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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.

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.

Will was consumed by the lack of justice he saw around him; had a visceral hatred of the unfairness he encountered personally and observed generally. Acutely aware of mixed messages and inconsistencies, he rarely forget an unfairness. One time, he said, “I was in the commons at Sunrise Courts and I took my shoes off. A staff told me it was against the rules. But the staff could go barefoot! I almost felt like saying, “That’s not right. It should go both ways….”

“A double standard,” I agreed.

“What’s that?”

“‘One rule for you and a different rule for me”, I defined it.

“And that doesn’t make sense. It should go both ways. At Sunrise Courts, they made it a rule that since the clients couldn’t have dogs or cats, neither could the staff that lived there. The staff weren’t too happy about that. And one time, this staffer named Rick was going through a divorce. He came to work with a bad attitude, and broke a window. I was glad that Ray Graham took it out of his paycheck and didn’t expect the clients to pay for it.”

“Did you think they would? Why should the clients have to pay? The staff person broke the window?”

“Because Ray Graham has a lot of double standards.” (once Will learned a phrase, he liked using it, making it his own. He particularly liked this one, since it succinctly defined one of his pet peeves.)

He went on to talk about the typical practice of Ray Graham staffers insisting clients “take responsibility” for their mistakes while taking care to avoid having to do the same for themselves. As was often the case, I sensed he was skirting something, trying to convey something far more important than the rather mundane examples of unfairness he was using to illustrate his points.

“Like the time Don made me sign a paper saying I would take responsibility for damaging the condo wall after I threw Mike’s furniture. When will they take responsibility for what *they* did?”

“Lets talk about that. A lot of times, when you did things like that – threw things or yelled – it seems that you didn’t feel anyone would listen to you.”

“They wouldn’t.” He was adamant. “They never did. They didn’t want to listen. That’s why I wanted to get the police….or maybe Steve Wilkos. I could go on that show and then *he’d* listen to both sides.” (Steve Wilkos is a former police officer who had a television show that usually featured Mr. Wilkos standing up for the powerless, intervening on behalf of the victims).

“You wanted back-up. Someone to help you explain your side of the story.”

The powerlessness of the individual in the face of an impersonal bureaucracy, represented by teachers, by parents, by staffers who defined him as “a handicapped person”, a 3/5ths man – this drove Will to despair and often, to rage. His lack of adeptness in articulating his views meant he’d lose any verbal faceoff; he knew that. It was the curse of Cassandra, to tell the truth and have no one believe you. He fantasized about garnering elusive backup, authority figures who would stand behind his views, buttress his truths with words that couldn’t be dismissed. Behind every tossed piece of furniture, every rage-filled voice mail, there was a raw and bleeding need for justice.  It wasn’t about particulars, it was about essentials.  The right to self-determination.  The right to decide his own life course, the right to the same opportunities and choices that define “freedom”.  These were the things he felt deprived of, along with the respect and dignity that come with being a free man.  His battle was a familiar one, and though it was lonely, it was also universal.

Ray Graham didn’t see it that way. “Anger management issues”, the staff psychologist (also a board member, in an interesting ethical pretzel) postulated. “Intermittent rage disorder”, the official diagnosis read. That’s a fascinating assessment. Is it a disorder if it’s based on facts? Is it an illness, a neurosis, if one’s anger is righteous? The flame of freedom blazed impossibly high in Will’s soul, always. I have little doubt that I’d have been bent to the ground, facing what he faced. The fact that he never was – not ever – never fails to astonish me, or cause me to pay stark tribute, daily, to what he suffered, and what he won.

You can blow out a candle
But you can’t blow out a fire
Once the flames begin to catch
The wind will blow it higher

There is nothing that inspires revenge, vindictiveness, vengefulness, use what term you will, as much as being made to feel powerless.

 
At one point, Will was diagnosed by the Ray Graham psychologist as having  “intermittent explosive disorder”. The definition for this disorder says that those afflicted with it react “out of proportion” to events or individuals; that they exhibit rage over seemingly minor events.

 
I was intrigued by this. Will’s clinical file, I noticed, mentioned the “trigger event” for one such episode, but failed to mention the numerous, complicated events leading up to the trigger event. When taken as a whole, his outburst – while not helpful – was hardly “out of proportion”. He felt his independence was being threatened, and surely that is a significantly powerful trigger for most of us?
Talking to Will about these events shed more light. There was a pattern, I noticed. The Ray Graham staff would attempt to keep him in, or return him to, a dependent situation. He’d resist. They’d persist. He’d react, and they’d use his reaction – his anger – to get him on psychotropic drugs, to document his irrationality and his inability to cope with normal stress. He persistently refused to take the drugs, and eventually refused to see their “in house” therapist, who was also a member of their Board of Directors, an ethically “iffy” situation at best (although he was keen to seek therapy for the issues he wanted to address, on the “outside”, as he would phrase it).

 
His roommate, the elderly “Mike”, had become ill and required a stay in a rehab facility after hospitalization. Mike was also his landlord. It wasn’t long before Ray Graham staff approached Will to paint a bleak scenario. Mike might not be able to return to the condo. In that event, Will would need to return to the “group home”, the hated “Sunrise Courts”. Will, who’d made it clear to me that he would not live in such a place ever again, regardless of what his other options were (and he cited both homelessness and suicide as preferable) did not take such threats – and that’s what they were, for certainly the Ray Graham staff were aware of his feelings – lightly. Will’s eventual response, after repeated threats, was to pick up a couch and toss it. Naturally, an “incident” report followed and more pressure to deal with his “anger management problem” via drugs.

 
But that incident was, as I said, part of a pattern. Will’s independence was persistently threatened by Ray Graham staff, who represented an organization that would profit financially from moving Will (or any “client”) to a more highly supervised and less independent living situation.
“I fought back.  They didn’t like that..” – William Thanet French  .” –

Redemption Song

“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…”

Living on the outside

Will had several jobs during the years he was a client with the Ray Graham Association. He worked at a restaurant, a grocery store, a factory, a health club,  and finally, Target. The only way to avoid being warehoused at “the workshop” was to find an “outside job” (I never failed to be struck by Will’s use of prison language – he wanted “to live on the outside”, work “on the outside”). But finding a job was only half the battle. Getting there – transportation – remained key.

It always seemed odd that  the Ray Graham Association insisted on housing “clients”  in the suburbs of Chicago, where having access to a car is vital to independence. 18 miles east lay the city, with its myriad ways of getting around car-less. It was, after all, the main magnet that drew Will to Chicago – the chance to be free from relying on others for transportation. Most of us find that arduous in the short term. Car in the shop, or foot in a cast, depending on anyone else for relaying you to work, school, or stores is miserable. But for Will, it also was a stigma: one more way he felt segregated.

First, he decided to give driving lessons a try. He paid for private lessons, only to find the “instructor” more interested in questioning him in a prurient and inappropriate manner. He refused to answer the questions, and abandoned the lessons. Besides, like many people who try to learn to drive after the blissful and ignorant presumption of indestructibility that comes with extreme youth, he found driving nerve wracking. Ray Graham group living situations were chronically understaffed, and highly unmotivated to help him master public transportation.  In any case, public transportation in the suburbs is horrendous. He got a job at a health club, five miles from his group apartment, and was frustrated to find that there was really no way to get there on his own – except to walk.

So he walked. Five miles there, five miles back, with eight hours of work between the journeys. Eventually he got a bike, and would ride in all but the worst weather (when he’d return to foot). Biking in Chicago in the winter is not always possible, but trodding through snow, though difficult, is do-able. The Ray Graham staff was not pleased. They insisted their concern was solely for his safety, but Will suspected otherwise.

“They didn’t like me getting to work on my own,” he told me. This was part of a pattern: encouraging independence was not financially rewarding for the organization. Dependence, on the other hand – that could garner significant public money. Will’s agenda diverged from theirs. With characteristic tenacity, he refused to bend to their preferences, and eventually, found a job – and rented an apartment – in train accessible locations. Driven by a “singleness of purpose”, to borrow a phrase from Lincoln, he harbored no doubts that might leave room for fear and compromise.

It was remarkable. Navigating the world is damn hard under the best of circumstances. Will, with his challenges, also had to fight a world that often treated him like an incompetent and unworthy half-human, and an organization that profited by denying him independence.

But Will feared dependence and segregation far more than he could ever fear the risks of freedom.