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Posts tagged ‘people with cognitive disabilities’

“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

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.