Why I Write about Disability
Recently, actor Gregg Mozgala visited Whitman's campus for a screening of the documentary film, Enter the Faun, which details his collaborative journey with choreographer, Tamar Rogoff, from actor to dancer. Mozgala has cerebral palsy and the film in part shows the amazing effects of a somatic education on Mozgala's life of movement and, quite literally, on his brain. This could place the film within a pretty common disability narrative of overcoming, and in part, it does. However, the film is also more broadly about questions of the interaction between somatics and brain function, between impairment and ability, and between disability and identity.
I don't want to review the film here. I think you should see it and think it through for yourself.
I want to address a question that comes up whenever we have visitors to campus who write, talk, and perform about disability. Why do you write about disability? What's your interest? The underlying assumption here is that whoever is interested in disability as a scholar or an activist must have a personal connection to disability that spurs their involvement. On the one hand, I'd argue we all have this connection, since all of us are only ever (if ever) temporarily able-bodied. On the other hand this line of questioning highlights a troubling assumption of epistemic privilege: in order to speak about disability one must know it personally. This is problematic because it gives those who have no connection to disability a "get out of jail free" card. They don't need to be involved. They don't need to speak up. They needn't adjust their syllabi.
And yet, many of us do have a personal connection to disability.
My connections are myriad, as I'm sure are many others'. I have no impairment that affects my daily living currently. I write about disability and through a feminist disability lens because I consider ableism to be a foundational prejudice within academia and writing, and generally within society. Disability has been a framework for disempowering many different groups of people: American Indians, African Americans, women, immigrants, . . . the list goes on. This statement is not meant to belittle the impairments many who identify as disabled deal with on a daily basis in their material lives. I do mean to suggest that we all have a stake in disability rhetoric.
Let me list some of the ways in which disability has intersected with my life; chances are it has also intersected with many of your's. Mental health issues have always been a part of my life and I have always known and loved people with mental illnesses. My great aunt Dorothy was schizophrenic and mentally retarded; her sister, my grandmother, was her primary caretaker her whole life and I grew up in their house. Later in Aunt Dorothy's life, she suffered a paralyzing injury and was bedridden. Perhaps this connection spurred my own parents' senses of obligation or compassion. My mother worked for many years in the state mental institution as an Occupational Therapy Assistant, and I visited her place of work and attended staff and client picnics regularly. My father worked for a period of time in a group home for adults who were independent enough to live away from family, but not quite independent enough to live without some full time support. Their mental health issues represented a full spectrum of highly functioning disorders. I remember fondly playing "Cooties," the actual plastic game with bugs you put together, with some of the men who lived there when I was a child.
My immediate family has also suffered from mood disorders and addiction. I struggle with depression and anxiety, myself. My middle son has ADHD and anxiety. ADHD is one of those disorders I hate bringing up to others. I don't want to hear from well-meaning friends how over-diagnosed this disorder is and how as a society we need to let kids be kids, and maybe it's society that is sick. It's not that I don't sometimes think these thoughts, but there is an implicit judgment of my parenting and of my son. My son takes ADHD medication and it has made a huge difference in his life and in his self-esteem. His disorder is real and has real neurological effects on his day to day functioning. This is not to say that ADHD is a fixed identity for my son, but it is an impairment that sometimes affects him quite seriously, especially coupled with anxiety. He is not merely energetic and imaginative (though he is these things): he has serious trouble with executive functioning and he experiences anxiety that interferes with his relationships, not to mention impulsivity that sometimes alienates others.
Psychological disabilities are a particularly difficult breed because they are largely invisible to outsiders and yet they have profound impact on those dealing with them and on their loved ones.
I don't know if I would have grown interested in the field of disability rhetoric without my particular history, but I won't negate that possibility. Disability frames everything. It also informs my work as the Director of the Center for Writing and Speaking. I have heard faculty and students disparage the idea of using the writing center as a "crutch," at which I wince. The ableism is so prevalent it seems natural and unproblematic. A student in my training course once said he thought the goal of the writing center should be that eventually people would no longer need the writing center.
Why is self-sufficiency the model of the productive and effective writer? This prejudice keeps people who could benefit from coming to writing centers away. We all are radically NOT self-sufficient. Self-sufficiency is an ableist (and imperialist-capitalist) myth. My goal in writing center work is for people to want to keep coming back, working together to grow as writers. There is no end point of self-sufficiency. This does not mean that we don't make changes in our writing practice (I do not write "progress," because progress must be toward something), we acquire new tactics, but it does mean that we all continually use a variety of "crutches," and that is okay and necessary.
Gregg, the actor-dancer in Enter the Faun, still has cerebral palsy. Somatic work has educated the synapses in his brain and has transformed his movement in many ways that are not static, which in turn affects his identity (also not static). But there is not an end point of progress toward some ideal body goal, and there should not be such an end point in writing.