I grew up without any disabled friends. Consider what that means for a second: we’re one-fifth of the American population, the largest minority group in the world, but I didn’t really know anyone who lived in a body like mine or understood what it’s like to get cut open every few years until after I graduated college. My parents tried to fill the void through Challenger baseball teams and phone calls with so-and-so’s nephew who also has cerebral palsy, but the bonds never stuck beyond the end of the season or when we hung up.
Ableism played a big role, truth be told: the structural kind made it tough to find each other, and my own helped me assume we didn’t need to. As someone who holds her own in the able world, I didn’t realize that I’d been absent from my own community for over two decades. No one expects a queer person my age to go it alone for that long — but isolation is still part of the disability equation.
I finally found my fellow disabled folks through the internet, which is no surprise. Ali hit the nail on the head in her recent Queer Your Tech: “Communities whose members were fewer and more spread out found a way to cheaply congregate over long distances… The relationships we forge in cyberspace don’t stay there. They have consequence in the physical world.” I’d argue that goes double for disabled people, who know the impact of those “long distances” all too well. And Buffalo-based writer Angel Powell has a lot to say about it.
Angel’s essays and poetry explore the intersections between sex, gender, race, love, and disability. In “I’ve Never Been In Love, But I Know I’m Not Ready,” she outlines how standard-issue romance doesn’t quite cut it for lots of disabled folks:
“I am a giant fan of romantic comedies and for a long time I naively believed that was how love actually worked. For a while, I told myself it had to wait, I had to be in the right place with the right people, and that life was so much bigger than high school. I was right about life being bigger than high school, but… I didn’t understand why love just wouldn’t happen for me. I knew that it might be harder for me than for my able friends, but it felt like it was just skipping me completely.”
We talked about how online friends can become family, disability’s place in activist spaces, and what the Trump era holds for disabled people of color.
What does love mean to you?
I have a very interesting relationship to love. Because technically, the only love I have is platonic — romantic love just does not seem to work out for me. In my last year of college, there was this girl I’d fallen in love with, and she was really nice to me. No one had ever been as nice to me as she was. She was able-bodied, and I thought she was beautiful, and smart, and funny, all those things that you think when you see a girl and you’re like “oh my god.” But I found out she had a boyfriend, and then she told me she had a brother who has autism, and I’m like “that’s why she was nice to me this whole time!” There’s this extra sting that comes with it. In that moment, you didn’t see my humanity — you saw me as a person to feel sorry for. That’s not cool.
When you’re in a chair, women aren’t thought of as sexual. In the able-bodied world they’re taught, directly or indirectly, that we’re not supposed to be desirable. And then there are people who feel like “if I get with a person in a wheelchair, I’m a hero.” No you’re not! I went to school with a guy who was a Paralympian, and he had girlfriends the entire time I knew him. I thought it was very funny. If you’re a guy in a wheelchair, people will gravitate toward you. I thought it’d be the same deal with me, because I also date women — and then it wasn’t.
My experience with romantic love (or lack thereof) makes me take my platonic relationships more seriously. Knowing they may be the only ones I have saddens me sometimes, but my friends accept me in all forms.
Are most of your friends able-bodied, or disabled, or do you have a mix?
Ninety-eight percent of them are able. I didn’t get more disabled friends until the internet. When I was growing up in school, I didn’t have very many friends. I did not like school at all. The first school I went to wasn’t actually in my city; it was in a suburb an hour or two away. That’s where the county chose to send me to because there were more kids with disabilities out there.
“There are people who feel like ‘if I get with a person in a wheelchair, I’m a hero.’ No you’re not!”
I don’t remember having problems being in a wheelchair around other people until about third grade. Because we don’t teach kids about the fact that people look different in the world. We teach them about race, gender, all that, but we don’t teach them about ability. So what frustrates me is that I [was] a normal eight-year-old just like every other person in third grade, but I get stared at more. And more of my gestures and things like that are made fun of. And I don’t think I realized how deeply ingrained that stuff is until I became an adult. And the internet kind of brought me to a space where, with able-bodied people first, I could be judged a little less. Because you didn’t have to look directly at them.
Does that make it easier to talk about disability with them?
With one of my closest friends, V, I didn’t have to explain much to her because we didn’t become friends until after working together. I connected with her on Twitter — she’s a writer also, and I really liked her work — so we worked together as writer and editor and I wrote this very detailed, intimate essay about what it’s like to balance having cerebral palsy with having major depressive disorder, and having those two things cross wires. So it was already on the table for her, whether I liked it or not. And I see our friendship in a unique light, because I feel like if you can know all that stuff and you can still choose me… well then, yeah.
What do you think she does well as a friend?
I’ve never felt like I had to be somebody else. I don’t have to act like I’m not bummed out by shit every day. Y’know, truly, I am! So I’m really grateful that I don’t have to show up and be some different person. I have to have other people help me go to the bathroom, help me get dressed and undressed. All of these things that, because the able-bodied world isn’t taught about respecting others in different positions, people would normally push that away or be weirded out. And with her — it may be because we’re grown-ass women — she didn’t.
“I’ve never felt like I had to be somebody else. I’m really grateful that I don’t have to show up and be some different person.”
My other friend I met on the internet, C, wasn’t as familiar. We didn’t have a working relationship before friendship. So I had to get used to telling her certain things about me. I have hemiplegia — one side of my body is much stronger than the other — so I was explaining to her that when I do things, I have to be slower, because I can only use one hand. And she was like “you can only use one hand?!” It flipped her out! Not in a bad way, but just an “I didn’t know that existed” kind of way.
Are C and V different than the able people you encounter offline? Do you think the internet plays a role in that?
To be honest with you, yes. They know I love them both, but I feel like if I had met them in person, it would have been way too fucking awkward for anything to actually happen. I’m an awkward human being and an introvert, point blank. I only have a certain amount of energy in terms of being out in the world and interacting with other folks. So if it wasn’t for the internet, I don’t know if our friendships would exist right now — and that makes me very, very grateful because I’ve learned and grown a lot being friends with them.
What have you learned?
I am entirely way too mean to myself. I’ve been in a chair my whole life and I guess some part of me thought “if you strive to be perfect in other ways, nobody else will notice.” And that’s not really a real thing — they’re gonna notice regardless. So for both of them to be like “you gotta calm down, you’re way too mean to and hard on yourself,” that makes me feel really good as a person. They can see the stuff that I can’t. I don’t see it, necessarily, as me being too hard on myself. I see it as “these are the things that have happened to me.” And once they’ve talked to me about it, I’m like “damn, that is a really high expectation.”
“I only have a certain amount of energy in terms of being out in the world and interacting with other folks. So if it wasn’t for the internet, I don’t know if our friendships would exist right now — and that makes me very, very grateful.”
I’m the same way — it’s not until somebody says it back to you that you realize it sometimes. Who reached out first?
I’ve been friends with C longer; I’ve known about her for about four years and been really good friends with her for two. She put a sense of normalcy and a very steady pace in my life. But it also scared the hell out of me. Because I’d never been so close with anyone — I’m not necessarily close with my biological family — so I could talk to her in a way I couldn’t talk to anyone else. I was afraid that I would get so comfortable that one day she’d up and leave and I wouldn’t have that anymore. And what am I supposed to do then? So I was always very, very afraid. I’m not used to having someone be like “no, I’m here, I swear.” And it wasn’t until her that I thought “okay, maybe I can calm down.”
“I think about people who had disabilities in the 1950s and ’60s, and they stayed in group homes and didn’t interact with anybody beyond the other people there. How much does that sort of thing affect your growth as a person, mentally and emotionally? We are so focused on physical growth that we don’t think enough about how people are growing emotionally.”
It’s so important to have people like that around. I feel like that’s something a lot of people expect from their biological families, who may or may not be able to come through.
I feel like when you have a disability — maybe it’s just a “being in a wheelchair” thing or a “mobility device” thing — when I was a kid, I don’t remember being held a lot. Because why would you do that if I have a wheelchair? So the affection that comes from that tactile relationship, that is not stuff that I think anyone around me could deliver. It wasn’t until I met my friends that they were like “seriously, I think you’re amazing.” I’m an “I love you” person, and most of the people around me aren’t. But with my friends, I am, and they don’t care.
I’m so close to my friends that I’m not sure anyone else could meet the same standard that they’ve set for me. My therapist always tells me “you have to go out and meet more people; just having online friendships is kind of cheating.” But that’s totally not cheating!
Not at all! And I think it’s that way for a lot of disabled people — able folks like to dismiss online friendships and communities, but what if the world is a hostile place? Then what?
Right. And I think about people who had disabilities in the 1950s and ’60s, and they stayed in group homes and didn’t interact with anybody beyond the other people there. How much does that sort of thing affect your growth as a person, mentally and emotionally? I think we are so focused on physical growth that we don’t think enough about how people are growing emotionally. You can be an adult on the outside and still have very childlike emotions because those are real experiences for you.
“If you’re a person of color and you’re in a wheelchair — and if you’re a queer person in a wheelchair — there’s this idea that you don’t count in the movement of people of color trying to express how white supremacy has affected them, and you don’t count in this group of queer people talking about how the patriarchy and the election of Donald Trump has affected them… How am I supposed to embrace all of those identities if you keep shutting me out?”
Anyone who’s grown up with any sort of trauma — which I would argue is all disabled people on some level — that internal conflict can come up. And you have a completely experience with that than I do, as a person of color.
In terms of identity, I knew that I was Black, but I always felt like my race isn’t what makes me stick out — it’s the fact that I’m in this chair. Intersectionality is a very new idea; that wasn’t a thing when I was 11 years old. Not by the same name, and not as heavily academic as it is now, anyway. So I didn’t really think about the different types of intersectionality among people I met in wheelchairs or with disabilities, period. Everyone thinks the representation of disability is a white male. If you’re a person of color and you’re in a wheelchair — and if you’re a queer person in a wheelchair — there’s this idea that you don’t count in the movement of people of color trying to express how white supremacy has affected them, and you don’t count in this group of queer people talking about how the patriarchy and the election of Donald Trump has affected them. It’s a very weird space to be in.
Whatever your identity is, that’s supposed to be your safe space. What if there’s just no space for me? Maybe in each one of those spaces, I have to be a different person. There are disabled people in those communities, and we deserve to be acknowledged too. That stuff can get a little frustrating. How am I supposed to embrace all of those identities if you keep shutting me out?
I think the tendency among white disabled people is to put disability first and whitewash everything else out of the equation. Even under Trump, white disabled people are categorically safer than disabled people of color are.
Absolutely. I’m genuinely terrified of a Trump presidency. I remember getting the final result at three in the morning and crying. I’ve never felt so personally attacked before. My college was a very private college, which also means it was very white. I had friends — both straight and queer — who voted for him. Why? All through the election, I kept making the analogy of a cow voting for a slaughterhouse. I feel like if you voted for him and you said you were my friend, you just voted against me.
People are like “oh, it’s going to be fine.” No — it’s not going to be fine. This man knows absolutely nothing and keeps appointing people in his cabinet who don’t know shit either. It’s very dangerous.
“This election was not the election to play with. We were so, so confident this was not gonna happen. But in the back of my brain, as a marginalized person, was ‘what if this does happen?’ As a disabled person who, at this point in my life, relies a lot on the government, that shit is truly terrifying.”
Did you talk to C and V after the election?
I did — they’re also both women of color, so they were definitely my safe space. The four days following, as more things were starting to come out about the rise in hate crimes, just going through all of that and thinking “I can’t do this, I can’t get out of this bed today, this is not gonna work,” they’d be like “no. I know you’re upset, but you have to.” In the same respect, I’m about to move out of my mom’s house for the very first time. I’m excited! And to be on the cusp of that stuff, and then to get this damn election result, I was so mad.
Because of my depression, I take things that don’t turn out the way I’d like them to very hard. I’m a very emotional person. I told V, “I don’t want to fill out apartment applications anymore.” And she said “no, you can’t just roll over and die, that’s not about to happen. You have to do this anyway.” Plus, the morning after the election was when writers and editors from every publication possible started taking submissions about it. And I didn’t contribute anything, just because I couldn’t contribute anything that was a) brand new and b) clear enough for me to express the rage I truly, truly felt. For me, writing is a very political act. At the same time, this was so crushing that I don’t think I could do it in that moment.
“People are like ‘oh, it’s going to be fine.’ No — it’s not going to be fine. This man knows absolutely nothing and keeps appointing people in his cabinet who don’t know shit either. It’s very dangerous.”
The day after the election, I was supposed to go to therapy. My therapist is a white woman. And they called me to say she couldn’t come in, and I breathed this sigh of relief. Because even though we had very similar views, I just didn’t want to talk to her. I wasn’t magically angry at a bunch of white people — I just didn’t want to talk to anyone else about the problems I was going to face as a person in a wheelchair, as a queer person, as a person, as a poor person. I just was not ready.
I know the key to ending ignorance is education, and that’s why I like to talk to people about disability. At the same time, I’m not about to expend this energy on trying to teach you when I know you’re not going to give a fuck. This election was not the election to play with. We were so, so confident this was not gonna happen. But in the back of my brain, as a marginalized person, was “what if this does happen?” As a disabled person who, at this point in my life, relies a lot on the government, that shit is truly terrifying.
How have your friends stepped up in the midst of all that fear?
Growing up, I had the worst self-esteem imaginable. I wasn’t taught that I was valuable or pretty or loved or any of that. That’s still a journey to this day, and I’m 24 years old. It boggles your brain a little bit. To know that I’m loved, it has to constantly be reinforced. I hate saying that out loud, but it’s true. The other day, C came to me and was like “how can I be better supportive of what you’re going through?” And I just said “listen, I need this, this, and this,” and she did it.
I really have to know I am in a space and place where people do give a damn about me. Don’t just pretend you do; don’t just say you’re gonna show up and then when I need you, don’t. My concern is always “how do I know that the people I love, love me as much as I love them?” There’s no accurate way to measure that; you have to just sort of guess. I don’t want to guess. I want to know. So you have to talk yourself into believing you’re fine and okay. And the group and the family that you have cultivated for yourself — because that’s what these closest friends are, they’re my family — you have to believe that they’re in the right space and you’re in the right hands.