Monthly Archives: February 2012

The Myth of Home – Another Disability Post

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I thought I would share a few more links that relate, albeit obliquely, to my previous posts:

“Did You Find Out In Time?”: New Life Trajectories of Parents Who Choose to Continue a Pregnancy Where a Genetic Disorder is Diagnosed or Likely. The study was published in 2011, and explores to what extent attitudes to disability and prenatal testing impacted the decision to continue pregnancy. I note that all of the children were under age 10. I wonder what sort of results they would get after puberty, or once the child enters adulthood (I imagine that was outside of the scope of the study). I also note that the study participants were recruited from a support group. Wonder what the results are of a parent who doesn’t have much support?

Home Is Not For Everyone, by Fern Kupfer. In this essay from 1997, Ms. Kupfer follows up on her now-classic (at least, among the families of people with severely disabled members) article Institution Is Not A Dirty Word. I’m particularly mindful of this quote:

“…the view that the “home” is the best place for every child has dangerous ramifications. Government funds are cut for human services under the guise of anti-institutionalization. Well-meaning reformers who tell us how terrible the institutions are should be wary lest they become unwilling accomplices to politicians who only want to walk a tight fiscal line. It takes a lot of money to run residential facilities.” (emphasis mine)

Compare that to this post by Ettina, over at the Abnormal Diversity blog:

“I kept wanting to scream at Fern Kupfer that her son Zach was a worthwhile person, not “damaged goods” (as she calls him in her introduction)…I keep wondering about Fern Kupfer, wondering about how she was blinded by prejudice…Fern Kupfer shattered my innocent assumption that anyone who really got to know a profoundly developmentally delayed person would see how worthwhile they were. Here was a parent who didn’t get it.”

Ettina goes on to say in the comments (in response to criticism of her post):

“…Even if [Zac] had Canavan’s Disease (which is, I agree, a terrible condition), he deserved to be accepted and valued for who he was, and he didn’t get that. Instead he got one of the most hateful parents I’ve ever seen of a disabled child. His father appears to have accepted him somewhat, but not his mother. She claimed he destroyed their family, but it was really her hateful attitude towards him that did that.” (emphasis and link mine)

Ettina makes a well-meaning, passionate plea that every person deserves acceptance and respect, even if they aren’t what she calls “able disabled”. This is a view that many disability rights activists parrot, if—unlike Ettina—they don’t act as if they really believe it.

Ettina believes it, which I’m glad to see. However, while I appreciate that she’s trying to make the profoundly disabled part of disability activism, I believe she’s the one who ultimately doesn’t get it. Ettina has a host of disabilities (outlined here), plus she has PTSD from being sexually abused, so she’s certainly coming from the viewpoint of one who appreciates discrimination as only a disabled person can.

That said , she’s never been a caregiver of someone whose cognitive functioning is very low, or whose multiple disabilities require round-the-clock care. She’s buying into the myth that, if there were no institutions, people with severe disabilities could live happily at home.

That’s a myth. It really is.

There’s a point where—as a family member–you can no longer provide the care needed (if you ever could, really). There’s a point where you have to admit, against all hope, that your child, sibling, or parent isn’t going to improve, or that they’re going downhill. And there’s a point where you’re forced to recognize that nature makes mistakes. That not every human being born can live without the 24/7 assistance of a team of people struggling to reduce his pain, to nourish him even as the body resists feeding, to get him through the seizures, to fight non-stop against a body that is desperately trying to die because it knows it never should have lived.

There’s a point where you have to acknowledge that sometimes severe physical and/or cognitive disability prevents (or will prevent, in the case of pre-natal diagnosis) a life—in the sense of complex cognition that results in individual personhood–from ever truly coming into being. “Damaged goods” may be a cold-hearted way to put it, but it’s not necessarily inaccurate.

I firmly believe that we ought to try to give the severely disabled amongst us every opportunity. I also believe that we must do the best for them, and for their families. Sometimes, that means that the best thing for people with severe disabilities is to not to stay at home.

I have a home. I could not care for my brothers or father there, even though their mental disabilities aren’t nearly as severe as Zac’s. I’d have to quit work and live on public assistance, or spend money that I don’t have on day programs or 24/7 in-home caregivers. Our standard of living would be significantly reduced if I tried to take care of them at home. And the emotional toll on me would be unspeakable.

Right now they’re all in good, Medicaid-qualified facilities (my brothers live in actual homes, and nice ones—nicer than mine!). They’re receiving good care. I check on and visit them regularly (well, when the gas prices aren’t outrageous). In a way, they have better social lives than I do. J For all of us to be able to live, rather than just exist, I had to “institutionalize” them.

I’m glad, for all our sakes, that those “institutions” were there. Such places aren’t for everyone, and goodness knows they could all use some improvement (like increasing the salaries of those who work there!). But I shudder to think what would happen if the severely disabled didn’t have homes to provide them with what they needed.