When my son Joseph was very small, his mom Judy and I knew he had some kind of problem. Nobody could say what it was, or what had caused it, and ignorance about the thing confronting us turned out to be another major problem in itself. But we had no doubt whatsoever that we needed to work on his behalf and try to give him some options in life.
Those early years were difficult, but I miss the single-minded focus we enjoyed then, which was reinforced by confidence that our cause was right, optimism that ultimately we would succeed, expectation that Joseph’s circumstances would improve.
That’s just the way things are supposed to work out.
Gradually, the situation became more complicated. My memoir traces that process.
Complicated refers to the intrusion of other pressing issues, on top of the biggie already occupying our thoughts. For us, those issues concerned, first, our finances and then Judy’s health.
But dire though they were, they did not supplant the original crusade. From the perspective I had then—and still, 30 years later, cannot bring myself to renounce—our son’s disability meant a blighted life if it could not be overcome.
I say that knowing many people with various disabilities do enjoy lives that are full and rewarding, and that everyone is hampered by imperfections of one sort or another. Each of us muddles through, regardless. The healthy response is to capitalize on our strengths and find a way of deciding the process and results are acceptable.
But Joseph’s problem could not be compensated for, or papered over. However it might be defined (I still have no useful name for it!), the thing resisted all such efforts. As he grew older, his limitations became ever more painfully obvious.
WATB includes a brief meditation that compares “acceptance” with signing to take delivery of a package, i.e., willingly claiming the unwanted condition. I could not do that.
I could continue to love Joseph, and see to his basic needs. And I could look after myself. I remarried after Judy’s death and started another family (in which I continue to find great happiness, btw), and then very gradually, over a period of years, I conceded defeat in the campaign to rescue my firstborn. Extraordinary efforts had not made the difference for him. I could not justify further efforts, and so I adapted.
This does not mean I am pleased when I consider the life he is living. This week I had occasion to visit the day center where he spends most of his waking hours. Although the staff were busy, some of his peers wandered about aimlessly or appeared totally disconnected from their surroundings. One needed to have his pants changed. Joseph meanwhile was vocalizing loudly, as he occasionally does when dissatisfied about something. So many times I have told him how much better off he’d be if only he found a way to communicate. I am pretty sure he doesn’t like to hear that. Not speaking (or writing, or signing) is part of his disability. Which, again, cannot be changed. I now get that.
Still, it seems reasonable to consider whether some part of these circumstances might be made better. Putting aside the disability itself, can we not make a little headway with related matters, or at least with any of the complications that arise from time to time?
Despite all the difficulties encountered along the way, I have always been thankful for the fact that, throughout Joseph’s life, no one has challenged my right to make decisions regarding the care he receives. I am his parent, and his conservator. Other people are welcome to offer advice. But if, for example, I find a better option than the day center mentioned above, I am free to move him there on my own authority (as I’ve pulled him out of other places in the past). I might make mistakes, and admittedly have made mistakes. But I believe the decision-making should occur as close as possible to the person directly affected. If at some point Joseph became able to decide things for himself, I would be absolutely delighted to let him. Until then, as long as I remain competent, I’ve got the authority.
That is why I am outraged every time I hear of families with disabled children being denied that right. If a kid is able to indicate a preference in a matter such as living at home rather than in a restrictive institution far from his home, and if his family has the same desire, an outsider would need to make a very strong case for standing in their way, even for a little while.
I’m thinking in particular of Tianze, a young fellow who has been mentioned on this blog in the past. For an astonishingly long time now, officious government agencies in the UK have denied Tianze and his parents their basic human right to make decisions concerning their own affairs. They are denying him his freedom, as if he were a criminal, despite objective evidence of the harm this action is causing.
As I said before, complications have a way of creeping in. A family starts out on a pure quest to help their disabled child. It’s certainly sad enough when they bump into the limits of human knowledge and ability, and are unable to move their child closer to the wellness he deserves. Other frustrations—fatigue, penury, illness—may be unavoidable facts of life. But I would redouble those frustrations before I willingly ceded power to an agency that might never give it back.
Clicking the above image will take you to a video made on behalf of Tianze and other kids in the same situation. I’m sharing it because I perceive a trend in which we as a society are ever so slowly handing over control of our lives to unaccountable functionaries. If we continue doing this, we will never get it back.
Nor, I suspect, will our original problems be any closer to resolution.