Wednesday, November 28, 2012

Indignities, abuses, offences and choosing one's battles

I have just finished reading the transcript of the conference I mentioned in my last entry. Each speaker there conveyed some crucial and infuriating information. For example, a severely physically disabled young man with severe physical CP, married and a university educated author, described life in one of our "better" institutions. Among his revelations was this:
"In the caregivers' area a page was posted listing, for all to see, the bathroom eliminations of every resident. This is something that really angered me and I asked for it to be removed and placed instead in private files. It was some time before the page was removed and only after I enlisted the help of N. at the Human Rights Center fro People with Disabilities. Finally they removed it."
Sometimes such "minor" indignities are the most difficult to fight.  They are not a crime per se so the police cannot be enlisted. But we learned that even when outright crimes of abuse are involved the police - in this country, at least - are loathe to intervene."The police view these institutions as having a separate rule of law" N., director of the Human Rights Center's Community Department told us at the conference.
In the most recent scandal to hit our headlines last month, N. said: "...the police only entered [the institution] after they had received authorization from the Health Ministry. This is something that must change."

Our goal is not simply to give our children the best life possible despite their disabilities. We are also, often inadvertently, helping to transform society's attitudes. We are hastening the day when people will first see the humanity and dignity in individuals with disabilities and only afterward the disability. Many of us live in environments where that is still a pipe dream.

But every baby step is crucial. For example, my pre-school-age granddaughters watch me caring for C.; they hear my explanations for why she is the way she is. Even the youngest one, almost 3 months old, stared at C. this weekend, apparently waiting for that smile she gets from everybody else she encounters. I imagine she was wondering why this person remained poker faced. She was already learning that some people are react differently.

But including our disabled children in neighborhood and family events can be risky. Sometimes their very attendance triggers vile responses - as we discovered thirteen years ago. We had brought C. to the Bar Mitzvah of the son of one of my two brothers. Several weeks later, my other brother's wife called us - a rare occurrence. Apparently this was urgent: "C.'s presence at that Bar Mitzvah", she fumed, "torpedoed the match we had arranged for our oldest daughter." She went to explain that when the parents of the intended groom learned that there was a second disabled child in the family - my brother has a cognitively impaired son of his own - they reneged on the planned engagement.

My sister-in-law-from-hell demanded access to C.'s medical file so that their son's neurologist could write a letter to the young man's parents. Sister-in-law FH wanted to assure them that the disabilities of the two cousins were unrelated and not genetic. Needless to say, we obliged them. Epilogue: the wary parents of the prospective groom weren't swayed.  Brother and sister-in-law FH caught their daughter another man.  Needless to say, I have not spoken to that brother since.

  1. C.'s school wheelchair is finally equipped with two footrests. One of them only supports the foot if C. is wearing shoes. I've pointed that out to the teacher but don't expect action and don't plan on pursuing it. If I don't choose my battles carefully the staff will probably run me out of town.
  2. C. has resumed feeding herself and walking at her peak. As always, the change is inexplicable; it can't be related to any changes in her life. These random performance curves always reinforce my view of alternative remedies. Often, during the course of those expensive and dubious treatments children do improve . Naturally, the treatments are given all the credit. But in truth, many of those changes would have occurred anyway.
I say this after years spent chasing the alternative miracle cure when C. was younger.. We tried over thirty - no, that was no typo, over 30 - alternative therapies, I am convinced that salvation is nowhere in that realm. The fortunes that we invest in charlatanry - out of desperation, of course - would be better spent on proven, effective therapies and equipment.

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