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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.


“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 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.