Illness and disability

Along with an article on the failure of other primates to develop a system of communication comparable to human language, the January 12 Science Times in the NYT has a letter from William J. vanden Heuvel (founder and chairman emeritus of the Franklin & Eleanor Roosevelt Institute), following up on a January 5 article about the spot over FDR’s left eyebrow. The letter begins:

Your article perpetuates the idea that there was a concerted effort to conceal how sick President Franklin D. Roosevelt was, using as an example the fact that he had had polio at age 39, which caused him to be disabled to the extent that he could never stand or walk without assistance.

To F.D.R., this was not “a sickness” — one of the reasons he is an icon for people with disabilties. He educated Americans to understand that disability is not illness and that we can master the limitations caused by disability.

Some Republicans used the fact that he could not walk unaided in political attacks, even to the point of maintaining that “a cripple” should not be elected president. He did not conceal his physical limitation except to prevent his opponents from making political capital out of it.

The linguistically interesting point here is the contrast between illness/sickness/disease and disability. The two states are sometimes confounded, because people may be inclined to take disability as a sign of disease. In Roosevelt’s case, his disability was a consequence of an earlier illness (disabilities can, of course, arise in a number of other ways), so there was a connection between the two, but his disability was not itself a sickness.

In addition, some people are inclined to treat both disability and illness as sources of stigma, and that’s something that can’t be addressed by distinguishing the two.

(The topic is of special interest to me, since my right hand and arm are somewhat disabled, ultimately as a consequence of disease, namely necrotizing fasciitis. The event intervening between the illness and the disability was a series of surgeries in which my ulnar nerve was damaged. So I’m now disabled, but not now suffering from NF.)

Just two days before vanden Heuvel’s letter, the NYT Magazine had a fascinating piece on the vocabulary of disease: “The Americanization of Mental Illness”, by Ethan Watters. Watters notes the Western drive to conceptualize mental disorders as just another kind of disease (“mental illness”) and details some counterintuitive and not necessarily welcome consequences:

For more than a generation now, we in the West have aggressively spread our modern knowledge of mental illness around the world. We have done this in the name of science, believing that our approaches reveal the biological basis of psychic suffering and dispel prescientific myths and harmful stigma. There is now good evidence to suggest that in the process of teaching the rest of the world to think like us, we’ve been exporting our Western “symptom repertoire” as well. That is, we’ve been changing not only the treatments but also the expression of mental illness in other cultures. Indeed, a handful of mental-health disorders — depression, post-traumatic stress disorder and anorexia among them — now appear to be spreading across cultures with the speed of contagious diseases. These symptom clusters are becoming the lingua franca of human suffering, replacing indigenous forms of mental illness.

… at the same time that Western mental-health professionals have been convincing the world to think and talk about mental illnesses in biomedical terms, we have been simultaneously losing the war against stigma at home and abroad. Studies of attitudes in the United States from 1950 to 1996 have shown that the perception of dangerousness surrounding people with schizophrenia has steadily increased over this time. Similarly, a study in Germany found that the public’s desire to maintain distance from those with a diagnosis of schizophrenia increased from 1990 to 2001.

8 Responses to “Illness and disability”

  1. irrationalpoint Says:

    Interesting post!

    In the UK, there’s a big division between the “medical model” of disability and the “social model” — the latter tends to be strongly emphasised by disability rights activists, but is increasingly being seen in such mainstream institutional settings as my university’s Human Resources vocabulary. Very roughly: in the medical model, a person has an impairment (not an ideal word, but it’s the one often used in the discourse), and their impairment is a disability; that is, the disability is identical to the person’s physical state, in the case of a physical disability. In the social model, a person has an impairment, and society disables them on the basis of (note: not “because of”) their impairment. Not all impairments are disabilities (cf being tone-deaf, or being myopic within certain parameters), and as you note, not all disabilities are illnesses/diseases either. Linguistic flip side: In activist circles, it’s not uncommon to hear “disable” used as a verb.

    With mental illness, it’s much trickier. I find it extremely problematic to call depression or schizophrenia an “impairment”. It is very much the case that many people with depression or schizophrenia are disabled by society, but I’m very reluctant to call these conditions “impairments”. Even more so with something like Gender Identity Disorder.

    Of course, general usage isn’t quite in line with the disability/”impairment” distinction, as you point out — hence my fairly routine encounters with language like “what’s wrong with you?” when I’m using my mobility scooter, and the use of “problem” for “disability”. And as long as most people more or less equate disability with illness/problem/defect/etc, then stigma is going to attach to both the disability and the condition.


  2. The Ridger Says:

    Probably because I don’t belong to any such group, but I find the notion that “society disables people on the basis of their blindness” … well, let’s say weird. True, our society is set up for sighted people, but those who can’t see aren’t being picked on.

  3. irrationalpoint Says:

    Without wishing to threadjack:

    “True, our society is set up for sighted people, but those who can’t see aren’t being picked on.”

    It’s interesting that you don’t see one as more or less following from the other. Note that the claim that society disables people is a structure-level one, not an individual-level one (although that can happen too). It’s precisely the point that society is set up for non-disabled people. That’s why we have concepts in UK law like making “reasonable adjustments” for a disabled person’s access to a building or service (under the Disability Discrimination Act of 2005). The idea of needing to make adjustments itself points to the fact that the way society is set up excludes participation from some people in certain spheres by default. But anecdotally, this law is routinely flouted, so even getting adjustments made for someone’s access is in practice non-straightforward, which means that the situation is even worse than just “society is set up for non-blind people” — it’s that society systematically refuses access to blind people.


  4. The Ridger Says:

    I don’t. The world is “set up” for sighted people. I don’t see that society “disables” people who are blind. I do indeed think we need to make things accessible, but I also think that there is a norm. Refusing access doesn’t seem to me the same thing as actively disabling.

    Again, I expect this would be different were I blind (or something else). But the argument seems to my fortunate self strained.

    • bluehook Says:

      Remember Blunkett? A blind man in a ministerial post who claimed not to be disabled. Does this mean that he rejected the Social Model of Disability? I don’t know the answer to that but bear in mind that he had a guide dog, Braille printer, support staff, recording technology etc. and was therefore able to go about his life and his job just like anyone else. So claiming that he isn’t disabled makes sense, take away the dog and everything else would significantly disable him. His impairment remains unchanged but the extent to which he is disabled depends on the society which he lives in and its ability and willingness to provide the necessaary aids and support.
      What is the opposite of ‘disabled’?

      It’s not ‘abled’

      It’s not ‘differently able’

      It’s not ‘normal’

      It’s not ‘people without disabilities’

      The answer is ENABLED

  5. irrationalpoint Says:

    “I expect this would be different were I blind (or something else)”

    It might be worth thinking about why you think that your view is so determined by whether you are disabled or not. If the issues is that you feel short on information about accessibility issues, try reading up. BBC Ouch is as good a place as any to start.

    “The world is “set up” for sighted people.”

    This assumes that blind people interact with the world in a fundamentally different way from non-blind people. There’s no reason for that to be the case, especially if you compare with the case of tone-deafness. There are jobs that tone-deaf people are probably never going to be able to do, eg opera singing, but there’s no reason a tone deaf person should not get on just fine in the world. Similarly, it’s very unlikely that bus driving will ever become a viable job prospect for blind people, but that doesn’t mean a blind person should not have an otherwise full range of options. If they don’t, that suggests something socially-produced, rather than inherent to blindness.

    “Refusing access doesn’t seem to me the same thing as actively disabling.”

    Again, it’s worth reading up to get a better idea of what’s meant by access and by disabling. I can’t speak for anybody except me, but there are lots of information sources out there about the sorts of preventable access issues that people face, and the theory that’s been developed to explain that. The Scottish Accessible Information Forum also have some good short publications, including a pamphlet on the Social Model.

    Linguistic point: some activists have talked about the difference between terms like:

    “sighted” and “non-blind” (one centers blind experiences, the other doesn’t)
    “able-bodied” and “non-disabled” (one centers physical disability, the other doesn’t)

    I seem to remember that this has been discussed on this blog before. Note also that in saying “there is a norm” it’s ambiguous as to whether you mean that non-disabled people are the norm (in which case, why are they the norm?), or whether something like “there exists a normative expectation” or “there exists non-disabled-centricity”.


  6. Sparkie Says:

    Fascinating post. Thank you! In addition to the question of stigma, I think there’s a related issue of autonomy or agency raised by thinking through the implications of illness vs. disability. Sick people get subjected to a regime of treatment. Disabled people petition for accommodations. If you’re sick, then it’s a doctor who’s the ultimate authority on what’s best for you. If you’re disabled, then the question of “what’s best for you” doesn’t really enter the picture so much. It’s more of a matter of needs (for instance, “I need a wider door in order to get inside here!”), accommodations, and reasonableness.

    I don’t think a needs discourse is without it’s problems, of course. In fact, casting disabled persons as needy and whiny seems upon casual reflection to be at least part of how people with disabilities (particularly when they are making a demand for accommodation) are stigmatized.

    And thank you, irrationalpoint, for providing the link to The Scottish Accessible Information Forum! Their pamphlet on the Social Model rocks, and I’m going to point all of my friends who’ve worried about their vocabulary to this site. And, I’m never going to use the word “disabled” without thinking about it as a verb again. That’s a need little bit of brain jogging there!

    You might be interested to know that the whole impairment/disability model has a long history in American jurisprudence. In worker’s compensation and disability claims in the US, the courts consider the question of “impairment” an issue of fact that can only be settled by expert testimony (i.e. only a doctor can say whether or not you’re impaired). The question how much vocational disability stems from that impairment is a more slippery concept that involves a whole lot of “lawyering.” There’s even a professional standard issued every decade or so called *The AMA Guidelines to the Evaluation of Permanent Impairment* that spells out how docs should opine on the question of impairment.

    Finally, a note The Ridger – like irrationalpoint suggests, don’t make the mistake of mixing up “normative” and “normal.” There’s a long history of grappling with the question of “is” versus “ought to be” that dates back to the 17th century and David Hume. (Check it out on Wikipedia! It’s a good article!) This debate was made all the more complicated by the fact that a lot of deceptively similar words started being used by statisticians and criminologists. In fact, sometimes I sigh when I think about how different (possibly, maybe) the world might be had we only stuck to the original translation of Adolphe Quételet’s groundbreaking work back in 1835. “Mean man” sounds just so much more, well, mean than “normal people,” doesn’t it? So, if you can stomach a bad pun and some advice offered with a warm heart, please take a relaxing, deep breath and reconsider what irrationalpoint is saying while softly repeating to yourself “normal normative, normal normative.”

  7. Sparkie Says:

    Whoops, sorry all … comment boxes apparently don’t like the inequality sign. The last part of that last sentence could be rephrased as “normal does not equal normative, normal does not equal normative.” Who knew that inequality was non-ASCII?

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