I spent the weekend digging into No Pity (okay, and also reading a collection of Jonathan Lethem short stories), on Jay’s recommendation. It’s sort of a primer on the idea of disability as a civil rights struggle against cultural oppression; i.e., applying the reasoning behind words like “[blah]normativity” and “social construction” to disability and people living with disabilities, but for an audience that might not be familiar with either set of ideas. It was written three years after the ADA was passed–back in the bad old days before all businesses were compliant, institutional discrimination ended, and people living with disabilities faced no barriers whatsoever. I suspect it is current because of continuing disablism (also called ableism; Michael Berube makes the point that this redundancy exists because of mainstream obliviousness: there has not been enough discussion amongst the temporarily able-bodied to default to a standard).
One of the most fascinating passages I’ve encountered is the one on numbers; No Pity quotes the one-in-seven statistic mentioned here, and muses on some of the reasoning behind it. By one measure, we all will be people living with disabilities; until the cyborgs invade, we all will age. Other measurements for inclusion or exclusion are severity and permanence; the statistics quoted below indicate a few biases against certain conditions. Any statistic may include some disabilities that do not fit within the archetype of disability, such as clinical depression and celiac disease; it may exclude others, such as the aforementioned fibromyalgia:
There are some 35 million to 43 million disabled Americans, depending on who does the counting and what disabilities are included. In 1991 the Institute of Medicine, using federal health survey data, came up with a total of 35 million–one of every seven Americans–who have a disability that interferes with daily activities like work or keeping a household.
During debate on the Americans with Disabilities Act, lawmakers, President Bush, advocates, and members of the media freely used the higher figure of 43 million. That number came from other federal data. But even this figure did not include people with learning disabilities, some mental illness, those with AIDS, or people who are HIV positive and have other conditions covered under the civil rights legislation. Researchers cannot agree on the size of the disabilitiy population because they have no consensus on what constitutes disability, notes Mitchell LaPlante of the Disability Statistics Program. Most researchers like LaPlante use activity limitation as the definition. Many disability rights advocates, however, include health conditions that may not be limiting but still stigmatize or cause discrimination, like having had cancer. Some even looser estimates that include any disease or chronic health condition count 120 million or more disabled Americans. Some 31 million Americans, for example, have arthritis, but it limits the activities of only 7 million.
–No Pity, by Joseph P. Shapiro, pp. 6-7
An almost three-hundred-percent potential increase from one standard to another, in other words. For example: is a woman whose carpal tunnel syndrome prevents her from putting her groceries away disabled? What if she is not restricted from activities like “keeping a house” but cannot work at a clerical job? What if she can keep that job, but cannot perform certain of its duties? What if she must wear a brace or do hand and wrist exercises? What if her employer is relatively supportive? What if her employer is not? What if she had never needed to work in a clerical job? What if she has options beyond clerical work now that she must take advantage of them? What if she does not? What if she can afford to take care of her wrists outside of work, or take advantage of treatments like physical therapy? What if she cannot? What about her cousin, who knows about a family propensity f0r carpal tunnel, and takes measures to prevent developing a problem? All of these hypothetical people are affected, and carpal tunnel may not even make the list.