Meine Behinderung macht meinen Freundinnen Angst und das tut weh. Please note that the translation is literal and may not capture the exact tone and style of the original text.

Meine Beeinträchtigung beunruhigt meine Freundinnen und das verletzt mich zutiefst.

Ich hatte gerade mit der Oberschule angefangen, als eine Mitschülerin zu mir meinte: „Ich weiß nicht, wie du das schaffst. Wenn ich du wäre, würde ich mich umbringen.“ Ich wusste direkt, was sie damit meinte. Ich habe Autismus – eine Diagnose, die ich schon als junges Kind bekam – und eine genetische Bindegewebserkrankung namens Ehlers-Danlos-Syndrom, deren schleierhafte Symptome sich schon lange vor meiner Diagnose mit 25 zeigten.

Aufgrund meiner Behinderungen wurde ich zwischen meinem 5. und 14. Lebensjahr regelmäßig gemobbt. Ich blieb wegen Magen-Darm-Beschwerden oft krank zu Hause, hatte in der Schule bestimmte Sonderrechte und war dauernd bei der Physio- und Ergotherapie. Die meisten Mitschüler:innen und Bekannten waren zwar lieb zu mir, aber die meisten von ihnen bemitleideten mich auch. Selbst wenn sie mir das nie ins Gesicht sagten, spürte ich es doch.

Ich bin längst nicht die einzige Person mit einer Behinderung, der schon mal gesagt wurde, ihr Leben sei für andere so schwer vorstellbar, dass der Tod wie die bessere Option klinge. Unsere Gesellschaft ist zutiefst ableistisch – also diskriminierend gegenüber Menschen mit Behinderungen –, und das zeigt sich unter anderem in den Serien und Filmen, die wir schauen, bis hin zu Worten, die wir im Gespräch verwenden, selbst als Kinder. Das beeinflusst unsere zwischenmenschlichen Beziehungen, inklusive unserer Freundschaften, ganz unabhängig davon, ob es diese Leute eigentlich gut mit uns meinen oder nicht.

„Ich habe über die Jahre hinweg schon oft von Leuten gesagt bekommen, dass sie dankbar dafür seien, nicht in meiner Situation zu sein“, erzählt Ariel Henley, die Autorin von A Face for Picasso, in dem sie über ihre Jugend mit dem Crouzon-Syndrom schreibt. „Freund:innen haben mich schon gefragt, ob ich glaube, ich wäre hübsch geworden, wenn ich nicht mit einer Schädelerkrankung zur Welt gekommen wäre. Manche haben mir gesagt, sie könnten niemals mein Leben führen. Aber was ist denn die Alternative?“

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Uns allen wird von der Gesellschaft vermittelt, eine Behinderung als etwas Negatives zu betrachten – etwas, bei dem wir uns davor fürchten sollten, es könnte unsere Körper, unseren Geist betreffen. Und etwas, das wir bemitleiden sollten. Das kann sogar zu einer Angst davor führen, überhaupt mit Menschen mit sichtbaren Behinderungen zu sprechen, weil eine Behinderung als „anders“ gilt. Stacey Torres, Professorin für Soziologie an der University of California in San Francisco, erklärt, dass wir in unserer individualistischen Kultur klare „Gewinner:innen“ und „Verlierer:innen“ haben. Wenn du den strikten Standards der „Gewinner:innen“ nicht entsprichst – zu denen meist Privilegien wie weiße Haut oder fehlende Behinderungen zählen –, giltst du automatisch als „Verlierer:in“.

“This affects relationships and friendships between people with and without disabilities,” says Torres, “especially at a young age when everyone is still completely preoccupied with their own self-image.” Some people also view friendships as a status symbol – especially during youth – which leads them to seek friends who are similar to them or have an even higher social status due to their privileges. As a child and teenager, I didn’t have many friendships because of this, and most of my friends were the children with disabilities from my special education or physiotherapy/occupational therapy.

Because we live in a culture that discriminates against people with disabilities, many of them develop internalized ableism and consciously or unconsciously believe the negative messaging about disabilities that society conveys to them. This can lead to self-doubt, a weak self-esteem, and self-worth.

“I think these societal attitudes make it more difficult for people with disabilities to form friendships because we are told that we are not worthy of these friendships and do not deserve love, attention, or joy,” says Keah Brown, creator of the viral hashtag #DisabledAndCute and author of The Pretty One and Sam’s Super Seats. Brown explains that because of this, she often had to seek reassurance from her friends that she was worthy and not a burden because the ableist systems of her daily life told her otherwise. It is harder to know your own worth and trust it when, for example, the media claims that someone like you is not beautiful or lovable, or when buildings are designed in a way that you can’t even enter them.

Until my mid-twenties, I had major problems with my internalized ableism because I did not actively participate in the community of disabled people or their pride movement; at least not as actively as I do as an openly bisexual woman in the LGBTQIA+ community. Although most of my childhood friends also had disabilities, at the beginning of my college years, I also had various friendships with people without disabilities. Often, I decided not to tell them anything about mine; at the same time, the symptoms of my Ehlers-Danlos syndrome continued to worsen: It became increasingly difficult for me to do things that I had previously managed without difficulty – like going to a club until 3 a.m.

Torres, who herself has an autoimmune disease called Sjögren’s syndrome, believes that people with less visible disabilities “prefer to keep them secret within their environment. They may also have friends who know about them but don’t know how far the disability really goes. Especially when you are younger, you don’t want to be the person who dampens everyone’s plans.”

Being the person with a disability in a non-disabled friendship – or even just in a non-disabled circle of friends – often means that it is up to me to educate my friends about my disabilities or explain to them why some things might be difficult for me now or in the future. When I started using a cane occasionally, I believed that I might need a wheelchair or a walker occasionally in the long run. That turned out not to be necessary, but I still remember the fear I felt when I first told my friends about my mobility aid. What if they judge me for needing a cane? What if they no longer want to go anywhere with me if I need a wheelchair or a walker? Will they stop inviting me to meetups because many places are not disability-friendly, or because a wheelchair doesn’t fit in their car?

Because ableism always lurks in the background of my friendships, I’m constantly on edge: I’m afraid that my friends will eventually stop blaming the bars that don’t offer accessible seating and instead blame me because I can’t stand. I’m afraid that they will eventually get tired of searching for bus and train connections with me and offering me a place to stay, and instead just prefer to drive, which is sometimes difficult for me.

Deep friendships require trust and open communication, even in difficult situations. Over the years, I have had some uncomfortable conversations with my friends – not just about disabilities and ableism, but also about grief, fatphobia, racism, acephobia (discrimination against asexual people), and finances. It is part of being human and being a friend to understand the perspective of my friends, even when it differs from mine – and to trust that they will do the same for me.

The most beautiful thing that has come from my friendships with people without disabilities is the knowledge that I truly matter to my friends and that they actively think of me. This is evidenced, for example, when a friend offers to drive me to the city because she knows it’s difficult for me, or when a friend takes a break with me at a concert so I can sit down and rest. Mia Mingus has already written about this phenomenon, which she calls “access intimacy”: the feeling that one’s disability-related needs are understood and taken into account by another person without words. I know this feeling from my most caring friendships, and I am incredibly grateful for it.

Torres knows this too. She says that people with disabilities need to practice a bit of “gatekeeping” when it comes to their friendships – we can’t just let “anyone in,” so to speak. Before a deep friendship can develop, we have to consider how this person reacts to our disabilities or disabilities in general. “I believe that people with disabilities need to approach their friendships more intentionally. People without disabilities often take these friendships for granted,” she says.

This also aligns with Ariel Henley’s experience. “Because my face looks different, I have formed more authentic friendships and relationships,” she says. “It has allowed me to go beyond superficial connections and truly get to know people – and vice versa. Because I look different, I have always relied on my personality and what makes me as a person. Not on my appearance.”

I always find it reassuring when a person – especially at the beginning of a friendship – shows me that they prioritize my accessibility and don’t hold me responsible for the ableism that we definitely encounter during our meetings. I love it when my friends show me that it’s not one-sided either: just because someone doesn’t have a diagnosed disability doesn’t mean that person never needs help or never experiences hostility. People without disabilities who want to be good friends and supporters should prove with their words and actions that they reject ableist prejudices and, if necessary, support us – for example, by looking for a seat at an event while we’re standing in line.

Keah Brown told the story, that level of honesty within our friendships has “strengthened our relationships and brought us closer together because we feel like we can truly be ourselves in it. And isn’t that exactly what we all want in this world: spaces where we can be fully and unapologetically ourselves?”

Alaina Leary is a program manager at We Need Diverse Books and a faculty member at Emerson College. Her writing has been published in various outlets, including the New York Times, Good Housekeeping, Boston Globe Magazine, Teen Vogue, and Cosmopolitan. She lives near Boston, USA, with her wife, three cats, and a rainbow-colored bookshelf.

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