I have a rare condition, and the people I most often interact with are parents of disabled kids (don't you even dare come at me with an argument about person-first language), and it seems to be jarring to them that I openly say that I don't want a cure for my autoimmune condition. So let's talk about why I don't want a cure and what I do want:
"Don't you want your life to be more than your disability?
I can't separate me from my experiences with my disability. My friends will tell you that I have taken on disability activism as somewhat of a brand, and I love that about me. It allows me to be present for people who are newly diagnosed and to work for systemic change in the way that we interact with those with physical and mental disabilities.
"Wouldn't a cure be helpful?"
The short answer to this is yes, on my bad days, I would love for there to be a cure for my mental and physical ailments, but it is unrealistic to believe that someday there will be a therapy or medication cocktail that cures everything. Perpetuating the narrative that we should always be searching for a cure is actually harmful, especially when it comes to the adult disabled community. When money and time are focused on finding a cure, we are left living with symptoms. We need to start focusing on quality of life for us and our children. What that means to you will be different based on who I am. But here's what it means to me: It means fighting against systemic ableism, finding treatments (both prescription and over the counter) that can help there to be more "good" days than "bad" days, and it means spending time with people I love who don't want to fix me or give me suggestions about how improving my gut health or meditating would cure my disability.
Why don't you want to be fixed?"
The answer to this more crass question (that I have actually been asked) is quite similar to the first. I am not broken in any way shape or form. I'm not a discounted product. I have a lovely and full life, good days, bad days, and everything in between. I am not constantly suffering, and when we get into this mentality, it is very easy for us to end up at the eugenicists saying that it is okay to euthanize disabled children because you are "putting them out of their misery." This is not even getting into the fact that the majority of these questions and conversations are instigated by the parents of young disabled kids, not by disabled people who are speaking for themselves, and even if they think that they know their kid backwards and forwards, it is still completely inappropriate to speak over those who are trying to speak for themselves.
What do we want? Now, of course, I cannot speak for the entire disabled community and I would never pretend to, but as far as I know, we want better social services; we want affordable access to healthcare; we want marriage equality; we want doctors to believe us when we are in pain. We may want treatment, but more than any sort of cure, we just want to be treated like humans with needs and wants just like anyone else.
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