I think it's important. It it can be so easy for my at least myself.

I can only speak for me where I'm like, oh, it all sucks and it's hard. And, like, I don't feel like I can belong, but I'm but there's good things out there too and there's groups that are doing good things, to advocate for us and and to help us have space and community. So that does also exist, you know, and I think it's important to to note too.

Yeah. Those spaces are so incredible, and, like, I think that there's I feel like there's been a kind of, like, cultural shift in the world of this understanding of how important community is. And, I do I do see that, like, popping up more of these, like, groups that are specifically, like, we we designed this for you, and I hope that there's at least one person who listens to this and who's been, like, wanting to start something. Yeah. Do it. It's it's great. Like, we need these faces. One of my close friends and I started a queer sober comedy night, because so many comedy shows are based around, like, spaces that are filled with alcohol, and there are Yeah.

Lily Newton:

Comedians who don't feel safe in those spaces. So we we, like, kind of threw it together and we have said it's kind of our, like, field of dreams moment. We're, like, if you build it, they will come. So And it has been the case. Like, it it's not been as much work as you expect. I think that I say this just for anyone who's listening who's wanted to start something like that. It's it's it's not as lofty as you'd expect. People want community

Spencer West:

Yeah.

Lily Newton:

And we'll show up.

Erin Hawley:

Yeah.

Lily Newton:

And we're we're everywhere. Us, LGBTQ plus, disabled, we're everywhere. So, like, we'll come to anything. Yeah. I think that that and you've you've dealt with the inaccessible venues in kind of big spaces as well because I think I I watched your, TikTok. It was you know, getting nominated for the Queerty was amazing. That was an inaccessible venue. Right?

Spencer West:

It was. And, you know, it's just one of those unfortunate things. Again, like, I the the privilege of my disability is I could make it work, but had that would've that have been anyone else, like, it wouldn't have worked for them. They wouldn't have been able to really participate.

Lily Newton:

Right.

Spencer West:

So yeah. I mean, as there's still lots to be done.

Lily Newton:

Definitely. I mean, it's, listeners, when we're recording this, it's the week after the Met Gala. And I that was all I could think about as I was watching the Met. I was just like, this is a lot of stairs.

Spencer West:

Some people had to be physically carried up the stairs because of their dresses. And I'm like, I just think imagine Anna Wintour building this incredible spiral ramp that, like, that in itself could be a showpiece for the MET and where you could have, like, a pit of photographers. Like, ask us disabled folks. We are so innovative. We will help you. We will make it happen.

Lily Newton:

Yes. Especially with a thing like the MET where it is about, like, innovation and design and new idea. I'm like, that's a space where you need disabled people. I'm telling you disabled people would come up with the coolest things and interpret the themes so well. Like, we've we've had to be innovators our entire lives. So give us space to get to show that off. Like yeah. Definitely.

Lily Newton:

So one question I wanted to ask was as we're talking about inspiring our listeners to maybe go out and do their own thing. What obviously, right now in the TikTok world, just social media in general, there is more space than there ever has been for disabled content creators. What is your advice to someone who is, like, really wanting to make their own content, wanting to share their story, but feels like, blah, they don't need my voice in this space.

Spencer West:

Yeah. I mean, listen. I think one of the the the great things about social media is that we have control of the narrative for the most part. You know? If you wanna share your story, you get to share it how you want it and how you want people to receive it. And, you know, for so long, we as disabled folks didn't have control of that narrative. Someone else was telling it for us. And in some spaces, that's still happening. But I think that's the beauty of social media that if it's something that you really want to do, you get to do that And you get to decide how much you let people in and you get to decide what you wanna share.

Spencer West:

And I think that is the beauty of social media. Now, as we all know, when you open yourself up, unfortunately, that also opens you up to questions and things that you may not want. And I just want to be clear like, you don't have to accept that, and you don't have to be okay with that. Some people feel like and I said this for a long time too that I was like, I know that I'm signing, like, a social contract. Like, this is what I sign up for. But but yes and no. Like, yes. I realized that that's that probably could happen.

Spencer West:

And, no, I don't have to accept that. And I don't and so I sort of I heard someone else say this once, and I I wish I could remember who it was, but I've sort of been treating my social media like this. I'm like, my social media is not a democracy. I get to decide what how safe the community is and I get to decide who gets to engage and who doesn't. And if you're here to cause harm to the communities that I belong to or to anyone, then you don't get to participate anymore. So I think for anyone that that wants to use social media, I think it's a a great idea. But I think these are the things to think about, when you do it. But at the end of the day, it's your story and it's your life and you get to do that however you like.

Spencer West:

So for me, it's hard to give, like, necessary advice other than I can just say what my experience has been, you know.

Erin Hawley:

Yeah.

Lily Newton:

I think that's phenomenal advice, though, the thinking about, like, how you're gonna protect yourself before launching into that public space.

Erin Hawley:

I have a question related to that. Kind of a self

Spencer West:

Yeah.

Erin Hawley:

Question. But as somebody who is also does YouTube and stuff, how do you manage it's a lot of work Mhmm. YouTube Mhmm. And TikTok. How do you manage your schedule and, like, filming? Do back film? How do you, like, stay on top of it?

Spencer West:

That's a great question. Erin is literally all over the place. Like, some weeks I'm really good and and I'm able to, like, come up with because I post Monday through Friday. And so some weeks, I I'm really good. Like, I have a a business partner and a friend, who's non disabled who I've been working with forever, and we're we make a really good team. So I'm not having to come up with all of the ideas on my own. So we usually meet on Monday and like try to come up with ideas for the week or as much as we can. And then we'll have another meet meeting maybe midweek to come up with other ideas.

And then if I know that I'm gonna be away, we try to come up with ideas and then I'll try to backfill so that then when I'm away, I still have content to post. But I'm not always good at it. And then, like, then you fall out of the algorithm, which sucks. And then you have to, like, fight to get back in again. And it's it's a constant circle. So I'm not I'm not always great at it. And that is one of, like, the the difficult things about social media if you're using it for a way to also make money. And I think that's the important distinction.

I do use it as a revenue stream, so part of me has to continue to keep popping out content for that. For me though, what I've what I've done and what we did from the very beginning when we started to, have a bit more exposure is I set up some rules for myself. And I said, as long as my content has either heart, humor, honesty, or awareness or a combination of those four things, then I'm I'm doing my job right. So that gave me the freedom to, like, not everything has to be educational. Some things can be fun, and those sorts of things, but it's really hard, Erin. It's really hard to stay on top of it. It's really hard to come up with 5 ideas every week, all year. It's exhausting.

I burn out a lot for sure, And that's when I lean on my business partner and friends to, like, help me come up with ideas and stuff, to fill. And I'm trying to be less rigid about sticking to like, I'm trying to give myself more breaks. But it's hard because then you fall out of the the algorithm. And that's been my experience, anyway. I don't know if that's helpful or not, but it's like it's like adulting. Like, no one has it figured out, and this is no different. You know?

Erin Hawley:

Yeah. And they change the algorithm Mhmm. Like, every every day. But, yeah, that's great advice. Sure. Thank you.

Lily Newton:

Yeah. And that advice, I think, matches with the kind of shift we've had in the world of, like, that your whole life doesn't have to be your job. Yeah. Even if your job is content creation, like, there is a level of that balance. So I I love that you found that balance. And I think having those values seems like a really great way to just, like, ensure that you're staying aligned because I think that when for me, when I start to get, like, burnt out is when I'm just like, okay. Just make whatever then. Like, just get whatever I can done.

Lily Newton:

And I think having those values to, like, realign yourself with is is just really smart and makes sense how you get so much good thought.

Spencer West:

I I also wanna say too, like, I'm 43. You know? And, like, I'm so glad that this happened to me at this time in my life because if I would have been in my twenties, I think it would have been a mess. It would have been really hard for me, and I would have really wanted to, like, please people and make content that people wanted, not not what I felt was authentic to me. And so a lot of this also comes with time and experience and life experience of, like, no. I know what my boundaries are. And if, like, I if there's a day that I start getting difficult comments or something, I'm, like, I'm not coming back to these comments. I'm not gonna answer them. I'm not gonna move forward.

Spencer West:

And I also made a rule for myself where I was like, if I can't answer everyone's DMs, I'm not answering anyone's DMs. That's just like a boundary for me. And I think that just comes with time and experience, and you have to figure out for yourself what works for you. And that works for me, but that may not work for y'all who are listening or or the the 2 of you, you know. So I think that there's that aspect as well that I think is important to name.

Erin Hawley:

That is great. Very relatable because I'm also in my forties and it's like, I just don't care about whatever you think anymore. If I did care, I'd be in bed Totally. Trying Totally. Every day.

Lily Newton:

Yeah. I think that that is, like, like, in your thirties or forties and fifties even, it's it's like a safer age to have the public eye on you because I do think about that. Like, in the autism community, there's, like, you know, a lot of late diagnosed but still very young people who are, like, between 18 and 22, and they're making tons of content, getting tons of eyes on them. And, you know, as a 27 year old, I think back to, like, the stuff I was making when I was 22.

Lily Newton:

I had millions of eyes on that, that would have really dictated what the rest of my life would have looked like, which is no shade to anyone who gets, you know, a lot of attention young, but it's just a reminder that, like, it's worthwhile to spend the time to get to know yourself and who you are so then you can, you you know, be like Spencer and have real boundaries because you've learned them through life experience. I think that's super important, and there's so much pressure on, like, 20 year olds. It feels like you gotta have your entire life figured out. You gotta have your niche audience by the time you're 30 or you're no one. And that's just not true. It's just a manual

Spencer West:

Yeah. And, like, I didn't know who I was in my twenties. And I think that's why when you get to your forties at least for me, my thirties were learning who I am. My forties are learning how to live it. And and I think--

Lily Newton:

Oh, I love that.

Spencer West:

And some people get there faster. So, like, you don't always have to wait till your forties. But for me, that was that's what it took. And I I wouldn't have been able to be successful now, had I not had us if I didn't know who I was. You know? And that can always change and evolve, but, like, I'm so grateful it happened now because I have a stronger sense of self than I did when I was in my twenties.

Lily Newton:

I love that. I think that that is a real nugget of wisdom, listeners. Keep that. Well, before we get into the final section of our interview, you know, we talked about LGBTQ plus pride a little bit, because this will be coming out in June, but one of the best parts about being queer and disabled is that all summer is for us. It's actually yeah. You can't enjoy sunshine if you're not disabled. It's for us. June July, that's ours.

Lily Newton:

But, yeah, so if if you don't know, listeners, June is pride month, but there's another pride month in July. We have disability pride, which is phenomenal and necessary. What was your journey with, like, going from just maybe acceptance to pride in your disabled identity like? And, like, what does, if you have an answer to this, what does that, like, pride feel like?

Spencer West:

Yeah. That's a good question. The the first thing if I wanna address, like, my journey of of self acceptance and and even just being confident to say I am disabled and I love that I'm disabled. Like, that was so hard. And I would say it's only been in the last 10 to 15 years that I've been able to confidently say that. And part of that work was I had to undo what I learned. You know, I grew up in the eighties, where disability was talked about differently. It was it was you don't wanna be seen as disabled.

You wanna overcome your disability. You wanna prove that you can do things just like everyone else. And so that's the that's the headspace and how I sort of navigated the world. And although I don't have any legs and I'm and I'm a wheelchair user, like I said, I had a lot of privilege. I could get out of my wheelchair and and learning was my disability didn't affect the way I learned. And so for all intents and purposes, I didn't really interact with other disabled folks. And and so I sort of had this it wasn't an arrogant air, but I was like, I that's not my community. Like, I don't belong there.

And then as I started to learn about disability justice and as I really leaned into just justice work in general, I was like, wow. What I've learned is so wrong, and it's actually limiting myself and it's limiting who I am. And I had a lot of learning to do, and I still have a lot of learning to do. So a lot of the videos that I make now are just in real time, me learning new concepts and things that I think a lot of disabled folks have been saying for 50 years that I'm just catching up to. I'm giving a speech once, and for the first time, I just tried it out, and I was like, I talk about my identities of, like, you know, being a, an uncle and being a a brother and being a grandson, and then I was like, and I'm also disabled and I'm proud to be disabled. And for 2 or 3 years, I had to just say it out loud until I believed it. And then, of course, therapy really helped. I've gone through a lot of therapy and really examined in my internalized ableism and the systemic ableism that I've learned through our global sort of culture that that we've curated.

And so it's it's been a real journey, but now I'm I'm really leaning into I'm I feel like I'm at a point now where I'm really starting to be able to lean into the pride part, and learning that disability pride exists. And, this is the 2nd year I'm on we at Toronto has a disability pride march every July, and this is the 2nd year I'm on the planning committee with that. And that has just been such a joy to be in space with other disabled folks and to talk about what pride and a and a and a pride march looks like for us. But it's taken a lot of really hard work and making a lot of mistakes and a lot of learning, to figure out what that looks like and how do I celebrate that and what does that mean? What does that mean for me?

Lily Newton:

Thank you for sharing that. I think that's incredible, and I'm glad you've gotten to that point. And I think it's really important to say out loud that, like, you can say things that you want to believe before you fully believe them. Like, you can you can say, I'm proud of my identity even if you're still feeling like like, I feel a lot of imposter syndrome in my identities, but I'm still gonna say out loud that I feel very secure because the more I say that, I I hope by the time I'm in my forties, then I will feel feel secure. Yeah. You're not a liar. Like, it's okay to it's okay to just Yeah. Try it out.

Lily Newton:

Like, how does it feel to say I'm disabled? That's okay.

Spencer West:

And to just, like, celebrate that or remind yourself, you know, I RuPaul, at the end of every Drag Race episode says, you know, you can't love yourself. How in the hell are you gonna love somebody else? And I heard RuPaul say in an interview, they were like, I'm saying that to me. He was like, the whole reason that I started doing that is a reminder to me. And he was like, it caught on. So, like, in in the caption of every video that I create, I write at the end, and Spencer looks very handsome doing this thing. And for me, that's a reminder that, like, I am worthy of love and I am attractive and because I don't always believe those things. And so if it's I found for me that if I say them even if I don't quite believe them in the beginning, I usually get there.

Lily Newton:

I love that. Yes. And I'm a big Drag Race fan.

Spencer West:

Oh, yes.

Lily Newton:

Knowing that fact. I didn't know. I didn't know that. Yeah. Saying that too. That's wonderful. I love that. Well, okay.

Lily Newton:

So we have a bit of time left. The third section of our interview, we like to you know, this is an Easterseals podcast, so we like to talk about the Easterseals pillars. So, for listeners and for you, Spencer, just so you know, at Easterseals, we are working to bring equity and access when it comes to community, health care, education, employment, and transportation. So we like to kind of you know, those things affect every single person. These are the social determinants of health, but they look different to each of us. So, we've talked about it a little bit, but when it comes to community, how has both online community and in person community helped you with that journey for Identity Pride?

Spencer West:

Yeah. I mean, it's been it's been so important. The online community has been so important because I've been able to learn from so many amazing activists like, you know, Amani Barber in Crutches and Spice. Like, her content is I just I can't get enough and and she really goes for it. And, you know, I had the opportunity to be on Judy Heumann's podcast, you know, not too long before she passed away. And so I think social media has allowed me to be able to tap into a community that I think it would have been harder to have access to if social media didn't exist. Can you remind me of the can you repeat the question again? Because there's something else I wanted to say, but I've forgotten.

Lily Newton:

Just how has that community helped you with your own kind of identity? Just how important is it to generalize?

Spencer West:

In person, I've I have a an incredible friend. Her name is Sally. And, you know, all my friends have been really supportive, but she was the first person. We were get all going out one time, and she was like, hey. Do you want me to call and ask if they're accessible? And it was, like, such an emotional moment for me to be like, oh my god. I didn't know that I needed that. But, yes, I I actually do. I would really love for you to do that if you don't mind.

And that was the first time where someone in my close circle saw me and know and recognized the extra labor I was doing to exist in our friendship group and to offer to hold space and take some of that labor off of me and and to do that. And then it was mirrored, and my other friend started to do it too. And I think that was, like, a really profound moment. I don't think I've ever talked about publicly before, but that was a really profound moment for me. And I, you know, I have a partner and we're just celebrating our our 2 anniversary and he's from the minute we met, he's always been so good at that. That that that doesn't have that's not a labor that I have to do. He's happy to take that on, and that was such a freeing and beautiful moment. And this you know, and it turns out some of these friends have discovered they have disabilities now too.

And so that how do we care for each other and how do we do that care work and help each other manage that labor has been such a beautiful, beautiful thing as we still navigate the inaccessibility of healthcare and transportation and education and and all of the things, I think what we do really well as disabled people is we know how to take care of one another and provide that support or at least provide the space to be like, it's not the same experience, but I can still relate. You know? So the community has been so important for me to learn how to do care work, but also how to receive care work as well.

Lily Newton:

Oh, I love that. Yeah. I think, you know, Easterseals has so many incredible programs. And the one that to me, I just makes me, like, get emotional is thinking about the camp experiences that so many of our affiliates have because, you know, it's those moments where you, like, can hopefully at a young age learn, like, wow. We can help each other, and we can be interdependent instead of independent. Like, community is so important. So thank you for sharing that. And I'm so glad you have Sally in your life.

What what an incredible friend. Friends are so so amazing. So wonderful, Sally. Erin, you wanna pick the next topic? We've got quite a few. I don't know if we'll get to all of them.

Erin Hawley:

Yeah. I am curious. Easterseals does a lot to make, to advocate for accessible Mhmm. Transportation, especially Mhmm. Airlines. And we all know the horror stories. Is it afraid your wheelchairs are damaged every day? How has how has your experience been with travel?

Spencer West:

I mean, again, I I wanna highlight that that my my privilege of my disability is that I'm able to get out of my wheelchair and walk on the plane myself. So, like, I don't really need a lot of support when it comes to flying or travel in that regard. And, usually, what I need is someone to help me carry my bag to my seats, and I've never had an issue with that. I have experienced 2 things with my wheelchair, though. One time, I was traveling overseas and I arrived, and the the the the rim where you hold on to to push your chairs, I'm a manual chair user, was dented. And so that that sucks. And we all know that, like, wheels are expensive. And I don't think people realize depending on your wheel, it could be, you know, 500 to a $1,000 per wheel and and so that that sucked.

Spencer West:

And I didn't know that you could ask, like, for for compensation. This was a long time ago. So, I didn't know that you could ask for compensation. And then one time, I was traveling for a speech and the airline forgot to load my wheelchair on the plane. And so I arrived at my destination and there was no wheelchair. And they obviously felt bad, but they were like, well, here. Just take this wheelchair. And it was like those, like, air airport hospital wheelchairs that and it's one of those things.

Spencer West:

It's like, we are not a one size fits all. It's like it's like me coming in and saying we lost your clothes here. Here's an extra large pair of pants. I don't care if it fits you or not. This should work. Right? And, like and so those are my two experiences. I I'm I'm grateful that I that's all that I've experienced. And so for me, this isn't a topic that I feel like I can share a lot about, watching other people have such horrific experiences when you have to rely on someone else to put your physical body on the plane.

You know? So I don't know if either of you or Erin, if you've had a good experience that you wanna share because I feel like in my for me, I wanna, like, pass the mic to you and be like, I want other people to share their stories. You know?

Erin Hawley:

No. Like, I don't fly because if something happened to my chair, I'd be stuck in bed, and that's very unhealthy and, like, mentally, physically. So, like, airline travel is just completely closed off to me. And then you said that not everyone can use the same chair. My chair is very specialized to how I sit, and I think people don't realize how vital that is. I can't even sit in the airplane seat. So, yeah, my experience is that I haven't flown because I can't.

Lily Newton:

We're we're waiting. The that's a big thing Esus feels is pushing for is that we just need plan models where people can stay in their chairs. It's it's if we can have these luxury first class pods, we can figure it out. I know it. And that's kind of I feel that way about a lot of just innovation in general. It's like, you know, I think if we can do this for the Uber wealthy, we could do a lot for

Spencer West:

And I think this is where social media plays a great role because we're seeing that disabled people are telling their stories and media is starting to pick it up and we're holding airlines accountable. And I think in our lifetime, we'll see that shift. But it's unfortunate the work that it takes to get there.

Lily Newton:

I completely agree. And, you know, that that that statistic, the 31 or 32 wheelchairs a day, that stat's been around for a long time, but I really don't feel like anyone knew that until a few years ago. And now I do think that, like like you said, because of social media and because of the way the TikTok algorithms work work where, you know, you're seeing content from people maybe you don't follow, I am hopeful that I completely agree. I think we will see it in our lifetime, and I think that a big part of that is of all the things that I am incredibly hopeful that we'll see in our lifetimes, I do think that there is a lot of credit to be given to people who are spending their time creating content like yourself, Spencer. So thank you for the work that you do. Thank you for, just making disability more visible in general and doing it in a way that is fun to watch and just, like, you're a joy to talk to. So, this has been an incredible recording. I don't wanna keep you too long over time because I know Erin and I would talk to you for hours and hours if we could.

Lily Newton:

Before we sign off, is there anything you want to tell our followers? Anything you have upcoming or just a negative wisdom you wanna leave them with?

Spencer West:

I would say there's 2 things. Number 1, I'm obviously always available for speaking engagements, and, you know, obviously follow on social media all the things. All my handles are Spencer to the West, with with, like, the number 2, Spencer to the West.

Lily Newton:

Cool.

Spencer West:

I think I think the last the last thing I would like to say is wherever you are in your journey, specifically as a disabled person, wherever you are is okay. And whether you are comfortable with being disabled or not, just be gentle with yourself. I think there's so much that we already have to experience that, if we can learn to be gentle with ourselves and and be okay with where we are and be open to evolving, I think I think we don't talk about that enough.

Lily Newton:

Yeah. That's it. It is.

Erin Hawley:

It's a journey. Not it it doesn't Yeah. It never ends. Yeah. Nor should it Yeah. Ever ends.

Lily Newton:

Yeah. But thank you so much. It's such a pleasure.

Erin Hawley:

This is amazing.

Lily Newton:

Such an incredible way to end the episode. Nothing I could say could top that. That's just so wonderful. And listeners, I hope you are extra gentle with yourself today. It is very important, and we're we're glad you're here and taking care of yourself no matter where you are in your journey. Thank you so much, Spencer. Just a genuine joy to get to chat with you today. And listeners, happy pride month.

If you're part of our LGBTQ plus community, happy almost, disability pride month. Hope we have a summer of celebrating ourselves, loving our own identities, and being gentle at wherever we're at. So tune in next time for another episode of everything you know about disability is wrong.

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 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 through another episode of everything you know about disability is wrong.

Lily Newton (commercial segment):

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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.

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

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