Tuesday, March 09, 2004

Life goes on ... .

Spent last 48 hours looking into day programs, 30-day notice for moving, checking out truckers, places where donations of household items are wanted, (whatever will we do with 13 umbrellas?), hauling 15 years accumulation of junk ... It's gonna be a long spring of readjustments. So far, so good. Not too much resistance to date.

First program (just a few blocks away) turned out to be unsuitable. Population is at a very different level of functioning -- below her by far. That may prove to be a problem I've not given enough thought to. Her social worker has weighed in and she's someone whose counsel I value. Have arranged to visit another that she's recommended on Tuesday of next week. There is a web site, and it looks promising.

It would be so easy to just give in to the temptation to keep her here with me over the next few years and then let the chips fall where they may. Unfair to David and Bob, though. I owe it to them to complete my role in her (their) life by continuing to prepare her for my taking leave of the planet to fulfill my role in this universal recycling process called "Life!"

Which reminds me of one of those attitudes I've exhibited over time -- an attitude that tends to alienate me from many in the community of professionals who work with the mentally disabled. I am unalterably opposed to allowing my daughter to bear children. Felt so strongly about it that I arranged to have that possibility eliminated when she was in her early twenties. Sterilization is not legal in my state, and required finding a sympathetic physician who would perform the necessary surgical procedure. Have never regretted that decision. We prepared her with as much honesty as she could understand and it went well. It was done only after she'd been allowed (by the institution) to become pregnant while in their care -- and been aborted without my knowledge or consent. She was an adult, so neither was required. Nonetheless, had she not very innocently reported the fact to me -- I'd have never known. I bitterly resented not being able to be with her for comfort at what must have been a frightening and confusing time. She was in her fourth month, I believe.

When confronted, staff explained to me that the legal reason why she could not be sterilized had to do with her inability to give informed consent. She was not considered capable of signing her name under the law, but was capable of giving birth and parenting my grandchild. There is a young woman in Dorian's disabled community who has now given birth to three children, and is "caring for them." Such a tragedy... .

When I see films like "Forest Gump" and "I am Sam" and others of that genre, I am furious! They romanticize this population to their detriment. Allowing parenthood to the mentally disabled doesn't take into account that the custodial responsibility is therefore extended to the next generation. No one thinks about what it means for the siblings of the disabled when the parents have passed away. This heavy load will die with me. Had I not eliminated this complication, my sons would have their freedoms and those of their children limited both financially and psychologically. The movies end far short of doing those important projections, therefore leaving much that is critical to the story unresolved. The emotionality such stories produce mis-inform audiences and add to the problems that families face over the generations. I hope that I've guaranteed Dorian enough goodwill and caring by not placing her brothers in the position of having to bear the considerable weight of her existence throughout their own lives. I think that I've allowed enough room for them to love her by not having their lives restricted prematurely.

Interesting fact: Dolls never worked with Dorrie. Other little girls use them as a way of role-playing their way through their childhood. "Let's pretend" was beyond Dorian. This requires abstract ability. She brought her babies to me to be dressed and fed. That's what mommy's do, right? Given her very limited ability to project herself into the future, there was no way for her to imagine herself in the role of mother. She's come to that late in life through caring for her two cats. Now, she's "mother" and I'm "grandmother" to Speedy and Gracie. Have you any idea what it would have been like had she been allowed to give birth to a child? She would have brought it (rightly) to me. I'm the "mother." Or, it would have been taken from her -- given her inability to parent. The irony of being allowed to give birth while being considered incapable of "informed consent" is shocking to me.

On the other hand, we have a healthy young woman whose body is strong and capable of reproduction but whose mind is hopelessly damaged ... do you deny sexual expression? I say not; another departure from the view of the professionals, though that is changing in this time of sexual freedom. Keeping that all in balance has been a real challenge. We have a lot of growing to do, as a society, but there are signs that all is not lost. I do meet some truly enlightened souls along the way, and it helps. My views aren't as shocking as they once were, and I run into an occasional parent who says a silent "amen."

I'm off to pick her up at her arts program (Tuesdays and Thursdays, all day) and I'm late.

Tango still mostly in the mind, but coming up fast... .