The Disability "Cure" Lottery
Arthur Penn’s multiple-Academy Award winning film The Miracle Worker (1962) is reviled by people with disabilities for its celebration of coercion and violence as means to make Helen Keller “normal.” Diane Wilkins Productions/Mickee Faust Films’ short parody, Mickee Faust’s Miracle Worker satirizes the implicit able-bodied expectations and politics in work in that film and U.S. culture generally. As disability scholar Paul K. Longmore demonstrates in his book, Why I Burned my Book, and Other Essays on Disability (Temple UP 2003), this perspective implies that it is “better [to be] dead than disabled.”
Activist groups, like the national, not-for-profit organization Not Dead Yet, work to raise awareness of the basic rights of people with disabilities. Not Dead Yet was one of the lead groups opposing the “right” of Terry Schiavo’s husband to starve and dehydrate her to death out of “pity,” believing that she was “better off” dead.
Leave it to ABC, the network that brought us the alarmingly homogenizing Extreme Makeover, to evoke Penn’s film in the title of its new reality program, Miracle Workers. Indeed, the over-sentimentalization and pitying protocols of dominant culture towards disability frame the show. Each episode focuses on two “tragic” victims of various disabilities and the doctors who will “cure” them. The narrative structure is predictably manipulative: each person’s disability, difficulties, and family are introduced. We meet the medical team, and hear about their “ground-breaking” procedure. We are shown the patient’s apprehensions, some complications during surgery, and the emergence of an altered individual at the end.
The first two episodes featured Todd, “blind since childhood due to an allergic reaction to penicillin”; Vanessa, “who suffers from degenerative bone and joint disease”; Emily, a 19-year-old “with a severe form of Tourette Syndrome”; and Adrian, a toddler with Vater’s Syndrome (born with five fused ribs on one side, which radically changed the shape of his spine). Through the “miracles” of modern medicine, Todd has stem cells and full corneal transplants that return his sight (though to what degree is never mentioned), Vanessa’s spine is fused so she can move without chronic pain, Emily receives Deep Brain Stimulation treatment, and Adrian has an expandable titanium prosthesis attached to opposite top and lower ribs, which will afford the little boy “the chance to stand tall.” It’s not so much that the medical treatments for these disabilities are a problem, especially in the case of Vanessa, who experiences chronic pain. Certainly, helping individuals to live without ongoing and intense pain is a good thing. Rather, the problem has to do with the able-bodied presumptions that underlie Miracle Workers. Todd, for instance, is perfectly “normal” in every respect except one. He is married, has several children, and a full time job as a nurse’s assistant. His “tragedy” is that he has never seen his wife or children.
Only a hyper-visually oriented and able-bodied culture could so demand that sight be a precondition for a “full” human life. The pervasiveness of these ideological imperatives is made obvious insofar as Todd himself has subscribed to them. Why is it presumed (by him, his family, his medical team, the audience) that Todd cannot forge as strong emotional bonds with his children, a romantic life with his wife, and full social participation because he is blind?
This able-bodied prejudice is furthered in the language used throughout the show. Vanessa is repeatedly described, in captions when she’s on screen, as “wheelchair bound.” Never mind that many people on wheels strenuously object to this rhetoric of limitation and imprisonment. And Adrian is given “the chance to stand tall,” as if standing were the primary mark of full humanity. What about people who can’t “stand tall” due to short-stature or SCI? Are they less “human”?
Perhaps the most objectionable aspect of Miracle Workers is its invocation of the charity model of disability management, conjoined with its lottery logic: only select individuals are worthy of the “cure.” The show foregrounds the lack of resources, economic and medical, available to its patients. So far, all have been working class folks whose lives are miraculously changed by the lucky intervention of ABC. Of course, the show mentions nothing of the fact that people with disabilities are the most economically disadvantaged minority population in the U.S. Unemployment rates for disabled people are always above 50 percent, which is driven by the fact that people with disabilities are often denied the opportunity to work. This is due not only to employer discrimination, but because federal and state assistance is often granted on the condition that disabled people specifically don’t hold down even part-time jobs: the government pays them not to work. Additionally, people with disabilities routinely experience a lack or medical care, or draconian bureaucratic systems that make it nearly impossible to get care, owing to a greedy health insurance industry.
Miracle Workers’ eliding of these real social conditions isn’t as disturbing as its implied lottery logic and obsessive promotion of “the cure.” While the show hints at the expense of these various procedures and celebrates its own financial magnanimity, the main message is that disability can be cured, which, of course, is not true.
Even if such procedures are only available to the very lucky (or very rich) few, the focus on the cure puts the “problem” of disability back in the laps of people with disability, not the health insurance industry that denies them access to care, or the able-bodied social and political environment that produces individuals as “disabled” in relation to some fantasy ideal in the first place. Disability, then, is the individual’s problem. The “cure” is out there, Miracle Workers suggests, and if you, person with disabilities, can’t “overcome,” “we” can’t be bothered.