I’m Disabled & Sometimes Worry That My Friends Fear Becoming Me

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AA

Listen to this Story

Narrated by Alaina Leary

00:00

I was in middle school the first time a classmate said to me, “I don’t know how you do it. I would kill myself if I were you.” I knew what she meant immediately. I’m autistic, which is a diagnosis I was given as a young child, and I have a genetic connective tissue disorder called Ehlers-Danlos syndrome, which showed up as a variety of obscure symptoms before I was diagnosed at 25.

Due to my disabilities, I was regularly bullied from age 5 to 14. I was often sick with gastrointestinal issues, needed certain accommodations in school, and participated in physical and occupational therapy. My classmates and acquaintances were kind to me, but most of them pitied me. Even if they wouldn’t say it out loud, I felt it.

I am far from the only disabled person who has been told their life is so hard to fathom that death seems like a better alternative. Ableism, a set of beliefs and values that discriminate against disabled people, is rampant in our culture, from the shows and movies we watch to the words we use in conversation — even as children. This has an impact on our interpersonal relationships, including our friendships, whether it comes with good intentions or not.

“I have had many people in my life over the years make comments about being grateful they weren’t in my position,” says Ariel Henley, the author of A Face for Picasso, a young-adult memoir about growing up with Crouzon syndrome. “I have been asked by friends if I thought I would have been pretty if I wasn’t born with a craniofacial condition. Some people told me they could not live the life I live. Like, what’s the alternative?”

I have been asked by friends if I thought I would have been pretty if I wasn’t born with a craniofacial condition. Some people told me they could not live the life I live. Like, what’s the alternative?

Ariel Henley, the author of A Face for Picasso

We are all socialised to view disability as a negative — something to fear happening to our bodies and minds, and something to pity. It can even lead to being afraid to talk to people with visible disabilities because disability is viewed as “other.” Stacy Torres, an assistant professor of sociology at the University of California, San Francisco, explains that within our culture of individualism in the United States, we have “winners” and “losers.” If you don’t fit the strict standards of a winner, which tend to be forms of privilege such as being white and nondisabled, you are automatically a loser.

“This hinders cross-disability friendships,” Torres says, “especially in the younger ages when everyone is hyper concerned about their own self-image.” Some view friendships as a status symbol, particularly when they’re younger, which she says leads to people seeking out those who are more similar to them or even have higher social status due to their privilege. Growing up, I didn’t have very many friendships, and most of my friends at school were the disabled kids from my special education classes, or who also received physical therapy and occupational therapy at school.

Since we live in a culture that discriminates against disabled people, disabled people often experience internalised ableism, which is when disabled folks consciously or unconsciously believe negative messages about disability from society. This can cause us to doubt ourselves and have low self-confidence and self-worth.

“I think societal attitudes make it harder for disabled people to make friendships because we are led to believe that we are not worthy of friendship, that we are not worthy of care or attention or joy or nuance,” says Keah Brown, the creator of the viral hashtag #DisabledAndCute and author of The Pretty One and Sam’s Super Seats. Brown explains that she has needed extra reassurance in her friendships that she holds value and isn’t a burden, because she’s told otherwise by ableist systems in her everyday life. It’s harder to know and believe in your own worth when, for instance, the media says someone who looks like you isn’t beautiful or loveable, or when buildings are designed so that you can’t access them.

I struggled deeply with internalised ableism well into my mid-twenties because I wasn’t actively involved in disability community or disability pride the way I was involved with LGBTQIA+ community and pride as an openly bi person. Although most of my childhood friendships were with fellow disabled kids, by the time I was in college, I had a solid mix of cross-disability friendships. I often chose not to tell my friends about my disabilities, but at the same time, the symptoms of my Ehlers-Danlos syndrome were progressing: It was becoming harder to do the things I used to do, like go out to the club until 3 a.m.

Torres, who herself has an autoimmune condition called Sjögren’s syndrome, says that people with less immediately visible disabilities “may feel disinclined to disclose within their social circles. They may have friendships where people know about this condition but they may not know the full extent. Especially when you’re younger, who wants to be the person putting a damper on plans?”

Being the disabled friend in a nondisabled friendship — or even a nondisabled social circle — means that the burden is often on me to educate my friends about my disabilities, or to explain why certain things might be difficult for me now or in the future. When I started using a cane some of the time, I also thought that I might need to use a wheelchair or walker part-time, too. That turned out not to be the case, but I still remember the fear I felt when I was first telling my friends about my mobility aids. What if they judge me for needing a cane? What if they don’t want to go places with me anymore if I need to use a wheelchair or a walker? Are they going to stop inviting me out because a lot of places aren’t accessible or because a wheelchair won’t fit in their car?

Navigating my friendships with ableism lurking in the background means that I’m always on guard. I’m worried that one day, my friends will stop blaming bars for having a lack of accessible seating and will start blaming me for not being able to stand. I fear they’ll get tired of having to plan around my challenges with driving, instead of looking for public transit options and offering to have me spend the night.

Deep friendships require trust and open communication, even when it’s difficult. I’ve had to navigate some hard conversations with my friends over the years, not just about disability and ableism, but also about grief, fatphobia, racism, acephobia, and socioeconomic status. A part of being human and a good friend is understanding where my friends are coming from, even if it differs from my experience, and trusting them to do the same for me.

The most beautiful thing to come from my cross-disability friendships is the knowledge that my friends care for me and are actively thinking about me, which might look like a friend offering to drive into the city because they know that will be hard for me to do, or taking breaks with me at a concert to sit down when I get tired. Mia Mingus wrote about this phenomenon as access intimacy, and it has led to some of the most thoughtful friendships that I’ve been grateful to experience.

Deep friendships require trust and open communication, even when it’s difficult.

Torres experiences the same thing, and says that for disabled people, we often have to do a little bit of gatekeeping when it comes to our friendships. There is a level of evaluating whether someone can become a close friend or not based on how they react to our disability and disability in general. “I think that people who have disabilities are really resilient and have to be more intentional in their friendships in a way that other people may be able to take for granted,” she says.

This has been true for Ariel Henley, too. “Having a facial difference has led to more authentic friendships and relationships,” says Henley. “It has allowed me to go beyond superficial connections and really get to know people and allow them to get to know me. Because I look different, I have always relied on my personality and who I am as a person, not what I look like.”

I always feel more reassured when, especially early on in a friendship, a friend shows me that they prioritise accessibility, and that they won’t blame me for the ableism we’re undeniably going to face when we spend time together. I love it when my friends show me that this isn’t one-sided, too — just because someone doesn’t have a diagnosed disability doesn’t mean they never need help, or never experience a space that’s hostile to who they are. Nondisabled people who want to be good friends and allies should show with their words and actions that they don’t buy into ableist ideas and will back us up if need be, like jumping in at an event to help find someone to ask about sitting down while waiting in a line.

Keah Brown says that this level of honesty with her friends has “made our friendships that much stronger and brought us that much closer because now we feel like we can really be ourselves. And isn’t that what everybody else is chasing in the world: places and people where we can just be our full selves without apology?”

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Alaina Leary is a program manager at We Need Diverse Books and an affiliated faculty member at Emerson College. Her work has been published in outlets like the New York Times, Good Housekeeping, The Boston Globe Magazine, Teen Vogue, Cosmopolitan, and many more. She lives outside of Boston with her wife, three literary cats, and a rainbow bookshelf.

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