Tuesday, January 02, 2007

How human rights disappear

Last November, New Scientist published a short article called Ear implant success sparks culture war. This is from the opening paragraph:

A spate of new studies has shown that profoundly deaf babies who receive cochlear implants in their first year of life develop language and speech skills remarkably close to those of hearing children. Many of the children even learn to sing passably well and function almost flawlessly in the hearing world.

This is regardless that, as the New Scientist points out eventually,

Even the most technically advanced implant provides the brain with only an extremely coarse approximation of the signal provided by a healthy ear.

These findings are important, because surgical implantation in the second or third years of life, as was more usually done, has not been so successful:

Until recently there was no good evidence that implants routinely improved children's chances of developing normal speech and language, raising fears that those fitted with implants would be stuck in a no-man's land - part of neither the hearing world nor the deaf one.

Earlier this year, through a landmark legal decision, sign language became a de facto official language in Canada. But in the New Scientist article, "normal" language is defined as excluding sign language, which is like excluding any other language (e.g., French, Cree) from being "normal" language. The article goes on to say:

That concern may be put to rest by the new studies. In one, presented last week at the Bionic Ear Institute in Melbourne, Australia, a team led by Richard Dowell at the University of Melbourne showed that 11 profoundly deaf children who received cochlear implants before the age of 1 had entirely normal language development at least up to age 4 to 5. Language skills were assessed using a battery of tests, including routine tests of comprehension and expression and observing at what age they started different types of babbling and using key words.

Their language development was also superior to a further 36 children who had been implanted at age 1 or 2, suggesting that the earlier the implant is fitted the better. "The kids still don't have normal hearing, but they have normal language. They can have a conversation, make a joke, lie, tease - all those normal things that 4 or 5-year-olds do," says team member Shani Dettman.


Again, "normal" language is defined as excluding sign language. Then there is the implication that native signing deaf children can't have conversations, make jokes, etc. Only children who have "normal" language (meaning, not sign language) can do these things. The New Scientist goes on to quote a researcher, Ann Geers, who was involved in another study reporting the effectiveness of very early implantation:

Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."

Now deaf people who remain deaf are not only considered to lack "normal" language, their basic human rights have vanished. They can no longer marry who they like or work where they like. That is, they lack some of the very basic human rights that benefit and protect non-deaf people and which non-deaf people can take for granted. "Hostility" is beside the point.

Setting aside arguments about culture, this is a demonstration of how human rights disappear. A group of people has their essential human differences pathologized. Their basic human qualities are then denied--because their differences have become unacceptable. A treatment is then promoted that promises to eradicate their pathology and make them normal, or at least make them appear to be as normal as possible. When a human difference is classified as a pathology and then declared treatable, those having this difference--in this case, deaf people--no longer have rights as themselves.

This is how the human rights of homosexuals would have disappeared if Ivar Lovaas' NIH-funded Feminine Boy Project had not been challenged as to its ethics--versus its effectiveness--by behaviour analysts and others (some information about the UCLA FBP is here and here).

According to Canada's autism advocates, criticizing ABA programs is reprehensible. But if no one had criticized the apparently "effective" FBP, the world would look very different right now. As I've written elsewhere, we would not have recently had a political debate resulting in the acceptance of same-sex marriage in Canada. We would instead have desperate parents using the Canadian Charter of Rights and Freedoms--our highest law--to demand that governments fund "medically necessary" Lovaas homosexuality treatment. We would have all our national political parties, including our federal government, supporting "homosexuality advocates" in their demands for a "National Homosexuality Strategy" with an emphasis on surveillance, early diagnosis and treatment of this treatable--provided treatment starts early enough, and is sufficiently intensive--pathology.

(You can find an excellent discussion about cochlear implants and the rights of deaf people in this Canadian Medical Association Journal article.)