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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.