An article recently published by Rachelle Friedman on the Huffington Post boldly asserts in the title: “’Paralyzed Bride,’ Speaks Out: More Than Equality, We Want A Cure.” Rachelle discusses experiences with pain and financial strain, two major issues that face many disabled people, as reasons why finding a cure is urgent. Even though she is technically only talking about people who have become disabled due to an injury, the article is written in such a way that it implies every disabled person should be focused on cures over equal treatment. She goes so far as to claim that 99% of people with spinal cord injury (SCI) want a cure over equal treatment. While I respect that the strong desire for a cure is Rachelle’s personal view, it concerns me that she writes as though she speaks for nearly all disabled people. While disabled people do share certain lived experiences, everyone is unique, and there is no one right answer to how to feel about a cure.
As much as I value the idea of a unified disability community, I think in cases such as wanting a cure, there must be a distinction between the immense variations of disability experiences. I can understand why someone who was injured would want to return to his or her previous state of abilities, but I cannot claim my views on cures to match those of people who became disabled later on in life, because as I said in a previous post on the complexities of curing disability, I have never known any differently. My view is quite different from Rachelle’s because I was born with my disability. However, I also cannot claim that my views are the same as 99% of people who actually were born with a disability. Although nearly every disabled person I know would not want to be cured, I don’t know every single disabled person in the world. And I definitely don’t know 99% of them. Therefore, I can’t say my feelings and the feelings of disabled people I know represent everyone’s sentiments.
I want to clarify that I agree with Rachelle’s point about wanting to ease disability-related struggles. She makes an excellent argument by noting some of the societal issues that need to be solved for disabled people: “the need for better medical care, better health coverage, funding for medical equipment and better accessibility.” Despite the fact that Rachelle and I have had very different experiences with our disabilities, I can relate to her in that I experience pain almost daily, I face accessibility obstacles almost constantly, and my family has incurred countless extra expenses. Would I change this if I could? Yes. But is painting a picture of suffering and desperation for a cure an accurate description of life for every disabled person? I don’t believe so.
I’m not naïve. I know I haven’t gone through a traumatic accident, but I do realize that becoming injured is scary and life changing in enormously difficult ways. I’ve even had an experience similar to lots of people who injure their spinal cords. In 2009, I had major surgery to correct an abnormal curvature in my spinal cord and had to wear a halo stabilization device for four months while it healed. After the halo was removed, I had to work through intense pain to re-train myself to do many things I used to do with ease. So, though I cannot put myself in Rachelle’s wheelchair, I can relate.
I feel her argument needs to be re-framed so as not to downplay how imperative equality is and so as not make it seem that all disabled people are living the “harsh realities” of distress and misery. It is true that emotional pleas are exactly what motivate society to join a cause for a cure, but I disagree with Rachelle’s concern that the fight for equality overshadows the fight for a cure. Indeed, the media often portrays disabled people as heroes who overcome tragedy (a theme that I find to be quite stereotypical), but there are tons of (usually equally stereotypical) portrayals of disabled people as having a “severely negative…quality of life.” I believe that no matter how many people share Rachelle’s views, the extreme desire for a cure should not outweigh the need for equal access and equal treatment.
A cure could take years to find, no matter how much money is raised. Money can only do so much to speed up research processes. I know this firsthand because research has been done to determine the genetic origin of my disability, Larsen syndrome, and I’m relatively sure that in my lifetime, scientists won’t find a “cure.” In the mean time, and always, it must be a priority for all disabled people to be treated equally. We should not have to wait for equal treatment. It requires no research; there is no science behind it. Regardless of how disability impacts our lives, we all deserve equality and respect.
(Remember, this is just an opinion piece. I’m glad to hear all opinions in response, but please be respectful and give constructive feedback.)
