Survivors of societies fractured by slavery and segregation have some commonalities with people living with disabilities struggling to live self-directed lives. One of the most profound forms of degradation and discrimination is the infantalization they face. The word “boy” directed at African American men has long been recognized as openly racist and intended to degrade, make the target “less than whole.” Will, whose immense personal dignity and pride left him acutely sensitive to the language and actions of others, saw this – the attitude that he was less than a man, less than an adult – as the most dangerous threat to his autonomy and certainly the one he resented the most.
Sometimes he expressed it through sadness. We’d be at a restaurant and the waiter would ask me what Will wanted instead of addressing him directly. A flash of pain would darken his remarkable blue eyes, turning them gray, and his mood would darken as well. Sometimes his pain emerged as churlishness – he’d lose patience with store clerks who spoke to him in a manner he recognized as patronizing. Other times, it would erupt in raw rage, like his reaction to being told by Ray Graham staff that he should return to the hated group home should his roommate be too ill to continue sharing their condo. Rarely, but charmingly, he’d occasionally use humor to needle those who neglected to notice he was an autonomous adult, like the sixteen year old at the fitness center who asked him why his “staff person” didn’t drive him to work out. (Will always rode his bike or walked the miles to the center). In response, Will looked around. “Where’s your mother?” he queried. “Should you really come here without her?” Triumph – “that teenager wasn’t too happy with me,” he told me, smiling.
Will’s goal – to be respected as an adult capable of directing his own life and pursuing his own dreams – is perhaps the oldest and most universal of human desires. He never stopped fighting to achieve it. And it was a war, no other word is really accurate. In a speech to the United Nations, Haile Selassie, denouncing the evil of racism, summed it up succinctly:
“…until the philosophy which holds one race superior and another inferior is finally and permanently discredited and abandoned: That until there are no longer first-class and second class citizens of any nation; That until the color of a man’s skin is of no more significance than the color of his eyes; That until the basic human rights are equally guaranteed to all without regard to race; That until that day, the dream of lasting peace and world citizenship and the rule of international morality will remain but a fleeting illusion, to be pursued but never attained…”
For over twenty years, the Ray Graham Association for Persons with disabilities had the opportunity and was richly rewarded financially by Will’s family and the state of Illinois to help him make it a reality. Instead, they pursued their own goal– to exploit Will and his situation financially with as little burden to themselves as possible. And for over twenty years, Will remained at war with this organization, fighting with a clear, single minded vision of victory and never wavering. Illinois is slashing budgets for human services. We have a moral imperative to make sure the dollars we do invest go to the highest possible purposes. Please help hold those who exploited, neglected, and emotionally abused him accountable. He never stopped believing in his own promised land, a world where his dignity would be respected, his work rewarded, his potential realized. For those who are still in the fight, for those of us who are dedicated to seeing all of our citizens have the opportunity to pursue their dreams, we deserve accountability.