Why Do I Care What the Families Think?

I have a longstanding problem with reading any comment threads on posts discussing whether people with mental disabilities should be “allowed” to decide what medication and treatment they want, if they want any at all. The threads usually have one or two comments agreeing with the post, and then quickly devolve into stories from people who knew a mentally ill person once and how disturbing or upsetting or unpleasant it was for them when the person wasn’t on medication. And that pisses me off, because the person who should be centered and prioritized in that discussion is the actual person who is taking the meds, not the people around them.

Don’t get me wrong, I understand that some people with mental disabilities who are not taking medication are unpleasant to be around. I don’t believe that they’re more likely to be dangerous or violent as a general whole, there of course will be people who are, but that’s the tiny minority. I do recognize that some may be verbally or emotionally abusive to their friends and family. I agree that nobody should be forced to endure abuse of any kind, even if it is caused by the abuser’s mental disability. BUT. The fact that some people may be abusive without medication is nowhere near good enough reason to take away any person’s right to determine their own course of treatment. If an individual person becomes abusive or violent or dangerous, that’s a different situation that should be addressed for that individual person. But a blanket decision that everyone with a mental disability must take medication is an overbroad reaction to a relatively infrequent problem that is a huge infringement on the rights and dignity of the person with the mental disability.

So I really hate seeing the families of the person with a disability, rather than the person themselves, centered in discussions about what should happen to or for the person. Given that, I bet you can imagine my reaction when I saw this headline in the New York Times:

For Families of Mentally Ill, Mixed Feelings Over Push Away From Adult Homes

Joe Newell, a police property clerk on Staten Island, would love for his brother, John, to get out of the Coney Island adult home where his television set and other property have mysteriously disappeared. But Mr. Newell remembers how the last time his brother lived on his own, he stopped taking his epilepsy medication and slipped on the ice, slicing open his nose.

Donald Navard, 71, a retired bartender, wants something better than a threadbare life of bedbugs and institutional food for his niece, Dorothy. But he still remembers how she ran away from her last apartment after a week.

And Florence Weil, a longtime activist for the mentally ill, had high hopes for her daughter, Marci Reller, when she was placed in a small group home last summer. Seven days later, Ms. Reller ran away from the home and drank a fatal cocktail of furniture polish and heart pills.

I don’t really want to get into a discussion of whether this is the best outcome for the individuals with disabilities, because I don’t think we have enough information to make that decision. And we don’t have enough information because the article focuses only on the reactions of family members (who clearly are upset about the conditions in the group homes as well). There’s a single quote from a person with a disability, even though, according to the article itself, “Unlike some patients in psychiatric hospitals, residents of adult homes are not considered dangerous to themselves or others. They are generally legally independent adults in charge of their own affairs.”

I’m glad that the families are involved in the lives of the people with disabilities and care for them. I know the help and love of my family and friends were and continue to be essential for me in living with my disability. But I am much more interested in what the people who were living in those homes and now will not be think about the whole situation than their families.

By 13 October, 2009.    autonomy, mental health   



4 Comments

  1. *Nod.*

    What I’ve seen in discussions like this (like Hexy writes about in “Neurotypical Privilege: Yes, it Fucking Well Exists”) is when people who actually have mental illnesses say, “No, actually, you’re wrong,” family members will say something like: “I’m not talking about *you.* My relative is REALLY sick.” And their judgment seems to be: “If you can disagree with me, I’m not talking about people like you.” I see something very similar in disagreements between parents of autistic children and autistic people, too.
    .-= Tera´s last blog ..New blog of awesomeness =-.

  2. I agree with your post.

    Everyone else seems to know best. I always advocate it is up to the individual whether they take meds or not but it should be their decision not the shrinks nor the family/friends. And we always hear about the ‘carers’ involved and their needs. That’s my experience, and as a kid and as a teenager I was put on heavy dosages of chemical coshes that rendered me as a bloody zombie. Everyone told me what was best for me and that included taking the meds. Eventually I flushed the lot down the toilet. And there’s also the paternalistic ‘there, there… we are here to fight for your rights’ patronising organisations, which don’t have people who have (still are) experiencing the mental health system. My experiences have been in user-led organisations as opposed to orgs who think they have been given the right to speak on my behalf.

  3. Yes yes yes!

    I’m pleased my transportation advocacy introduced me to members of People First!, a self-advocacy group run by people who used to be jailed in state-run congregate “colonies” because of learning impairments. Working with them helped me get in touch with the importance of community services: without them, these folks would still be stuck on a lifetime sentence. Now they’re living on their own or with one or two roommates, plus a staffer they hire. That work also gave me the chance to learn how to communicate in plain English, which is almost always a good thing to do. (Exceptions if you’re in graduate school :,))
    .-= Jesse the K´s last blog ..Delightful New Resources =-.

  4. This is something that I totally agree with, even though I’m conflicted about it. You see, I’m a family member of one of the *few* people who get really dangerously violent when not on meds. Yet, I have a psych disorder myself, and know many others who do also, and I absolutely believe in self-determination. I hate that (where I live anyway) treatment can be mandated and enforced by police regardless of patient wishes. I don’t think an illness deserves violation of basic rights.

    What to do? Well, nothing, of course. It irks me that recently I found myself in a situation thinking ‘dammit, those rights shouldn’t apply here, we *should* be able to force him into treatment’. But it irks me much, much more that people like him are held up as an excuse for *all* psych patients to be treated as if they were at best incapable of making decisions and at worse violent criminals.
    .-= Cinnamon Girl´s last blog ..All aboard the clue boat…* =-.