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  • Writer's pictureyannick-robin eike mirko

when faking a rare disease wins you a Tony Award

It’s time for people to start realizing that the final boss of bigotry is ableism.


So…the Tony Awards were this past weekend.


I think it’s rather disrespectful, for a show (and its leading actor) to get awarded for faking the experience of having a rare disease, while talented people with rare diseases experience ableism and overwhelming judgement from the industry, being told things like their disabilities are too “physically inconsistent” for theatre.


It makes you think about how people see disabilities, and how people with disabilities can be drawn up a specific way in people’s minds, leading them to think you are being disabled the wrong way, because this isn’t how they pictured working with you would be. They didn’t expect you to be serious about the need for physical safety, they didn’t expect an ebb and flow and symptoms. If you aren’t the right kind of disabled, we don’t want you here.


Seeing the Tony Awards congratulate Kimberly Akimbo for further perpetuating false expectations in societies minds on the disabled and rare disease experiences, for not casting or involving anyone with a real rare disease, for using an older - non rare - actor instead of hiring someone with the disease in question meant to age someone early, for not naming the disease in the show in order to build room for sensationalizing and falsifying the accuracy of the experience further making it difficult for people truly living with a rare disease to be legitimized when their experiences don’t mirror what you saw on stage, for neglecting to have taste or mindfulness for how to help organizations dealing with rare diseases and failing to partner with organizations to get them attention and aid through the success of your show, for taking an opportunity to make a difference and running with a money-grabber version instead. For so many things. Seeing them win a Tony for best musical and best actor, was one of the worst moments of my life.


I don’t do all of this behind the scenes work so that people pretending to have a rare disease can win. I do this so people with rare diseases can be on stage, in an equitable and accurate way. This show makes me want to give up on everything. It’s such a set back for disability justice in theatre, not that I expect anyone to care because they were trained by the show to love continuing to see things like rare disease or disability become a plot line to gawk at without realizing it’s ableist as well as exclusionary. The more you represent things in a way that is untrue on stage or screen, the more ableism prevails in society. We as disabled and rare people become forced to confine to the behaviors and actions of what little representation they’ve been given, and it’s a terrifying thing.


Some examples that relate to my direct experiences on how lack of safe representation challenges my ability to be safe in real life: Did you know, that I - as an ambulatory wheelchair user - get nervous anytime I have to adjust in my seat or stand up because the subway platform doesn’t line up with the train car and I have to get off, or literally any other time I’m out of the house, I’m scared when I have to stand after being in the chair? Did you know, that I have friends who are afraid of going out anymore because people have physically assaulted them because there was no way their shoes could be dirty when they were sitting in a wheelchair, claiming this person was using a fake mobility aid to “get ahead” in the world? As if being disabled meant anything to society and how it was gonna treat you besides a bad thing. The citizens of New York City, which I would like to respect and consider smart adults, can’t even collectively understand that sitting in a wheelchair doesn’t mean your legs are paralyzed, and doesn’t mean you can’t still stand or walk for short periods of time.


If people can’t even wrap their heads around a mobility aid, what makes you think they are going to leave a theatre with an inaccurate portrayal of a rare disease and suddenly become non-violent members of society to people like that?

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If you are listening to me right now, know that the best thing we can do for people is keep an open mind. Things like Kimberly Akimbo do not speak to the real experience, only people with lived experience can speak on these things, and no experience of two people with the same rare disease is the same. Please, please, be a safe person for disabled people and for people with rare diseases. We need true ally ship, now more than ever.

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