“Great spirits have often overcome violent opposition from mediocre minds”, said Albert Einstein, who presumably knew a thing or two about the subject.
Will, who never stopped using the language of prisoners to describe himself and his goals, faced a barbed wire tapestry of opposition. The issue of autonomy, full inclusion, and self-determination for people with disabilities has a long, shameful history. Not too long ago people with disabilities were labeled as cursed by God. They are still often segregated and infantilized by the well-meaning – and not so well-meaning. The fight for independence often starts at the first hint of self-awareness and doesn’t end until death.
Will was aware he was treated differently than his siblings, both by his parents and by the community. Parents of children with disabilities have tremendous fears – well justified fears – and want to protect their children. Children with disabilities – like all children – chafe under the restrictions that come with being kept safe. In Will’s case, he was extraordinarily sensitive to labels and segregation. He hated them, at times he responded angrily – even violently – and so loathed the implications that came with them that he found it difficult to form any relationships with other people so labeled. He didn’t want to belong to any club that would accept him as a member, to paraphrase Groucho Marx. As an adult, he turned his anger inward, sometimes with upsetting consequences. He formed no friendships with his special education classmates and none with members of the Ray Graham Association for Persons with Disabilities. He remained extraordinarily guarded; he trusted few – and only after they had proven themselves indisputably trustworthy.
When he was diagnosed with cancer despite a lifetime of carefully avoiding cigarettes and alcohol, eating a carefully chosen, healthy diet and exercising daily, he felt twice betrayed. It was hard to say which betrayal caused him more pain, but I remember him rendering me speechless when I was explaining the purpose of a scheduled brain MRI. He was staring out the car window, silent.
“Will this test be able to show them what is wrong with my brain, the problem that causes my disability? Will they ever be able to do anything about THAT?”
They were looking for brain metastases from the melanoma, which he understood – and he understood what such findings probably would mean. But cancer, even potentially terminal cancer, could hold no sharper arrows in its quiver than did his disability – or more accurately, the attitude of society towards his disability. His words were heavy with bitterness, but also – I believe – longing.
Will had only just begun to learn about the disability rights movement, though he’d long taken pride, rightfully, in his accomplishments. At Access Living, the Chicago based disability rights and resources organization, Will found people who shared his anger, shared his determination, and most importantly, showed him a path to empowerment. He so loved the place and the classes he took there that he wept when they finished. He wanted to live near there, he told me, he wanted to work there. He had just received the green light to begin training as a volunteer there when his health failed. He was able to return to Access Living only once more, to show his sister the place. He needed a walker by then, this still-young man who had, not long ago, ridden his bike and walked miles daily. The cancer had attacked his bones and he could not move without great pain. Access Living, the “first place I don’t feel misunderstood”, as Will put it, gave voice to all he’d felt, all his frustration, his bitterness, his humiliations and his hopes. There was a way to a better life, the kind he’d always envisioned possible. The solutions lay in empowerment from within, and unity with others who shared those goals.
“Emancipate yourself from mental slavery
None but ourselves can free our minds…”