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Archive for May, 2013

Live free and go out like Elijah

Moral dilemmas fascinated Will. He was like a coiled spring that just kept tightening, gathering more and more stored energy – he knew where he wanted to be; it was simply a matter of time before he released a torrent of determination, frustration, anger, and that unfailing vision to reach that place. In the meantime, his mind roiled with scenarios. When was it okay to lie? How should you treat others, and expect to be treated?  What was  reasonable to expect from a boss, and what obligations did the government have towards its citizens? What was cheating, and was it an absolute? Did the end justify the means? Was being homeless preferable to being in a group home? What were the boundaries of privacy, and what should one give up to be safe?

Ray Graham provided Will with much to consider. He kept himself carefully apart from almost everyone else in the organization, all the other “clients.” This was not new behavior; he’d avoided “Special education” students in school as well. Will was loathe to accept that label and certainly didn’t want to belong to any club that would have him for a member if it meant labeling. He got a reputation, among the staff and “clients” alike, for being prickly, “difficult” and for revealing little about himself. He sat back, observed, and calculated the best way to reach for freedom. He was guarded, but missed very little. Always watching, always listening, always evaluating, pushing, fighting for freedom.  And he watched one story play out that fascinated him.

Lacy was a woman about Will’s age. She lived in Sunrise Courts, the group home that Will fled as fast as possible. In an act of self-expression that was not generally encouraged, Lacy had a goldfish in her room. She was responsible for the care of the fish, Will explained, but she also had an “internal bank account.” This mean that Lacy’s Social Security Disability check was held by Ray Graham staff in an account on her behalf and she could not spend money unless they doled out to her. One weekend, Lacy ran out of fish food, and the Sunrise Court staff, shorthanded as usual, could not or would not help her obtain money to purchase more. So Lacy went to a store and shoplifted some. (Interestingly, under Jewish law, this may well qualify as a moral act, since it was done to save a life. But Roselle doesn’t consult rabbis in law enforcement matters.) She was arrested, and Ray Graham staff had to accompany her to court. Lacy, like Will, fell into that ambiguous category that presents such challenges to our culture – not quite able to live completely without support, but not obviously “disabled” either – and as such, at great risk of both exploitation and police problems. According to Will, the judge instructed the staff that they were to make sure Lacy always had sufficient money for incidentals in the future – in other words, to do the job the state of Illinois was funding the organization to do and Lacy didn’t get into any real trouble.

Will’s analysis of the matter was somewhat along the lines of “you break it, you buy it.” They wanted to control Lacy, they had an obligation to make sure that they did a good job of meeting her needs. The judge ruled correctly, he felt. But he’d observed hundreds of other incidents that, since they didn’t result in arrest, never yielded such a just hearing. He didn’t let Lacy off the hook, though – not by any means. Ray Graham had also tried to impose an “internal bank account” on him, and he’d fought back with resourcefulness and focus that were pretty breathtaking, really, wresting control of his finances from them and never giving them up – to anyone again. The last time Will ever went out of the house, excepting his final trip to the hospital, was to visit the bank and write a check to pay his rent. He had ill-concealed contempt for anyone who didn’t fight back against the ether that sought to anesthetize the disability community with “care,” care that robbed individuals of their autonomy and exchanged essential liberty for the illusion of safety. It was a harsh attitude, but common enough among freedom fighters. And that label is one that, when I mentioned it, he was willing to embrace. He was going to live on his own terms, to the end, and he was going to leave the same way.


May Day – No retreat, no Surrender

May First – a special day for a multitude of reasons

May Day is recognized around the world as a celebration of international workers’ solidarity. This event, which eventually produced the momentum for the eight-hour day and the other basic rights of workers (under attack again today) began in Chicago, sparked by the deaths of the Haymarket Martyrs, scapegoated victims of agents provocateurs. Their courage is personified by the last words of August Spies, before he was hanged: ““The time will come when our silence will be more powerful than the voices you strangle today.”

It’s also Beltane – the change of the season, a celebration of the sun, of rebirth, of growth, the return of life – hope.

And May 1, 1965, was William Thanet French’s birthday. His too brief life reflected both the courage and vision of the Haymarket Martyrs and the hope and joie de vivre of Beltane.

Imagine this: For one day – just 24 hours – you have taken a medicine that makes reading incredibly difficult. You read, at best, at about a third grade level. Your math skills are similarly degraded. Another pill creates the physical and speech impairments that mimic a mild stroke, not quite identifiable as an illness but noticeable enough to mark you as “different.” Despite these challenges, you are plunged into a situation where you have two choices: perform the tasks of a normal adult with consistent competency or lose your autonomy – perhaps forever. Imagine trying, failing, trying again – and again. Think about how easy it would be to give up in despair, turn your life over to those who tell you that you likely won’t ever acquire the skills this culture insists are the most important attributes of an independent citizen. Try to balance your bank account, plan your budget, read the fine print on an agreement for a cell phone, negotiate social interactions, shop for your food, cook it, pay for your insurance. Don’t drop a ball – make one significant error and, like a goalie in a National Hockey League game, your error will be announced by the equivalent of a glaring light, and 40,000 people standing up and screaming at you. You lose – everything. Most importantly, don’t get sick. Not seriously sick, not ever, because the moment you can no longer care for yourself, you may find everything you fought for destroyed. Your independence, your freedom – gone. Your right to choose where you live, what you eat, vanished. You will be cared for by poorly trained, minimum wage workers who may or may not be particularly concerned about your well being – their supervisors, after all, have little concern for them.

Twenty four hours. Try it. Imagine it. Will lived it for about 400,000 hours. During those years of fighting, he encountered and vanquished some remarkably powerful enemies – the expensive private schools in Texas that left him abused and with PTSD, the public school system in Tucson that instilled in him a hatred of the word “special” in all it’s manifestation, and the Ray Graham Association, who spent years trying to ensure he never achieve his goals in order that they could continue to profit by his dependence. He fought the pharmaceutical company Bristol Myers Squibb, who enrolled him in a double blind placebo trial for their melanoma drug Ipilimumab, randomized him into the placebo wing (by all indications), ensuring his stage III melanoma advanced to stage IV, and then refused him access to the actual drug under their compassionate use program when it proved effective but was just short of FDA approval (It’s now approved, marketed as Yervoy, and cost $30,000 per infusion).

All of the institutions that exploited Will tried, unsuccessfully, to strangle his voice. He kept speaking out, kept fighting. He never faltered, never once considered laying down his weapons and surrendering. No retreat, no surrender, and we fight on for him.