A Cure is Unnecessary to My Happiness

 Please believe me when I say that. 

I DO NOT NEED A CURE FOR EPILEPSY.

Is epilepsy inconvenient? Yes. Is epilepsy frightening? A little bit, I guess. Is epilepsy painful? Sure, but I’m pretty certain the medications, the surgeries, and the VNS that didn’t work have caused me more physical and emotional pain. 

But if I don’t want a cure, what could I possibly want? Why do I even write about epilepsy? This one is simple. I want and desperately need accommodation. I want and desperately need a society where disability isn’t considered a tragedy. I want books in which disability isn’t a metaphor or a theme, in which the disabled body is simply a body—a body signifying nothing more nor less than any other body. I want people not to stare with pity or fear when I have a seizure. I’d also prefer they not avoid eye contact. I would like to be helped when I have a seizure, sure—that’s common sense—but I’d prefer not to be looked down upon or condescended to. I have a brilliant mind. I’m not afraid of saying that. I can tell when people are treating me with condescension rather than compassion.

I want and need businesses, teachers, employers, friends, and families to respect the needs and desires of people with disabilities. I want them to see us as fully human—not the nuisance that’s asking you to put in an elevator or wheelchair ramp and not the inspiration on the Jerry Lewis Telethon. I really, really, really need the Jerry Lewis Telethon and all things like it to go away forever. I need all y’all non-disabled folk to realize that the posters you have with people in wheelchairs or with prosthetic limbs featuring heartrending quotes in horrible fonts are a fooking insult. We aren’t here to motivate you or make you feel better about your lives.

I need public transportation with reasonable hours and fares and bus stops that aren’t on crumbling sidewalks or in inaccessible areas. I need affordable housing. I need affordable medical care. I need specialists who are available more than once a year. I need pain management that isn’t treated with suspicion. 

I need everyone to realize that I love my disabled body and you can stop praying for me now. At the very least you can stop telling me that you’re praying for me. You can believe me when I say things are fine like this.

You can stop thinking I’m exceptional because I’m happy. A lot of people are happy, and the epilepsy was never an obstacle to my happiness. A lot of things related to it were, but those were more based on cultural expectations and my own mistakes about buying into the narratives surrounding disability. I know better now. I’m happy. I’m tough. I know how to get things done.

A cure would probably be nice eventually, but right now I’d really like open minds and hearts. I’d like to see accommodations available to all people with disabilities. I’d like to see things like medical care, affordable housing, and public transportation considered an essential part of the infrastructure of this nation. I’d like my contributions to society to be acknowledged rather than ignored simply because they aren’t part of the Ayn Rand/Fox News necessity checklist. I’d like the voices of people with disabilities to be part of the canon. I’d like our stories to be vital. I’d like it if I didn’t have to be the one making non-disabled folk comfortable with my bodily difference.

I’d like to never again hear an ableist comment. I’d like it if I never had to explain why they’re offensive. It would be so nice if the concept of basic politeness wasn’t met with a sneer and random mumblings about “censorship” or “political correctness run amok.” It would be lovely if (and for true equality it is essential that) civil rights movements considered the rights and needs of people with disabilities, if we weren’t considered secondary to the movements in which we participate, but our rights were just as essential to the success of these movements as those of any other group.

I’d give my first born child to never hear eugenicist comments from people who consider themselves liberals.

All of these things matter more to me than a cure. And all of these things will do more good for PWD and society as a whole than finding a specific cure for a specific disability. Funny how that works.

X-Posted from my tumblr: http://epileptiwhatever.tumblr.com/post/105019504453/a-cure-is-unnecessary-to-my-happiness