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Archive for November, 2012

“It doesn’t have to be like this. It can be better.”

The divide between what we know in our souls “could be” and “what is” can be both the most motivating and devastating of perceptions. For Will, this chasm was both; in an endless cycle of pain, frustration, anger, and – always – hope.

His knowledge of himself and the vision others held of him were so vastly different that he often despaired of bridging the gap. But his need to be known as he was, and to have his potential recognized and respected drove him, to his last conscious moments, to keep trying.

Imagine being a member of a group held in appallingly low regard, discriminated against and infantilized, trivialized and mocked, patronized, ignored, and discarded. Imagine having little or no idea of what your rights are , and fearing you could be imprisoned – for life – at any given moment. Your fears are not irrational; you’ve seen it happen to others. Imagine having your ideas scorned and ignored, your hopes and desires laughed at. This was the world Will described to me, the world of people with developmental disabilities, as he experienced it. Being “retarded” meant having your labeled identity used as an epithet meaning stupid, worthless, inferior. That label determined everything, every detail of your life. Your freedom to control the most elementary and private aspects of your living situation were contingent on variables that were out of your control, and even hard fought freedoms could be erased without warning.

Where would he live? What sort of job would he work at? What meals could he eat? Who could he love? All of these choices, Will felt, had been pre-determined by others due to a fact of his existence that he was not to blame for. Worse, he was and had been deprived of the tools he needed to gain the skills that would lead to independence. His parents had tried: they had put forth enormous amounts of energy and money to procure the best educational opportunities and support for him. What they could not control was the fact that the field of “special needs” schools and later, organizations for adults, are infested with predators. At the top of the hierarchy are the administrators – in the case of the organizations Will was involved with, these were well paid individuals (the former CEO of the Ray Graham Association had a salary and package approaching a quarter of a million dollars). The “hands on” individuals, the aides and support providers, in contrast, were overworked, undertrained, and vastly underpaid. Turnover was high, motivation low. And running through it all, like a malignant spirit, was the fact that continued profit was ensured by perpetuating dependence – at the cost of the human spirits and dignity of the “clients.”

I could give a hundred examples. Will told me stories of humiliation, degradation, and pain that he’d experienced from his earliest memories. But they were really the same tale, same plot, only the details varied. And it was no coincidence that Will identified so closely with the most oppressed, most wretched, always. Slaves, prisoners, the homeless – these were the people he felt were his brothers, the ones he felt he understood and who would understand him. He took great hope from the victories of others, and from his own – the degree of the victory was unimportant, because even the smallest meant that more were possible, and if more were possible, then ultimate victory, too, was never out of reach. But the pain of this world was ever present, and any interaction with others held tremendous risks – rejection, humiliation, discrimination. He suspected that real justice was unlikely to be found in this life, and had hopes for the next one, where, he often said, “I won’t be disabled anymore.” When he got sick, and saw the loss of so much he’d fought his entire life to gain, for serious illness strips all of us of a degree of autonomy and independence, and for Will, this was infinitely painful as they had been so hard-fought and won, he hung on to that hope.

While it’s true for all of us that alienation and pain are an unavoidable aspect of existence, it’s likewise true that all of human history has been a record of our attempts to overcome these sufferings. The pursuit of independence and justice are the catalysts that drive human action. For people with disabilities, this fight has only just begun. All of us need to stand with them, in solidarity, and make sure that those who receive private and tax dollars to assist in this fight do not betray that vision. Will told me, in one of his frequently voiced and succinct flashes of brilliance, “It doesn’t have to be like this. It can be better.” Which is, after all, the vision of all liberation movements, everywhere and in every time.

“There ain’t no room for the hopeless sinner / who would hurt all mankind just to save his own

Have pity on those whose chances grow thinner / there ain’t no hiding place from the kingdom’s throne…”