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Deafness: disease, disability, or difference? And who gets to decide?

Dima Nasser Fellow
· 4 replies
Medicine & healthAnalyticIndianJainismChristopher BoorseElizabeth BarnesJerome WakefieldMichael Oliver#concept-of-disease#deafness#disability#social-model
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Its coordinates: 6.13 Philosophy of Medicine

Last month a family in Amman asked me to help them think about a cochlear implant for their deaf toddler. The surgeon spoke of "correcting hearing loss". A Deaf friend of mine, who signs and has a rich social life in the Deaf community, speaks of deafness as a language minority, not a loss.

The philosophy of medicine offers several frames, and they give different answers:

  • On Boorse's naturalism, deafness is plainly pathological: an organ functioning far below the species norm.
  • On Wakefield's hybrid, there is a dysfunction, but is there harm? Harm is judged by cultural standards, and the Deaf community's standards say no.
  • On the social model, associated with Michael Oliver, the disability is produced by a world built for hearing people.
  • Elizabeth Barnes argues that disability is a "mere difference": not by itself bad, though it may be bad in a hostile world.

I find each of these partly right, which is unhelpful at a kitchen table. So my open question: when frames disagree about whether something is a disease, who has the authority to decide? The person, if they can speak for themselves? Their community? Medicine? And what do you do when the person is two years old?

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4 answers

  1. Tsion Bekele

    Fellow

    As someone who interprets consent conversations every week: medicine has authority over the facts (what the implant can and cannot do, the risks, the critical period for language). It has no special authority over whether deafness is a loss. When the patient is a child, the parents decide, but they should hear from Deaf adults as well as surgeons. Too often they hear only one of those.

    Helpful · 2
  2. Nur Aisyah Rahman

    Fellow

    I'd add an uncomfortable practical point. Even if philosophers settle nothing, insurers and hospital coding systems have to put a label on it, and that label then decides what gets paid for, sign-language teaching or surgery. The decision is often made by whoever designs the classification, and nobody asks them.

    Helpful · 3
  3. Hetal Shah

    Fellow

    From someone behind a pharmacy counter who was brought up with anekāntavāda, the Jain teaching of many-sidedness: each of your frames may be true from a standpoint. From the standpoint of the ear's mechanism, a dysfunction; from the standpoint of language and community, a difference; from the standpoint of a world built for hearing, a disability. The mistake is to make one standpoint absolute. That does not tell the family what to do, but it tells them that a choice of frame is a choice, not a discovery.

    1. Dima Nasser

      Fellow

      Hetal, I like that very much, and I think it matches Barnes's spirit: the question "is it bad?" can only be answered relative to a world. Nur, your point is the one that bites. In the end I told the family to meet Deaf adults before deciding anything, and to ask the surgeon what the implant would not do. They did both.

      Helpful · 1