Today's Chicago Tribune (page 25) includes the ostensibly pro-family perspective of attorney William Choslovsky. I'm mainly in favor of respecting the choices of families over those of self-proclaimed advocates, and certainly over those of state bureaucrats.
However, it is absolutely critical to presume, first of all, that the disabled may speak for themselves. It's only when an individual disabled person clearly does not speak for him or her self, that we may ethically consider anybody else's choice.
This is more complicated than it looks because disabled people do not really speak for themselves when they cannot pay, in addition to when they are actually incapable of speech. For that matter, to the degree that any of us cannot pay for or independently create what we want, we are all "disabled".
Many Americans may sincerely wish to live in the White House, but they must respect highly ritualized choices of around a hundred million fellow citizens on that, and they only have one chance every four years. This is not an entirely different kind of conflict from one where a profoundly retarded person sincerely wishes to live in their own home, but cannot work to pay the mortgage. Who speaks for another is not an entirely different kind of question from who depends on whom.
Hopefully we each depend, first of all, on ourselves. After that we have families, friends, community groups, organizations and governments, more or less in that order. Who speaks for us is closely tied to whom we depend on. It just has to be.
It's not a question of who, in all cases, ought to speak for the disabled. It's a separate question in each case, which is inextricably bound up with the particular relationships and dependencies of the individual disabled person.
If Johnny murdered his girlfriend and was found not guilty by reason of insanity, and mom and dad have the idea that Johnny was adopted after all, so it's probably a genetic mental illness and they can't help him, then maybe Johnny is not represented any better by mom and dad than he is by the state, when they say he needs to take anti-psychotic medication for the rest of his life. And in fact, if Johnny can't pay for his own private attorney, he'll sure have to deal with other agendas.
NAMI has served the interests of medical psychiatry and pharma for thirty years with a heavy pretense of being all for families who know what's best for their own mentally ill. Obviously it's not always true. Sometimes people just want a magic pill, and they can be fooled. Calling a person disabled can be a power play, too.
I worked for a client who was at Choate Mental Health Center in Anna, IL. That's the facility offered by William Choslovsky as an example of a campus with real community life, where Rita and Kevin Burke's son Brian lives happily. My client would certainly argue that Choate was a prison for him, and the state should close it and every institution like it.
He speaks for himself, and I agree with him.