About two years ago, I wrote a misguided article with the University of Minnesota Women’s Center blog about Rachel Dolezal. If you don’t remember, Rachel Dolezal pretended to be a black woman for the majority of her adult life. She taught at Howard University and was the leader of the NAACP chapter in Spokane, Washington when everyone found out that she was actually white. The article I wrote was basically more or less talking about the process of passing and, without being asked, interpreting people’s reactions to Rachel Dolezal’s actions. In the midst of this analysis, I basically excused Rachel by saying she was mentally ill. A commenter rightfully pointed out that I was being racist; I didn’t understand why I was being racist and apologized on behalf of myself. I gaslit this woman, saying that, because I didn’t intend to be racist, then I wasn’t being racist.
It was around this time also that my journey with my epilepsy was taking a new turn. I was still in my pre-pride phase, and I was still looking for ways to overcome a disability through erasing its existence. As I was becoming aware of glaring inequalities that I faced due to my epilepsy, I utilized the Women’s Center online space to create a voice for myself and have others acknowledge it.
Around the same time that I had written the Rachel Dolezal article, an old story began circulating the internet about a woman named Jewel Shuping from North Carolina. Jewel, with the help of her therapist, poured drain cleaner into her eyes and refused to seek medical treatment, blinding herself permanently. She did this because she believed that she was actually disabled and that her able body prevented her from being who she truly was.
Jewel is not alone in her story. There are several instances of people chopping off their limbs in order to achieve a particular aesthetic. There are people who see the lives of disabled individuals as attractive and want that life. Many people like Jewel are diagnosed with Body Identity Integrity Disorder, a psychological phenomenon in which the afflicted may remove their limbs or alter parts of their body because they do not believe that their able bodies are their natural bodies. In choosing to disable themselves, they’ve been identified as “transabled,” meaning to mirror the language of the transgendered community.
As someone who has a disability, the concept of “transability” makes me viscerally sick. When I hear these stories, I don’t want to welcome a self-identified “transable” person, regardless of the individual’s suffering. When I hear these stories, I think that people who claim to be “transabled” treat disability as something trivial and completely superficial. When you make these grand adjustments to your body and call them “body mods,” you ignore the entire systemic structure that debilitates and demeans the lived experiences of people with disabilities worldwide. Furthermore, you are attempting to achieve something which is off-limits to you. By doing this, you are reinscribing the reigning societal misconceptions about people with disabilities, which is that having a disability is a choice.
When I had learned of Jewel’s actions, I was fucking livid. I thought, and still think, how dare this woman take away the pain many of my visually impaired colleagues and friends, and, by extension, the collective pain of the disabled community? How dare she make this narrative hers when it is clearly not her pain to own? How dare she take away from the lived experience of having a disability and make this spectacle of herself? I remember thinking about the consequences of this woman’s actions: what impact would it have on the disabled community? How much more difficult will it be for people to believe my experience as an epileptic? What will happen to the current state of medical care for disabled individuals if people continue to treat disability so lightly?
I was mad at this woman for about a year, entirely apart from race, when it dawned on me: those were the exact same concerns regarding my interference with race that the commenter had tried to tell me about my Rachel Dolezal article.
I understand, now, why the framework of that article and my interaction with this commenter were both racist, but I didn’t learn that the entire interaction was racist by believing and listening to this woman of color like I should have. Instead, I learned this because the same logic was being applied to something that directly affected me.
Like this woman and others who support Rachel Dolezal’s “transition,” I had neglected the voices of black Americans by writing that article and then defending it when called out. I was supporting this white woman’s “transition” into a black woman because my internalized racism allowed me to justify my actions and make excuses for others. In the process, I also reaffirmed ableism by arguing that Rachel was “mentally ill.” I disregarded the lived experience of people with mental disabilities by saying that this woman chose to be black and appropriated from black culture because she is “mentally unwell” when, in reality, she is racist.
So, what’s the point to all of this? The point is that I can’t talk about what it’s like to cope with a disability without talking about the larger societal structure of that disorder. More importantly, I could not write an article about “transablism” while simultaneously ignoring my culpability in the conversations surrounding “transracialism.” When thinking about “transablism,” I still question myself and wonder: am I repeating my mistakes from that Rachel Dolezal article? Am I denying bodily freedom to people with Body Integrity Identity Disorder? Will this diagnosis become obsolete? Will it become a part of our understanding as a “choice?”
These are hard questions that I can’t answer, and I’m not entirely sure it’s my job to ask them. What I’ve learned from Jewel and others like her, however, is that whether or not she is disabled—or even whether or not she believes that she is disabled—is not the point. The point is that treating disability as purely a choice devalues the experience of living with a disability. Jewel did not just blind herself; like Rachel Dolezal, Jewel Shuping chose to appropriate the culture of a wide and fragmenting community that she otherwise had no personal stake in. By disabling herself, Jewel told the world in no uncertain terms that disability could be a choice.