I Choose Equality

Yesterday, I read an article in the Huffington Post entitled, “Rachelle Friedman, 'Paralyzed Bride,' Speaks Out: More Than Equality, We Want A Cure”. The title alone made me freeze, and stare at my computer screen for a good five minutes. I don’t know Rachelle Friedman, and I don’t judge or take issue with her desire for a cure for SCIs,  but I am terrified by the suggestion that the desire for a cure should ever come before the desire for equality. I read the article and this uncomfortable feeling that I couldn’t explain seemed to stick with me all day, and then on the way to a meeting I was telling a nondisabled friend about what I read. I was explaining how it made me uncomfortable, I was explaining that I understand that the desire for a cure is complicated to say the least, and I admitted that I have yet to figure out whether I desire a cure for my own disability, and that’s okay. Then I said, it’s not the desire for  a cure that bothers me, because even though I’m ambivalent about it, I understand that  impulse.

There are so many days, the hardest of days, when I wake up and I imagine what life would be like if I could take care of all my own self-care. There are so many days when the pain  rages through my body, that  I imagine what my life would be like without it. I don’t think I wan  a cure, because I don’t think I’m willing to give up the person that I am, and I know that giving up my disability would change me, but that doesn’t mean I don’t understand what it feels like to imagine a life where you don’t hurt, that doesn’t mean I don’t understand what it feels like to imagine a life where medical expenses don’t make up a huge chunk of your expenditures, that doesn’t mean I don’t understand what it feels like to imagine a life where people don’t stare at you as you go down the street and treat you like a second-class citizen. Of course I imagine that, I dream of it, and I would be lying if I said I didn’t, so I’m mused with my friend what was it about this article that made me so uncomfortable, why did I know immediately she wasn’t talking about me?

Then my friend said to me, “there’s something I don’t understand, if you got a cure, when you effectively be gaining equality?”

“Yeah,“  I said quickly, almost on the defensive, “but you would be getting equality because people would see you as ‘normal’ and they would no longer have a reason to treat you differently!” I answered her still not getting her point.

“Yeah,” said my friend, “that’s what I’m saying, even if you don’t want to be cured because you want equality, you’ll get it, so it doesn’t make sense to say you want a cure more than you want equality.”

Suddenly it clicked. I knew why I would never be comfortable with prioritizing a cure over equality.

Cures cannot come before equality because this feeds into the ableist idea that my disability is the problem, and that if I could just get rid of my wheelchair, everything would be fine. Prioritizing  cures over equality allow us to avoid challenging and questioning the societal structures that make disabled life so difficult, even if they are part of the reason we want to be cured. In her article, the author states that one of the reasons she hopes for a cure is because it is so ridiculously expensive to be disabled. I do not disagree with her, the cost of being disabled is astronomical, and it is further complicated by the fact that in order to get any assistance disabled people must remain poor, but I contend that the answer to this is not  cure, but rather justice. Instead of looking for ways to fix ourselves, we must start looking for ways to fix a system that makes living life as a disabled person  akin to second-class  citizenship.

Additionally, cures cannot come before equality because cures are personal, and the quality is universal. We must remember that disability is not one monolithic thing, and that the ability to cure some types of disabilities does not equal the ability to eliminate disability altogether. This means that if we prioritize finding a cure over fighting for  equality, we divide ourselves, by label and by diagnosis. If we prioritize  finding a cure over equality. we create a dichotomy in which those of us in our community who can return to able-bodied  life are seen as better than those of us who cannot. Equality must come first, because equality will change everything. A cure may make it easier for me to get out of bed in the morning, but saying that cures are more important than equality just perpetuates the idea that disability is a problem and not a valid expression of the human experience.

I agree with the author that disabled people should not always have to act heroic, and pretend that disabled life is not difficult, because I promise you, after 22 years of living it, it is. It‘s really hard sometimes, but at least in my experience a huge part of what makes it hard is the idea that my disability somehow makes me  less of a person, and whether we realize it or not, if we contend that cure is more important than equality, we are agreeing with this assertion, and that is something I cannot do.

I do not have a problem with the author’s desire for a cure, I know that the desire for a cure is an extremely complicated issue, I do have a problem with the fact that the author claims to speak for the majority of people with her disability, and the fact that the article presents her in way that makes it feel like she is the voice for the disabled community. It is okay to look for cures, and I fully respect anyone who would choose a cure, if one became available, but  is problematic to think that equality should ever take a backseat to this endeavor. It is highly unlikely that we’ll ever be able cure every disability, and even if we could it is highly unlikely that everyone who is disabled would be able to afford  the cure, or for that matter even want it. In the long run, curing a specific disability is a temporary solution, because one of the things I learned this summer is that the disability community is an equal opportunity community. . Anyone can join us at anytime. Just because we may be able to find cures for certain disabilities, does not mean the disability rights are not important.

Prioritizing cure puts disabled people in a never ending loop of trying to eradicate anything that may make them less than perfectly able-bodied, because they are the problem, and they are what needs to change. Prioritizing equality allows disabled people from all backgrounds and with all types of disabilities to understand themselves as part of the shared experience. Prioritizing equality leads to permanent solutions because if we prioritize equality, if we prioritize justice, then we will always see ourselves as full and equal human beings, regardless of our future ability status.  Given the choice between  cure and equality, I will always choose equality, because cure affects the lives of only those who can afford it, or want it, but equality changes everything. Wanting a cure is not wrong, but it must never outweigh our desire to be treated as full and equal members of society, whether we are disabled or not.  Instead of focusing on curing ourselves, instead of falling back into the old rhetoric of “everything would be better if only I was different,” we must fight against the societal structures that make disabled people feel as though they are less than human.

Disability is a complicated and complex experience, and disabled people make up over 1/5 of the population in the United States alone.  We can’t cure everyone, and we shouldn’t have to, but if we work together, there is something that we can cure. If we work together, we can use equality to help  cure our society of ableism and of pity. If we work together we can help cure society of the frustrating idea that disabled people are either tragic or inspirational figures, we are none of those things, we are people, full human beings, who deserve rights, just as we are, and we must never let our desire for a cure, no matter how great, make us forget that.

I choose equality. I will always choose equality. I will always choose equality because I deserve to be treated with the same respect as everybody else, whether or not they ever find a cure.