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| Ragged Edge EXTRA! Many people are disabled by judges ruling in commitment and guardianship hearings. Read about "legal disability." |
by Cal Montgomery
A woman in Grand Rapids, Michigan, goes back to court at 9 a.m. on October 4 to fight for the right to refuse elective surgery for her kids. Calvin Luker, a consulting attorney for Michigan Protection and Advocacy Service (MPAS) and Tricia Luker, a "mom in the trenches," report that Lee Larsen, a deaf mother of two deaf sons, now 3 and 4 years old, left the children with friends for a weekend last year (she is separated from their deaf father). The children were abused by those friends, and as a result the state took them away from their mother. Larsen is making progress toward regaining custody, and she retains her parental rights. Meanwhile, the temporary custodian, a Michigan non-profit agency, wants the children to undergo cochlear implant surgery, and is asking the court to overrule Larsen's refusal. This should be simple, right? When parental rights have not been terminated, it is the policy of the Kent County Family Independence Agency (FIA, formerly Department of Social Services) to support parents' right to refuse elective procedures on behalf of their children. Cochlear implant surgery is an elective procedure. All the same, on October 4 everybody is heading back to court. When did you first hear about the Grand Rapids case? And from whom? How many hearing people do you know who know about it? Ask yourself -- and be honest -- how much you know about the issues, let alone the current struggles, of disability subgroups to which you don't belong. Cross-disability organizing means cross-disability education; it means recognizing that other people struggling for justice have something to teach us and seeking them out. The Lukers report that "the judge is hearing testimony on the cochlear implant -- including extensive testimony on deaf culture, etc., from both pro and con positions -- and has asked the various lawyers to brief the question of whether she has jurisdiction, or the legal power, to order the implantations." Claudia Lee of the Deaf Community Advocacy Network reports that at the last court date, Mr. Bramble announced his unwillingness to support Kent County FIA's policy in support of parental rights, at least when it comes to this family. David Gersch, the mother's attorney, asked the judge to remove Mr. Bramble from the case. Judge Feeney refused. I was talking to Emily Alexander, a Deaf activist from California, about the Grand Rapids case. "I wonder," she said, "if these were hearing parents whose kids were in foster care and who had learned about the risks involved with a cochlear implant, would the judge still think that the kid should be implanted if the parents didn't want it?" It may be that Larsen's deafness is not a critical factor. But Mr. Bramble's willingness to offer an expert witness who states that without cochlear implants a deaf person's brain cannot develop suggests that it is. People identified as being unable to think correctly (or at all) are disabled by our society almost unthinkingly, denied the chance to make decisions that those around them simply assume are theirs. And the connections many people make between mastery of spoken language and cognitive skills have been criticized by deaf and hard-of-hearing people for years. But I am certain that if all participants in the case viewed deafness as just another kind of diversity, the situation would never have arisen. If the boys' present and future disadvantages were attributed to our hearing-dominated society rather than to their own deafness (and their deaf parents' acceptance of their deafness), teaching them pride in who they are and the skills to struggle would make more sense. Many people who do hold the institutions of the hearing majority responsible (including some who regard cochlear implants as a good thing in some cases) are vehemently opposed to Mr. Bramble's position. But because the people who brought the case forward blame these disadvantages on the boys' inability to hear rather than on society's insistence on hearing as a prerequisite to full membership , cochlear implants are seen by many people as a solution to disability. Denying the children implants looks like condemning them to a lesser life. So instead of considering who has the right to make decisions regarding elective surgery on children, the judge considers whether cochlear implants are a good thing for these boys. Cochlear Implants: A Good Thing? The local oral school, which the children now attend, says yes. Members of the local Deaf community are reacting angrily to the idea that the oral school knows best. The state's expert witness says that without cochlear implants the kids' brains will not develop properly. Michigan Deaf Association is trying to raise money to bring Robert Hoffmeister, PhD, to Grand Rapids to testify. Dr. Hoffmeister, who grew up with deaf family members, has a long list of credentials and teaches at Boston University. The mother reportedly considered implantation but decided that the reasons against it outweighed the reasons to go ahead. (More about cochlear implants.)
Ms. Alexander notes that even if you start with the assumption that the boys suffer from deafness and not from discrimination, you may not agree that cochlear implants are a good thing. There are risks both during the procedure -- as there are with any surgery -- and afterwards. Any time you implant anything into a living body you run the risk of festering infection. The Associated Press reported on July 25 that "At least 13 people with cochlear implants to restore their hearing have come down with meningitis, including two preschoolers who died, the government said [today] - warning that the implants might allow an infection to fester deep in the ear," although there was no hard evidence of a connection. The article does note, moreover, that some deaf people without implants are already at higher risk of meningitis than most people. During the surgery, doctors irrevocably patients' ear(s), destroying residual hearing. After surgery, patients must undergo training to use the implants, and not all patients benefit. Those who do benefit typically don't hear as well as well as people with normal hearing. The new technology, in other words, doesn't raise the question of how best to prepare deaf children to live in a world designed by and for hearing people: in Richard Winefield's Never the Twain Shall Meet the roots of the current debate are traced to Alexander Graham Bell and Edward Miner Gallaudet. Neither does the new technology answer the question: cochlear implants do not provide deaf children the key to the hearing world. A Bad Law in the Making Claudia Lee doesn't want to talk about the pros and cons of cochlear implants. Her concern is the chance that the state will disable deaf parents (though that's not the way she phrases it); and she stresses that this isn't just about deaf people. "We need to focus on the rights of parents and not whether we agree or disagree with cochlear implants or the choices that parents make," she says. Michigan Protection and Advocacy Service, say the Lukers, agrees. It is in the process of preparing a brief focusing on "the broader question of jurisdiction." In other words, MPAS says this isn't a question about cochlear implants, but about whether a judge has the authority to overrule a parent exercising rights most parents take for granted. The starting point is "the observation that a parent's right to be parents and make decisions has both federal and Michigan constitutional protection." Not long ago, I watched an episode the MSNBC show The Abrams Report after seeing some ads promising a story about a strip club and disability rights. It was not an impressive segment. A man who uses a wheelchair was suing a strip club because the luxury lap dance room was only accessible by stairs. The two guests on the show, the plaintiff's lawyer and the club manager, were hardly eloquent as they defended their respective positions. But it was the legal commentator, Mr. Abrams, who really annoyed me: he kept repeating that surely the framers of the Americans with Disabilities Act hadn't meant strip clubs. (In fairness, he did manage more subtle legal analysis during other segments of the show.) If you ask me, that's exactly what the framers of the ADA meant; and if for some reason they didn't, they were mistaken. It's intended as a civil rights law: it's intended to give us access to the entire society. The parts that are good for us and the parts that are bad for us. Let me say it again: the ADA is supposed to ensure equal access to the society's benefits. And it is precisely that equal access that Mr. Bramble is challenging. A family is singled out by the because the parents are deaf or because the children are deaf or because all four of them are; and on that basis the judge is being asked to rule that the parents may not exercise all the rights our society grants parents. Ms. Alexander's question, "What if it were hearing parents?" cuts to the heart of the issue: a judge is considering imposing a legal disability on the basis of impairment. A clear distinction between impairment and disability -- such as is given by social model analyses of disability -- is vital to an understanding of the case. This is not a case about whether Michigan parents in general have too much freedom to make bad decisions on behalf of their children. This is a case about whether deaf parents or parents of deaf children have too much freedom to make decisions about elective surgery. And a precedent set here will affect more than just families with deaf members but fewer than all families. It's a disability issue. "This is a bad law in the making," says Ms. Luker. "The literature on compelled interventions generally shows a slippery slope; if cochlear implants now, then what next?" It Tolls For Thee So a woman in Grand Rapids, Michigan, goes back to court at 9 a.m. on October 4 to fight for the right to refuse elective surgery for her kids -- and to fight for our right not to be disabled by a society that is organized in such a way as to confer on some of its members advantages that are withheld from others. Let us wish her well. Read about "legal disability." Cal Montgomery reads a lot of books, argues with a handful of people, and tries to cause a useful degree of trouble from her home in Chicago.
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