Tomorrow I am going to participate in the Salt Lake City Reelabilities Film Festival, a showcase and discussion forum “to bring together the community to promote awareness and appreciation of the lives, stories and artistic expressions of people with different abilities.” VideoWest, a Utah-based film-making organization led by Doug Fabrizio, will kick off the film festival by showing an hour’s worth of films about people with various disabilities—among them a film of me and my budding dementia. After the film showing, I will participate on a panel with VideoWest producer Elaine Clark, several of the filmmakers, as well as other people featured in the films. This is the first time I will be presented in public as “a person with a disability,” together with other people who have disabilities. Since I agreed to participate about two weeks ago, I have felt uncomfortable with the ethics of presenting myself and speaking as “a person with disabilities.” Most of the people featured in the selected films are physically or cognitively impaired in ways more challenging than my still maturing dementia. In this context, I can’t help but feel like an impersonator. Referring to a term used in the disability community and in the field of disability studies, I feel like as if I am donning crip drag.
Crip drag is defined by a disabled blogger known as “PatientC” as “the act of behaving as if one has a disability that one, in fact, doesn’t have. Usually this is done by TAB (temporarily able bodied person), but it can be done by anyone. A person with a disability cannot crip face their own disability, but can crip face one that is not theirs….Crip drag is always a display of privilege (a right or benefit that is given to some people and not to others) and is always ableist/disableist.” (“Ableist” and “disableist” mean the same thing: discriminatory, oppressive, or abusive behavior arising from the belief that disabled people are inferior to others.)
What might “crip drag” look like? An example is Lady Gaga’s acquisition—a few years ago—of a 24-karat gold-plated wheelchair to use during her recovery after hip surgery. Unlike most of us “who would call our insurance provider to request a standard-issue wheelchair or pair of crutches,” Lady Gaga had “her stylist contact jewelry designer Ken Borochov, of the label Mordekai, to design the chair with only a week’s notice.” (The Daily Beast.) Borochov created the chair using manufacturers around the country, finishing it only hours before Lady Gaga was to venture out of seclusion. “The 1.5 ounces of gold were plated onto the chair ‘at a customizing car factory that does hot rods and stuff….[It features] a tufted leather seat inspired by leather jackets [and] has a removable canopy to keep Lady Gaga guarded from the sun.’” Lady Gaga’s shameless appropriation—for what she knew would be only a few weeks—of what to people who cannot walk “is not a prop, [but] our legs,” is an insensitive and egregious case of crip drag; behavior, in other words, that suggests she is suffering the physical hardship of permanent disability. The hardship of recovering from surgery surely pales in comparison to the daily endurance people with long-term disabilities face permanently. Lady Gaga, in fact, was using her temporary disability for attention, increased fame, and even laughs.
What might “crip drag” look like for someone like me who, in a neuropsychological sense, am disabled but not yet markedly so? During a neuropsychogical test earlier this year (my 3rd test over a period of 5 years), I was for the first time found to be in a stage of microvascular disease that has the word “dementia” in its title. My previous two diagnoses were “mild cognitive impairment.” I am now officially in the 3rd out of 7 stages of dementia. Stage 3 is known as “mild dementia.” Here is a description of Stage 3: Patients are “usually able to do basic activities of daily living, which means they can perform their daily routines, such as getting up, going to the bathroom, getting dressed, and so on, without too much difficulty. Symptoms of dementia at this stage may include:
- Some forgetfulness and memory loss
- Losing items without being able to retrace steps to find them
- Trouble managing finances, such as balancing a checkbook
- Confusion while driving
- Trouble managing medications
- Loss of concentration”
In a way, this diagnosis was depressing. If I am already perceiving myself to have a hard time and I am only in Stage 3, how will I cope with my inevitable decline over 4 more states? In another way, the diagnosis was guilt-provoking: since I could still do so much, am I not “faking” dementia? How do I look to other people?
During interactions with people with whom I have only fleeting contact, my loss of brain power is not obvious, and accordingly they usually do not perceive something “off” about my intellect and behavior. In contrast, people with whom I have daily or regular contact constantly see my slips and see them getting worse. In my own mind, I am of course almost constantly aware of how much harder my days have become than in the bulk of my life before the onset of my dementia. However, I can still do many of the important things that I have associated with my identity through my life, including writing. It is because of these remaining strengths that I sometimes feel as though I am “faking.” It is this feeling that pertains to my discomfort about speaking on the disability panel. Ever since agreeing to do it, I have had the feeling of being an impersonator.
Could it be that I feel like a fake because I am in denial of my condition? Or ashamed? This seems unlikely, since I was the one who brought my memory loss to Peter’s and my children’s attention. I was the one who sought a diagnosis. What, then, about shame? I can truly say that I have never been ashamed of having dementia. I have a science background and have gathered convincing neurological evidence that our mental state—our consciousness, indeed—has a material substratum by which our “self” rises and falls. We have no control over our neurons being injured through disease or trauma. I therefore have no more need to feel shame about my mental illness than I would have if I had diabetes or cancer or multiple sclerosis. It never occurred to me to keep my diagnosis a secret. On the contrary—my goal is to speak about it whenever possible in order to help lift the shame, secrecy, and fear from this disease. No, it seems to me, shame is not the reason that I feel hesitant to participate in a public forum as a disabled person.
A different reason for the feeling that I am in “drag,” I believe, is that the cognitive image of someone with dementia that is lodged in my mind is the shuffling, withdrawn, unkempt, drooling, confused, and vacant-eyed person I know from watching films—and I’m talking about sympathetic films, like Iris—as well as documentary accounts. I posted one such account on my website under “Dementia in the News,” namely “A Family Takes Care of A Mother with Dementia.” I do not yet look or behave like Pam White and do not yet required the constant attention of my husband, as does Pam from her husband Ed. Am I not, therefore, not yet qualified to present myself as mentally disabled?
A final contributing reason for my feeling that my participation in Reelabilities will be a case of crip face is because I am among the ranks of the socially and educationally privileged. I came to the United States as an immigrant. As a white woman who had, because of her whiteness in apartheid South Africa—been entitled to have an education and a career, I was welcomed. Moreover, I accompanied my husband, Peter, who had a job offer that enabled us to get a temporary work visa. Had I been a poor, uneducated South African single woman, my chances of becoming an American would have been virtually nil. These privileges came to me not through any merit of my own, but rather because I seem to have been in the right place at the right time at several crucial points in my life. Together, all the breaks I have had have given me a voice, one that became stronger as I accumulated postgrad academic skills and reasoning patterns that enabled me to write and publish. On top of that, there is the irony that my early dementia diagnosis occurred while I still had extensive rationality and was still able to write. Ironically, therefore, the reach of my voice has grown because of my disability: because of the timeliness of my story just when millions of retiring Baby Boomers are swelling the dementia statistics, I have been published in a national magazine, Slate, and will have national and international distribution of my forthcoming book, Memory’s Last Breath: Field Notes on My Dementia. How is that for taking advantage of my disability? Is my “playing of the dementia card” not the same as crip drag?
My answer, after long reflection, is that there is no simple black or white answer.
My disability, as I see it, has a temporal component: while I am now not yet very disabled, I am becoming more so every day. There will come a day when I will have stepped out of the realm of rationality. I will no longer be able to write and speak. I will no longer have a voice. The certainty of my decline brings great responsibility. Every day until dementia silences me, it is my duty to speak for of my own lived experiences with dementia in hope that my story will also bring awareness to the lived experiences of my peers who already cannot speak for themselves.