Saturday, August 25, 2007

Back Story ...

Been thinking about that last entry since writing it. As in most instances, it tells only a part of the story. What I need to add is this:

That seemingly irrational legislation that made it impossible for the mentally-retarded to undergo tubal ligation procedures had a reasonable and rational beginning. It was originally designed to halt a cruel practice being forced upon poor and mostly black female welfare recipients who were receiving assistance through the ANC (Aid To Needy Children) program in the State of California. When such young women were seen as drains upon the system by having more children than some well-meaning social worker considered practical -- given their inability to support them financially-- they were often sterilized during a delivery -- and at times, with or without their permission. These dependent and often single women were viewed as using multiple pregnancies to garner for themselves incomes they could not otherwise have earned. They were commonly seen as abusing the system and deserving of their fate; a judgment that may or may not have been warranted, and was certainly questionable.

At some point this was challenged, and legislation came into being that would deny any agency the right to sterilize women -- especially those who were often illiterate or under-educated. The legislation was a perfectly rational answer to an irrational and punitive practice. Unfortunately, the mentally-retarded were caught in the glitch. They still are. I don't believe those laws were ever intended to accomplish what they've imposed on the mentally disabled. And most of us have forgotten how those regulations came into being in the first place and what motivated their passage into law.

The law reads (I'm paraphrasing, of course): "A woman cannot undergo sterilization who is incapable of informed consent."

It was for this reason that I took the responsibility to act on my own and disregard a ruling that I was sure was not reasonable and was quite possibly illegal. I was fully prepared to do it as an act of civil disobedience, with the full expectation that -- if challenged -- I would pay the penalty in order to have the issue addressed and the ruling overturned. I had legal counsel in anticipation of some challenge from those concerned. It didn't come to that, fortunately. It's clear that no one really wants to deal with the issue so it continues to victimize the retarded.

An analogous situation might be the curb cuts that were created to make easier the life of the physically-disabled confined to wheelchairs. No one could foresee that this wonderful and enabling adaptation of street corners would place the blind in jeopardy. Those without sight could no longer be certain when they'd come to the end of a block since a white cane may or may not pick up the curb's edge before its owner stumbled into oncoming traffic ... .

At times the law of unintended consequences can have a cruel and unseen edge.

Sometimes you truly need to go it alone ... with eyes wide open and compassion as a guide. Even then there are no guarantees.

Photo: This is a sculpture that Dorian worked on for weeks. Not sure what it represents, lots of small pieces of wood brightly painted and piled high ... she was very excited for that period and spoke about it in different ways at different times. It was eventually disassembled and became parts of other sculptures ... having many lives. Click on this thumbnail to see the detail. It's quite stunning, I think.

Tuesday, August 21, 2007

About that admission of having prevented Dorian from having a child ... ever.

As I became aware of the fact that her body was maturing naturally, and that it would follow that her sexuality would begin to emerge. That the hunger for sexual fulfillment would not be denied by her intellectual inadequacies. And that what we were facing was a decision that would be difficult but necessary -- if she were going to be allowed to live out that part of her being that was uneffected by her deficits. It was not her body that was disabled, but her mind.

I began to talk about my new awareness with her social workers and case manager over several months. It quickly became clear that the answers were cloudy and that the professionals (psychologists, social workers, etc.) were terribly uncomfortable with the subject, and that case law would be of little help.

The first shocking discovery came from a conference at Asilomar one summer -- one involving concerned parents and case workers and representatives from a variety of nonprofits and vendors charged with the caring for this population. When I dared to publicly ask my questions in an open session, I found myself pounced upon by several outraged parents wanting me to answer the question (when I asked about the advisability of sterilization), "...and what will you do if she finds a normal man who wants to marry her despite her mental disabilities?" I'd never even imagined such a possibility. It had never dawned ... could such a man be considered normal? What on earth were these kind people suggesting? Was this classic denial?

From a social worker: "Sterilization is against the law in the State of California due to the reality that your daughter is incapable of giving informed consent." Now. This was the awful truth. I would never have guessed at such stupidity. It was ludicrous. She would be forced to procreate, produce another life with no capacity to parent a child. While those who held the power over such decisions wanted to frame the discussion in terms of her inalienable rights, I was equally determined to find someone who would talk with me about her right not to bear children.

In an instant I suspected that such a law could only be enacted by men. Women would never agree to such a travesty. Only a man would believe that women can only be fulfilled by giving birth, and that a woman who did not follow her fate by so doing was not a woman at all. And that to prevent pregnancy in the retarded was cruel and inhumane. Hogwash!

I'd seen a parade of recently-made films romanticizing the developmentally disabled (I Am Sam, Forest Gump), and I was appalled! I loved my daughter too much to ever be persuaded to place her in such an impossible way of life.

As her mother, I was aware that doll play never worked with Dorian. She would bring the dolls to me to be dressed and fed. Problem was that she knew that I was the mother. She had no abstract ability and couldn't envision herself as a mother at all. She couldn't project herself into the future -- couldn't weigh consequences or alternatives (as she still cannot, though she has developed a bit over the years). Was I the only one in that grand hall who knew that?

I came home from the conference. In a few days I found a sympathetic and courageous physician with whom Dorian and I visited several times, until he felt she was reasonably aware of the procedure and why, and it was done. Some days later we saw one of her friends from a former program on the streets near her old group home -- pushing a stroller holding an infant with two small children holding onto her skirts as they found their way home from the grocery store. Such a pity! Her religious parents had insisted upon Sarah's right to bear ... . When the parents are gone, her siblings will fall heir to these children along with their mother -- and the weight of all those lives will move into the next generation for caretaking.

This will not happen to Dorian nor to her brothers. They are free to care for her from a distance -- leaving room for their own lives and responsibilities -- because she has been made as independent as is possible, given her deficits. Their attitude toward her is loving. She is learning -- after a fashion -- to find her own way, albeit it somewhat unsteadily, in the world. To be an artist who may be able to supplement her disability pension and social security through her art plus her share of family assets upon my death.

To any parent among you who may be struggling with a similar responsibility, your answer may not be the one that I've chosen, but I wish with all my heart that I'd known how other parents had responded to these questions when I felt so alone in making these critical choices.

It is to you that I send these words.

Follow your intuition guided by love. You have been given both.

Photo: This is made of mardi gras beads glued to canvas, but she didn't give it a name. It is quite beautiful. It's interesting to me that she deals with abstractions with great ease in her art while incapable of it intellectually. The mind is a mysterious and magical thing ... .