I just finished reading a horrible book. I did finish it, though. It was horrible because it was a book in which the disabled, teenage protagonist waxed on for paragraphs about all of her fantasies of being able-bodied, her hatred for her wheelchair despite it being customized to her specific needs and painted her favorite color, and the sainthood of her parents and teachers for all they did to take care of her. I finished it because I had asked for recommendations of good young adult novels with disabled protagonists, since I’m currently trying to write one, and I quickly realized that this one was going to be a good example of what not to do.

It should come as no surprise to my fellow disabled people that this book was not written by a disabled author. It did, however, sit prominently on the desk of one of my former co-workers in a disability organization I used to work for. She spoke often of how great she thought it was, how nice it was to get a glimpse into the minds of “our people” – the disabled people our organization served. Reading the book now, I’m horrified at how my (abled) colleague must have imagined the disabled experience that both myself and the people we worked with live every day – as one of self-loathing, humility, and gratitude to people like her for putting up with us.

It’s easy for me to find comparisons to another book that is actually among my own favorites and centered around a similar young character. There are two major differences, though: the narrator is sarcastic, sharply observant, and invested in fighting back against the ableist stereotypes that create barriers for her and her friends; and the woman who wrote it is disabled herself.

When abled people write about us, they imagine how they would feel if they lost the ability to do the things they love. They write us hating our adaptive equipment and our disabled lives and bodies, desperately dreaming of being like them, because if they suddenly became us, all they would want is their old lives and their old selves back. Too often, they don’t know how to write us as whole people exactly as we are; they can’t imagine us feeling pride or love for ourselves or for the things that help us live (things like mobility aids, sensory equipment, or speech technology). They write us, but they don’t tell our stories. They tell their stories in our bodies.

More Radical Reads: No, I’m Not Wheelchair Bound

In order to have accurate representation of disabled people in your content – and avoid doing harm to us and our communities – you have to involve us in the process of creating it. Too often I see movies and shows that feature disabled characters who were written by non-disabled writers and played by non-disabled actors. Without our input on what our lives are like, the most prominent mainstream narratives about us overwhelmingly get it wrong. This is dangerous, not only because it spreads ideas about us that are false and sometimes harmful, leading to more misunderstandings about us, but because it’s a perpetuating cycle. One false narrative leads to another; a new creator looking to tell a story about a disabled person will look not to an actual disabled person but to the last story told about us without consulting us. Eventually, we’re erased from our own stories altogether.

The thing is, this isn’t only a problem in the media. That’s where a lot of people in other areas of the world get their ideas about how the communities they aren’t a part of live their lives, so when those people are misrepresented, the people looking to that media for understanding come away with the wrong ideas about the ones they’re trying to understand. Depending on the field that person operates in, this can range from simply annoying to posing an actual threat.

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My coworker was a person whose livelihood was advocating for disabled people. Her opinion on how disabled people think and feel and move through the world matters, because it affects the way she’s going to treat the people she’s supposed to be helping. If she assumes that their primary goal is always to be as much like abled people as possible, rather than to make the world around them accessible to them as is, she’s going to approach advocacy in a way that may not be very helpful and may in fact do harm. I believe the narratives being spread around about self-hating disabled people are directly responsible for the number of people tasked with supporting and representing us who think the best way to do that is to try to bend us to fit into this inaccessible world rather than bend the world to be accommodating to us.

It spreads to doctors who think it’s better for us to be in pain and struggling but walking than using wheelchairs or other mobility aids; to teachers and therapists who think forcing neurodivergent kids to give up comfortable behaviors for them (like stimming or avoiding eye contact) through harsh “training” methods in order to make them behave in a way that makes neurotypical people comfortable instead is healthy for them; to policymakers who think that if they make things too easy for us, we’ll just get lazy and stop trying to “overcome” our disabilities. When the stories they see are centered around determination to do exactly what abled people do, in exactly the same way, they start to internalize the idea that if we don’t want that, the problem is with us. If we are happiest living our lives as disabled people without exhausting all of our energy by trying harder to blend in, leaving ourselves free to concentrate on doing the things that we love and that are important to us in our own ways, we are accepting defeat and don’t deserve to be celebrated.

This is why we need more disabled people writing books, making movies and playing the characters in them, and otherwise directing the stories that are told about us in the media, but it’s also why we’re needed in all of these other aspects of our world. We need disabled teachers who believe in creating a learning environment that makes kids feel safe and reaching them in the way that works for them. Disabled doctors who advocate for mobility aids, pain medication, or whatever tools they have at their disposal that would make life easier and more comfortable for them, because they understand that disabled people deserve easy and comfortable lives too and these things aren’t there only for people who have no other option. Disabled politicians who actively fight for disabled people’s rights, for accessibility in every place we might want to go, and for our own concerns to be heard rather than others speaking for us and, too often, assuming that our wishes are what would be most convenient for them. We need disabled people working as disability advocates so that the people seeking out stories to help and inspire disabled people will know where to look for the ones that actually center them. And we need to create a world where all of these fields are as open to us as to abled people, if not more so, so that we can start building spaces for us that are actually for us.

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