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Archive for August, 2012

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…”

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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.

Will’s fight: a six minute video on Will’s battle with the Ray Graham Association

“One must work and dare if one really wants to live.”

And then there were the workshops.

When Will first walked into Access Living, a fine and truly dignified organization dedicated to advancing the rights and full integration of persons with disabilities into the community, the very first question he asked was “Do you have workshops?”

They most certainly did not, as “workshops” (which rarely had work) segregated people with disabilities, seldom taught skills that helped people transition into the community at large, and paid substandard wages.

Will was sold on Access Living from that single answer, though the rest of his experiences there were equally empowering.

It is entirely possible that for some people with more severe disabilities, “sheltered workshops” are, or were, a fine thing. That is a question for another analysis. But for someone like Will, who’s abilities had proven he could live largely independently and hold an “outside” job, they were a human parking garage. He hated them, passionately.

“So”, he told me, “every day, whether we were sick or not, they made us go to the workshop. Ray Graham didn’t want to have to have someone stay at Sunrise Courts with us if we didn’t go. But there was almost never any work.”

What would people DO there when there was no work?

“Some people did nothing. Some people watched tapes on the tv. Or played games.”

So what would he do?

“I’d bring my notebook and practice arithmetic. Or writing. Or I’d read.”

Five days a week. 7 hours a day. Month after month after month. And getting to and from the workshop, that was almost as bad as being there. Will, who was acutely sensitive to being labeled, having experienced the pain of being limited and defined by those labels, segregated and isolated by them, found himself riding in a large van with ‘FOR PERSONS WITH DISABILITIES” inscribed on the sides.

“Why did they have to put that on the van?”, he asked me, angrily, rhetorically. I tried to imagine myself in similar situations. “THE CITY OF CHICAGO BUS FOR PEOPLE WHO  HAVE TROUBLE DRIVING IN THE CITY AND CAN’T AFFORD A TAXI”. “THE COMMUNITY HOSPITAL COURTESY VAN FOR PEOPLE TOO SICK TO DRIVE AND WITHOUT FRIENDS OR FAMILY TO TAKE THEM.”  Having a disability was not a weakness or a flaw, but it was a label that was often used to discriminate and make individuals feel they were different in a negative way – certainly Will loathed being defined by his challenges alone.   I told him I really didn’t know. I suppose it was advertising – of the most insensitive sort imaginable.

Will had had jobs in the community before coming to Ray Graham, and he’d often been “Employee of the Month”. He worked hard, he worked well, and he went to extraordinarily lengths never to be late or absent. He saw a natural dignity in work well done, and was very driven to learn new skills. The same strong, clear vision that directed him in pursuing better reading skills his entire life (up to and including the last lucid days before his death) meant that sitting in front of the video tapes or pointless games the “workshops” (now renamed “Community Learning Centers”, equally deceptive misnomers) was impossible. He had to get out of there. And having gotten out, he would never, he swore to himself, no matter what the alternative was, return. He was not suicidal, not ever. But he was clear on this: He would not return to a life half lived, he would not voluntarily surrender himself to being an exhibit in a human petting zoo. He would, he told me, far rather be homeless – and he meant it. He was fascinated by the homeless, sharply aware of their plight, open to their conversations at coffee shops, libraries, and train stations. He had extraordinary sensitivity to their stories, a willing listener. He was learning, I thought, trying to ascertain how they were surviving. It would never come to that, of course. But I found it sharply poignant and extremely telling: Will was determined that he would choose anything, homelessness, even death, over the loss of dignity and independence he experienced

“I don’t give up….”

May 1, 2010 was Will’s birthday, his 45th. It should have been a new beginning for him. After 22 years of struggle, he’d left the Ray Graham Association. He’d been granted Medicaid waiver funding, hired a personal assistant. He had a plan mapped out – reading and language therapy, cooking lessons, computer lessons. A new beginning was indeed promised – instead, it was the beginning of the end.

The single agent chemotherapy had failed; we’d known that for six weeks. We were waiting for a clinical trial to open up in Chicago. In desperation, I’d located the same trial in New Jersey and had begun preparations for taking him there. It was becoming increasingly clear we could wait no longer. He kept working, part time at a retail store, long past the time most people would have given up. I cannot imagine how he did it. His determination left me astounded, always. On the last night, I picked him up to drive him home. We’d driven a few blocks when he asked me to stop the car. He got out, violently ill. He was never able to return to work. On May 3, we took him back to his oncologist. No more delays were possible.

She examined him, told him he needed to be hospitalized, and then Will and I returned to the waiting room while his two siblings, both fighting serious health issues of their own, and his friend and advocate, Kevin, remained behind to speak to the doctor. They came out looking shaken. I rushed to Kevin. “He’s very ill…,” Kevin began. He held up three fingers. “Three months?” I asked, shocked – even though I should not have been. “No – weeks…” Kevin said, quietly.

Unless the “Hail Mary” treatment worked, there would be no time for any of his plans. And so he began “Biochemotherapy”, a regimen of three chemotherapy drugs and two immunotherapy drugs that, we hoped, would finally arrest the growth of this disease long enough for him to begin a clinical trial with a new drug that promised better odds, offered more hope. Nights of rigors, chills so violent that only morphine shots would ease them, emergency EKGs to monitor racing heartbeats, pleural effusions and capillaries leaking fluid, fevers and rashes and endless pain. And Will never complained, not once. He had fought to get out of Ray Graham, he had won. He was not giving up the promise of a real future, a future of self direction, without the fight of his life. And so he fought, seven times down and eight times up. Again and again.

Ray Graham continued to stonewall his lawyer’s demands for the return of his documents, continued to neglect Mike, his roommate. Will survived the first round of biochemotherapy and returned, along with a team of his friends and family and his personal assistant in support, to his condo – HIS home – surrounded by the people who loved him, whom he’d chosen to care for him – and fought this illness on his terms. None of which would have been possible had he stayed with the Ray Graham Association.

“A flower bloomed already wilting. Beginning its life with an early ending.”

In January 2010, Will learned that his melanoma was no longer stable. It had grown – significantly – and was now in his liver. Unless you’ve experienced this, it’s hard to understand just how it feels, receiving news like this. A strange fog of unreality descends; you are walking underwater. Fragments of sentences penetrate: “still some options…”…”obviously not what we’d hoped…” and you register them, but all you really understand is that this is very, very  bad.

And so Will and I went to war with the cancer, seeking out clinical trials, arranging for DNA tests for mutations that might gain him entry into certain trials, calling hospitals and melanoma specialists and pharmaceutical company trial boards and signing up for some standard, unlikely-to-work-but-currently-available chemo for the time being. And Ray Graham went to war with Will, apparently determined to prevent him from gaining access to Medicaid Waiver funding, which would enable him to leave. They had other plans, which they’d revealed to Will after he was first diagnosed: if he got “too sick”, he could simply move into one of their group homes. The same type of understaffed, poorly run group home that didn’t help him when he was healthy – and Will was determined that would never happen. Ray Graham would get a higher rate of state reimbursement for Will in such a program; there was a strong financial incentive for them to see this happen. Aware he planned to leave Ray Graham when he got Medicaid Waiver funding, there was no financial incentive whatsoever to assist him in procuring that. And if Ray Graham ever acted out of a non-financial motive, we hadn’t been around to witness it.

The chemotherapy made Will tired and depressed. And having cancer in your liver (and bones, and lungs) also doesn’t do much for one’s stamina and disposition. We – Will’s friends – tried to shield him from Ray Graham’s attacks while simultaneously keeping his health and spirits as intact as possible. Kevin, the friend whom Will had designated to deal with Ray Graham and the Medicaid Waiver fight, kept insisting that Ray Graham contact him with their various issues, as Will grew upset and agitated when they would call him. Ray Graham kept ignoring this, apparently blocking Kevin’s email address in their determination to dismiss Will’s wishes and pursue him.

It all exploded in the very early spring of 2010. Will’s health began an ominous decline – was it the chemotherapy or the cancer? We feared both. Ray Graham announced they’d dropped Will from the group conversion list of clients applying for Medicaid Waiver funding, citing three, demonstrably false reasons for doing so. Their decision was final, and there was no recourse or appeal, they informed us, with all the compassion of Julius Streicher. Will’s only chance now was the Emergency Medicaid Waiver application.

And miraculously, it was not only approved but approved in record time. Well, I suppose characterizing it as “miraculous” belies the definition most people would accept. The miracle here seemed to be that there were people in the Illinois state government who heard our pleas and cared enough to act, and act fast. And Will left Ray Graham, though they continued their harassment and rights violations for many months, ignoring his requests for the returns of his documents, failing to provide adequate care for his roommate, and engaging in other outrages. But Will was out of their reach, at last, and had obtained the kind of funding that would finally let him pursue his dreams.

Except that by then, it was too late.

A war with two fronts

In September of 2009, Will’s oncologist told him that the two rounds of Interleukin 2, an immune system stimulating treatment that is so brutal it is usually administered in an ICU setting, had arrested the melanoma. We were thrilled; Interleukin 2 (one of the “best” approved treatments for metastatic melanoma) has a 20% response rate. The odds were not great, but they were worth taking. He had suffered terribly during the treatments but worked hard to regain strength. Perhaps Will would be one of the few “complete responders” and would get a miracle. His next scan was scheduled for January 2010.

Will made the most of the time. Friends had helped him enroll in a class called “Stepping Stones”, run by Access Living, Chicago’s excellent resource and support organization for all persons with disabilities. Will was applying for Medicaid Waiver funding that would enable him to, at last, leave Ray Graham and direct his own services. He made plans – at Access Living he finally had instruction in computer use, and was excited by the possibilities that offered. He had long wanted to improve his reading and language skills and we were lining up special help for that. He was always interested in exercise and nutrition and hoped to increase his cooking skills. His 22 years with the Ray Graham Association had done nothing to help him, he felt, with the things that were most important to him. Worse, they had undermined his efforts to gain more independence. He wanted out. He designated a friend, Kevin, to deal with the administrative aspects of the Medicaid Waiver application (he was applying for the funding both on Ray Graham’s group list, as the grant-funded program he was in was being ended, and Ray Graham urged all effected clients to do this) as well as on an expedited emergency basis. He hoped the emergency funding would be approved, as that would allow him to leave faster – and even with the good news he’d received, he sensed time was short. If he got sicker, he knew, Ray Graham wanted him to re-enter a “CILA”, or group home, the same sort group home that did nothing to help him when he was healthy. He was absolutely determined to never let that happen.

That fall and early winter was a beautiful time for him. Between classes at Access Living, trips to the city to explore interests, and planning for the future with friends, he was optimistic and excited. There were frustrations – Ray Graham had removed his “clinical book”, a file containing many documents (personal as well as related to his time with the organization) from his condominium, apparently to process his part of their group Medicaid Waiver application. But he needed documents that were in that file – a social security card and birth certificate, and troublingly, Ray Graham kept insisting they did not have these documents (later, after the advocacy group Equip for Equality and a private attorney intervened, the documents were returned by Ray Graham). But Will saw an exit to his time with Ray Graham approaching and remained positive. Ray Graham, in the meantime, had realized that Will intended to leave as soon as his Medicaid Waiver funding was approved. They were angry. They were likewise upset that Will was asking them to deal with his designated advocate whenever possible.

He was feeling pretty well, and life seemed possibility – laden. But the January scans ended all that, with the devastating news that not only had the cancer grown again, it was now in his liver. Sitting in the oncologist’s office, waiting for her to return with some information about the next steps, Will’s cell phone rang. Still in shock, Will answered it. On the other end was an administrator from Ray Graham, demanding Will come to a meeting to discuss “modes of communication” – the next day. Will said he’d call back – and thus began a whole new level of hostility and attacks from Ray Graham. The meeting never happened, as Will was getting a brain MRI the following day, and from that moment on, the fight for his life became a full blown war. Unfortunately, Ray Graham chose that moment to escalate their own war against Will, this time apparently to make sure he did *not* receive the Medicaid Waiver funding that would allow him to leave.