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Archive for January, 2013

“If you have come to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together.”

Will never accepted his rights being violated by the Ray Graham Association. It was one of the reasons he was such a persistent thorn in the side of the administrators and some staff; “I fought back. They didn’t like that too much…” He sometimes lacked information about just what those rights were, but he had an acutely sensitive sense of dignity and he was sharply aware of trespasses.

It was the hypocrisy as much as the actual violations that angered him. He would point out, deeply bitter, that “they tell you that you have rights, but then they won’t let you use them.” What were the rights that Will fought so hard to exercise? What is the true state of civil rights for people with disabilities?

Will, like many of us, needed help and support in certain areas of life. He struggled with banking and money issues at times (though he rarely failed to learn from past mistakes), he found it hard to navigate the bureaucratic maze of social services, and needed help reading and understanding many documents and directions. When given the required assistance in a non-coercive way, however, he was quite capable of making rational decisions that reflected his own values, priorities, and preferences. He didn’t resent such help, and readily accepted it when he felt confident the person offering it was not attempting to curtail his independence. Unfortunately, this was rarely the case with the Ray Graham Association. Their “help” was usually designed to maintain his dependence on them, increase it where possible, and to insure a continued flow of public and private funds to their own coffers. Sometimes, this goal coincided with Will’s best interests. Most of the time, it did not, and he recognized this and resented it. I could list dozens of examples, large and small, of such violations. His privacy rights were rarely respected, perhaps most egregiously in regards to the dissemination of medical information about his cancer. Repeated requests to the Ray Graham administration to produce releases that would have given them Will’s permission to discuss his medical situation with others were ignored by them – ignored, because such releases did not exist. Will wanted the right to make his own decisions about whom he shared such information with – and as his own guardian, this was a right protected by federal HIPAA laws. The laws that might impact their funding were given careful attention. Other laws – not so much.

“Our homes, not nursing homes!” is the slogan used by many who are fighting for the right of people with disabilities to be part of the community, to exercise their autonomy to the fullest possible extent, and to live a life of dignity and respect. But it’s about far more than staying out of a nursing home. It’s about not being treated as a means to an end for those who view vulnerability and the need for assistance as a financial opportunity. It’s about not fearing to fight for inalienable rights lest your treatment worsen at the hands of those who find such fighting inconvenient. It’s about being seen as a valued individual, who has much to contribute to society, and not an infantilized house pet, with only custodial care needs and desires. Will had dreams, and those dreams conflicted with his usefulness and profitability to the agency that had promised to help him fulfill them. Why is the public continuing to fund agencies that do not help each member associated with them reach their potential? What benefit, financial, or social, can possibly come from such a policy? We who recognize the moral and social wrongness of racial segregation must fight such segregation of people with disabilities. Separate is never equal, and wherever the goals of the agencies and organizations whose stated goal it is to help people with disabilities conflict with the rights of such persons to fully realize and live self-directed lives, terrible violations will occur. For every person like Will, who fought endlessly, there are many others who – for whatever reason – cannot or will not fight. Instead, they live silent lives of loneliness, despair, and even abuse. We need to fight for them and with them, in solidarity. Will’s courage came from deep within, and was always a remarkable thing. But I believe many others in his situation could find the courage to fight, too – if they knew they were not fighting alone.