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Archive for October, 2012

“If I can stop one heart from breaking, I shall not live in vain…”

The town I live in, the town Will used to live in, has a group home run by the Ray Graham Association for Persons with Disabilities. It’s called Sunrise Courts. It was Will’s home for the first two years or so after he joined them. He hated it. Understaffed by poorly trained people, it provided none of the supports Will and his family had been promised it would have. He fought to get out – fought ceaselessly – and left.

Because we are a small community, I know and encounter some of the other residents of the home regularly. I have changed their names here to protect their privacy. Ryan used to live in a much larger town, and in a condominium complex especially adapted for people with disabilities. Ryan had been in a car accident and is now confined to a motorized wheelchair. In the other community, he could get himself to his job, shop by himself, and utilize the much larger selection of community supports – a huge library, numerous stores, and so forth. But Ray Graham didn’t find it profitable to continue having Ryan live there, and moved him to Sunrise Courts. Ryan had to leave his job and the community that had allowed him to function quite independently.

Another resident, Gene, is a well known figure in town. He is always friendly and tries hard to be positive, but finds himself struggling to do so. No work in the workshops, no staff to transport him anywhere, he often looks unkempt and sometimes unwell. Recently he told me he was going to attend a free movie that he wasn’t even interested in. “It’s better than nothing….,” he offered, sadly. “But I wish there were work in the workshops. It gets boring….”

There are many “Ryans” and “Genes” at Sunrise Courts. Valuable human beings who have potential that is being ignored by the Ray Graham Association, all while they collect government funds to provide support for them. Do we define “appropriate support for persons with disabilities” as “minimally caring for their most basic human needs” while ignoring and neglecting everything that most of us would identify as essential quality of life issues? Will was a soldier in a war that he determined he would win or die fighting. And he won, but at great personal cost, and only after many years of suffering. It was a war he should never have had to fight at all. The goals he fought for should be rights belonging to every single human being on the planet. The war exists because there are those who find it is profitable to exploit the disabled and the taxpaying public with promises of paths to independence, skill training, and a means to a self -directed life, take public and private money offered on those promises, and provide only minimal custodial care while encouraging yet more (profitable) dependence. It’s social service “bait and switch,” with the victims being the taxpayers of Illinois, those who care about their loved ones with disabilities, and most of all, the irreplaceable human beings who are being warehoused in human parking garages instead of being supported while they grow into the unique individuals they were meant to be.

For Will, who changed my life in every possible way, all for the better, I seek justice. For all those who are still where he was, I seek rescue and restitution.

Fighting Towards the Promised Land

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.