Epistemic Injustice and Disability

This devastating article by Rahila Gupta describes her struggles to get medical and educational authorities to believe what she and her son Nihal were saying: that he was perfectly capable of a mainstream education, despite his disabilities. Anyone interested in epistemic injustice should read it, as it’s quite a catalog of such injustices: Nobody believed Rahila because mothers weren’t considered credible; nobody believed Nihal because they were so certain he couldn’t possibly be communicating; educational authorities didn’t want to give him the opportunity to learn because they thought he couldn’t; they didn’t want to facilitate him showing what he’d learned through communicative help or through extra time on exams; and on and on and on. And yet he became a prize-winning teenage poet.

One particularly searing example:

Yet at seven months old, I discovered that Nihal understood the names of the various parts of his face. I would sit him on my lap and hold his fisted hand close to his face and ask him to touch his eyes, nose and so on. He would bring the right part of his face down to his hand. By some miracle it appeared that his cognitive abilities had remained intact… In my delight, I showed him off like a performing monkey to an occupational therapist at a centre that had been our saviour – the first place where there was no suggestion that you might as well walk away from this child… This therapist would ask us to demonstrate his party trick for her students. What I didn’t realise until later, to our utter humiliation, was that she would introduce us before we entered the room as an example of how faith transcended rationality in parents. And once this construct had been placed upon it, those students would not believe the evidence of their own eyes – that Nihal was obviously touching parts of his face on cue.

(For the technically inclined: This seems to me also a good example of silencing (see e.g. Langton). What the therapist said to her students made it impossible for Rahila’s speech acts to have their intended effect of showing Nihal was able to understand language. If we see Nihal’s pointings as utterances, then the therapist arguably silenced these illocutionarily as well, by making it impossible for them to be understood as speech acts at all.)

5 thoughts on “Epistemic Injustice and Disability

  1. I wonder how familiar this story is. It seems to me to be very familiar, and I think that I reguarly now try to anticipate and counter such discounting. Unfortunately, too often saying something like “I’m not just some hysterical…” leads the hearer to think “O, that’s it! She is just some hysterical…”.

    I really like your analysis, Jender!

  2. A lot of the stories in the article are pretty terrible, including the one you quote, Jender. (How is it OK to tell a room full of people you think someone is deluded, but not have the guts to say it to the person’s face? Yuck.) That said, I don’t trust everything Rahila Gupta says, and I’m especially worried by her uncritical endorsement of facilitated communication. This entry in the skeptic’s dictionary gives a good overview of the case for and against facilitated communication, with references at the end. There is a real worry, backed up by empirical findings, that the communication is often coming not from the disabled person but from the facilitator. That seems like silencing if anything does.

  3. Rachael, I had the same worry. It seems to me that Rahila Gupta is describing how she took the evidence seriously that her son could understand and communicate (and it doesn’t sound like the initial evidence of that was from facilitated communication, it was from his own gestures). She respected her son and took her own observations of him seriously. And her descriptions of the ways in which nobody else would take her seriously are chilling.

    But it’s really important to take evidence seriously in every case, and when it comes to facilitated communication the evidence that it works is just really weak. Then treating it as if it works is, as you suggest, very far from respecting the people involved. Rahila Gupta is obviously aware of the objections, and describes using multiple facilitators and asking questions the facilitators could not answer – but when facilitated communication is tested experimentally, with people who do not communicate any other way, these are just the things it fails on.

    As someone whose job involves disability and education, I would never recommend allowing the use of facilitated communication to sit an exam.

  4. Two detailed, related posts perhaps of interest to those who read the original, both concerned with representations of disability, esp. as they make their way into the philosophical literature:

    Steven Drake from Not Dead yet on the Rom Houben case in Belgium: http://notdeadyetnewscommentary.blogspot.com/2009/11/art-caplan-debunks-23-year-misdiagnosis.html

    and

    Dick Sobsey at What Sorts on Peter Singer and Profound Intellectual Disability (for a detailed critique of how at least certain kinds of disability are badly misrepresented in the philosophical literature) http://whatsortsofpeople.wordpress.com/2008/12/30/peter-singer-profound-intellectual-disability/

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