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In the story, the emperor was clearly naked.  No clothes, not a stitch, wearing only a crown.  This made it fairly easy for the uninitiated, the child unaware of the social implications of dissent, to point out the fact.  But what if the emperor is sometimes lavishly clothed, at others, wearing stained sweats, and, on occasion, out and about utterly stark?  Who would have the confidence to be sure that their eyes were not lying?  And who, only having seen the monarch richly attired, would believe the tales that others told about him?

That is the challenge we face with the Ray Graham Association.  Once upon a time, as some have attested, the organization was run by people who were well qualified and well intentioned, and who truly tried to fulfill its mission to help people with disabilities live richer, more independent lives.  Even today, it seems to us that for those requiring primarily custodial care, the most severely disabled, this organization does a good job in providing care in as homelike a setting as might be possible without one-on-one full time personal attendants.

But according to the statistics, 86.7% of people labeled cognitively disabled are in the “mildly disabled” category (http://mn.gov/mnddc/parallels2/pdf/80s/82/82-PMR-ARC.pdf).  Of that group, many can be transitioned, with proper support, into lives that are independent, requiring only minimal support.  These people are as acutely aware of their hopes, dreams, preferences, and anguish as any of us in the “non-disabled” community.  And while Ray Graham was undoubtedly a vast improvement over, say, the horrors of Willowbrook, “at least it’s not Auschwitz” is hardly an acceptable standard.  Will and his family were assured that he would receive training, education, and support to allow him to pursue the life we all hope (and deserve), one that embodied and reflected his tastes, his goals, his potential.  And that did not happen.  It didn’t happen by design, because the Ray Graham Association, like many other organizations of this type, benefit financially by failing to fulfill these promises.  Rather like for-profit health insurance companies who profit by denying us care, there is an intrinsic contradiction in their stated purpose and the fiscal reality.

In a culture where working people are viewed as “human resources” (is there a more grotesque term possible?  We’re in the same category as coal and bauxite), it’s not surprising.  It’s not inevitable, though, and it’s not unfixable.  We need to demand that there is real oversight of these organizations, these private agencies that receive the majority of their funds from public coffers.  It doesn’t exist – unless you are murdered by your agency, your complaint, as an adult, is unlikely to get treated with any urgency.  When the Ray Graham Association kicked Will off the list of people to be transitioned to the flexible Medicare Waiver funding, they lied about the reasons and then told us, confidently, that we had “no recourse and no appeal.”  They were confident with good reason.  Despite our documentation, despite our witnesses, despite testifying in front of an Illinois House Subcommittee hearing, we’ve yet to succeed in holding those who abused, neglected, and exploited him accountable.  People who know the truth are sometimes afraid to tell it.  People with disabilities, their friends and family, fear angering those in positions of power in the disability services community – and with good reason.  Their treatment of Will when he was dying illustrated that they are quite willing to act vindictively.  But fear will perpetuate the tragedy; only by speaking the truth and taking action for change will the system change, and the destructive parasites feeding off public money at the expense of some of our most vulnerable citizens be removed.

Will, acutely aware of what had been done to him and the reasons behind it, displayed breathtaking courage at a time when he knew it was likely he had less than a year to live; already in pain from the cancer that had spread to his liver and bones.  If this man, struggling with his own challenges and literally dying, found the courage and strength to  fight for himself and others we can hardly justify doing less.

 

So if you are the big tree
We are the small axe
Ready to cut you down (well sharp)
To cut you down

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 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.

James Kirkwood wrote an amazing book called “Good Times/Bad Times.” In it, one of the characters talks about his “paintbox theory of life.”

We come into this world and are issued a paintbox and told to go forth and paint pretty pictures. And so we try, and some of us open our boxes to find them stocked with innumerable paints of every hue and type, and a full range of brushes; everything one could imaginably need to paint. Others find their boxes stocked with only the basic primary colors; the paint equivalent of the “small” Crayola box, and a couple of brushes, adequate, maybe -  and do what they can. Some boxes are equipped only with one rather beat up brush and a couple of partly dried out tubes of paint. And still others discover that their boxes are so smashed and damaged they can’t be pried open at all. But the world still demands the same pictures of all of us, and belittles those who protest that the playing field is far from level.

What is a painter to do without paint? Van Gogh would use the money his brother sent him for food, for rent, for medicine, and spend it on the expensive oils that he ran through so quickly, applying them thickly on what would one day be masterpieces. But others saw this as selfish, irresponsible, even a symptom of the insanity they suspected he suffered from. He ended up sick and malnourished and in an asylum for the insane, dying long before he should have, partly by his own hand but partly due to a world that rejected him for pursuing what he knew was as essential as air, his art. How much poorer would the world have been otherwise…

Will was born into a life where he faced challenges that others do not. He struggled to learn to read and do math; his cognitive issues meant that he would need more help than most to live a life of self direction. But he pursued independence with the same single minded focus that Vincent did paint, and would – and did – willingly kick aside the always luring promise of safety if it meant giving up autonomy. Ben Franklin’s warning about “those who sacrifice liberty for security deserve neither” always came to mind when I’d watch him, in awe, struggle with determination and courage that seemed utterly without limit, to protect his hard won victories and pursue ever more.  He never once doubted the essential necessity of his pursuit.  As essential as air, that was clear.

Will was also born into a life that, on the surface, offered enormous privilege. His family was able to pursue the best medical and educational opportunities to  help him. And at every stage of this pursuit, they encountered those who were determined to exploit Will – and his resources – for their own profit, with no concern for Will’s best interests and wishes. It is a testament to the depth and breadth of Will’s personal courage and strength that he achieved the amazing victories that he did when one considers how extraordinarily difficult it has been to get the regulating authorities to consider evidence and act in cases of exploitation, abuse, neglect, and the rights violations of people with disabilities in Illinois. He was well named, because Will required an endless amount of it to live his life.  Taking his life as our example,  we will not give up in our pursuit of justice. Obstacles and stonewalling will not deter us and not discourage us. Will never doubted he would be ultimately victorious;  never doubted it because he knew, with certainty that victory would belong to those who could most endure. And his life had taught him just how tremendously much  he could endure. He had a habit of storing up platitudes, aphorisms, that helped him make sense of the senseless. Once I asked him, with skepticism, if he’d be able to handle the stress the fight to leave the Ray Graham organization was causing him. After some some thought, he finally told me, “Time will tell…”   And he smiled. 

In his Academy Award winning documentary “Best Boy,” director Ira Wohl succeeded in bringing to life the reality of the options open to the cognitively disabled at the time, their shortcomings and strengths, and the challenges faced by them and those who love them. In one of the most wrenching moments, Pearl Wohl is sitting at her kitchen table with Philly, her son and the subject of the film, and her nephew, director Ira. Pearl is joyous; Ira has been taking Philly on expeditions, something she and her elderly unwell husband are unable to do. Philly’s world is expanding. “You sure do love Philly!” she tells Ira. And to her husband, Max, “Look, Max, see how much they love Philly!” Suddenly, her face transforms, a switch has been flipped. Her eyes fill with tears and pain of the most visceral sort alters her features. Quietly, she whispers, “At least somebody loves my Philly.”

Medical anxiety of the neurotic sort often surfaces in women just after they have a child. This is no mystery. A mother’s first instinct may be to protect her child, but she knows that in order to do that, she has to be alive and well herself. If I die, who will love my child the way I do? No one, most of us conclude, and we are haunted by the specter of our child without us, abused, exploited, uncherished.

For parents with children who will need extra supports all their lives, this is a particular nightmare. In “Best Boy,” Philly had lived at home with his parents all but two of his then 51 years. Those two years were spent in an institution, a place where he was abused, by both staff and residents. Max, Philly’s father, describes going to visit one day to find the residents forced to stand outside in the cold, without coats or hats, for hours, while the facilities were cleaned. He brought Philly home that day, and home is where Philly then stayed.

But parents get old, and parents die, usually well before their children. Like Philly’s, other parents of children with disabilities are eviscerated by that fear – what will happen to my child after I’m gone?

William French was his parents’ youngest child. When Will was a teenager, his mother was diagnosed with lung cancer, a disease that would take her life when he was 18. She had spent those 18 years trying to ensure that Will would have the best possible chance at a happy and independent life, seeking experts and facilities that would enable him to maximize his potential, despite the limited options at the time. She insisted he be meticulously groomed , knowing that he would enter the world with multiple strikes against him and hoped that he’d be treated more kindly well dressed. When she died, Will’s father took over, driving him to and from night shifts at the hotel kitchen where Will worked, despite being retired and in ill health himself. Will wanted to live a self directed life, wanted, more than anything, to be independent. He and his father looked at many options, finally choosing, based on promises made, the Ray Graham Association for People with Disabilities in the Chicago area. With a trust fund funneling hundreds of thousands to the organization as incentive to treat Will well, and many hopes, Will’s father drove him to Chicago from their home in Tucson.

Will’s father died in 1997, when Will was 32 years old. He died, as did Will’s mother, deeply unsure about Will’s future. The Ray Graham Association, apparently unlike the support organization that Philly of “Best Boy” entered, did not live up to their promises. Will was not assisted in reaching his full potential. They did not take good care of him when he was well, when he was sick, nor when he was dying.

If I could speak to Carolyn and Jack French, there is one thing I would want them to know. Despite all the wrongs done to Will, despite the disappointments and exploitations and rights violations, I could tell them this one thing with absolute confidence – Will was loved. He was treasured. By his surviving siblings, by his friends, by his co-workers, by me – he was desperately, fiercely loved. I loved Will in a way that made losing him feel like I had been ripped to pieces and by some horrible accident, survived anyway. We all harbor profound regrets that we could not help him realize his dreams more fully, and we are all angry that those who were supposed to do that did not. We want accountability for them and we want justice for Will. Our motivation is simple.  We made promises that we intend to keep.

Will never accepted his rights being violated by the Ray Graham Association. It was one of the reasons he was such a persistent thorn in the side of the administrators and some staff; “I fought back. They didn’t like that too much…” He sometimes lacked information about just what those rights were, but he had an acutely sensitive sense of dignity and he was sharply aware of trespasses.

It was the hypocrisy as much as the actual violations that angered him. He would point out, deeply bitter, that “they tell you that you have rights, but then they won’t let you use them.” What were the rights that Will fought so hard to exercise? What is the true state of civil rights for people with disabilities?

Will, like many of us, needed help and support in certain areas of life. He struggled with banking and money issues at times (though he rarely failed to learn from past mistakes), he found it hard to navigate the bureaucratic maze of social services, and needed help reading and understanding many documents and directions. When given the required assistance in a non-coercive way, however, he was quite capable of making rational decisions that reflected his own values, priorities, and preferences. He didn’t resent such help, and readily accepted it when he felt confident the person offering it was not attempting to curtail his independence. Unfortunately, this was rarely the case with the Ray Graham Association. Their “help” was usually designed to maintain his dependence on them, increase it where possible, and to insure a continued flow of public and private funds to their own coffers. Sometimes, this goal coincided with Will’s best interests. Most of the time, it did not, and he recognized this and resented it. I could list dozens of examples, large and small, of such violations. His privacy rights were rarely respected, perhaps most egregiously in regards to the dissemination of medical information about his cancer. Repeated requests to the Ray Graham administration to produce releases that would have given them Will’s permission to discuss his medical situation with others were ignored by them – ignored, because such releases did not exist. Will wanted the right to make his own decisions about whom he shared such information with – and as his own guardian, this was a right protected by federal HIPAA laws. The laws that might impact their funding were given careful attention. Other laws – not so much.

“Our homes, not nursing homes!” is the slogan used by many who are fighting for the right of people with disabilities to be part of the community, to exercise their autonomy to the fullest possible extent, and to live a life of dignity and respect. But it’s about far more than staying out of a nursing home. It’s about not being treated as a means to an end for those who view vulnerability and the need for assistance as a financial opportunity. It’s about not fearing to fight for inalienable rights lest your treatment worsen at the hands of those who find such fighting inconvenient. It’s about being seen as a valued individual, who has much to contribute to society, and not an infantilized house pet, with only custodial care needs and desires. Will had dreams, and those dreams conflicted with his usefulness and profitability to the agency that had promised to help him fulfill them. Why is the public continuing to fund agencies that do not help each member associated with them reach their potential? What benefit, financial, or social, can possibly come from such a policy? We who recognize the moral and social wrongness of racial segregation must fight such segregation of people with disabilities. Separate is never equal, and wherever the goals of the agencies and organizations whose stated goal it is to help people with disabilities conflict with the rights of such persons to fully realize and live self-directed lives, terrible violations will occur. For every person like Will, who fought endlessly, there are many others who – for whatever reason – cannot or will not fight. Instead, they live silent lives of loneliness, despair, and even abuse. We need to fight for them and with them, in solidarity. Will’s courage came from deep within, and was always a remarkable thing. But I believe many others in his situation could find the courage to fight, too – if they knew they were not fighting alone.

The divide between what we know in our souls “could be” and “what is” can be both the most motivating and devastating of perceptions. For Will, this chasm was both; in an endless cycle of pain, frustration, anger, and – always – hope.

His knowledge of himself and the vision others held of him were so vastly different that he often despaired of bridging the gap. But his need to be known as he was, and to have his potential recognized and respected drove him, to his last conscious moments, to keep trying.

Imagine being a member of a group held in appallingly low regard, discriminated against and infantilized, trivialized and mocked, patronized, ignored, and discarded. Imagine having little or no idea of what your rights are , and fearing you could be imprisoned – for life – at any given moment. Your fears are not irrational; you’ve seen it happen to others. Imagine having your ideas scorned and ignored, your hopes and desires laughed at. This was the world Will described to me, the world of people with developmental disabilities, as he experienced it. Being “retarded” meant having your labeled identity used as an epithet meaning stupid, worthless, inferior. That label determined everything, every detail of your life. Your freedom to control the most elementary and private aspects of your living situation were contingent on variables that were out of your control, and even hard fought freedoms could be erased without warning.

Where would he live? What sort of job would he work at? What meals could he eat? Who could he love? All of these choices, Will felt, had been pre-determined by others due to a fact of his existence that he was not to blame for. Worse, he was and had been deprived of the tools he needed to gain the skills that would lead to independence. His parents had tried: they had put forth enormous amounts of energy and money to procure the best educational opportunities and support for him. What they could not control was the fact that the field of “special needs” schools and later, organizations for adults, are infested with predators. At the top of the hierarchy are the administrators – in the case of the organizations Will was involved with, these were well paid individuals (the former CEO of the Ray Graham Association had a salary and package approaching a quarter of a million dollars). The “hands on” individuals, the aides and support providers, in contrast, were overworked, undertrained, and vastly underpaid. Turnover was high, motivation low. And running through it all, like a malignant spirit, was the fact that continued profit was ensured by perpetuating dependence – at the cost of the human spirits and dignity of the “clients.”

I could give a hundred examples. Will told me stories of humiliation, degradation, and pain that he’d experienced from his earliest memories. But they were really the same tale, same plot, only the details varied. And it was no coincidence that Will identified so closely with the most oppressed, most wretched, always. Slaves, prisoners, the homeless – these were the people he felt were his brothers, the ones he felt he understood and who would understand him. He took great hope from the victories of others, and from his own – the degree of the victory was unimportant, because even the smallest meant that more were possible, and if more were possible, then ultimate victory, too, was never out of reach. But the pain of this world was ever present, and any interaction with others held tremendous risks – rejection, humiliation, discrimination. He suspected that real justice was unlikely to be found in this life, and had hopes for the next one, where, he often said, “I won’t be disabled anymore.” When he got sick, and saw the loss of so much he’d fought his entire life to gain, for serious illness strips all of us of a degree of autonomy and independence, and for Will, this was infinitely painful as they had been so hard-fought and won, he hung on to that hope.

While it’s true for all of us that alienation and pain are an unavoidable aspect of existence, it’s likewise true that all of human history has been a record of our attempts to overcome these sufferings. The pursuit of independence and justice are the catalysts that drive human action. For people with disabilities, this fight has only just begun. All of us need to stand with them, in solidarity, and make sure that those who receive private and tax dollars to assist in this fight do not betray that vision. Will told me, in one of his frequently voiced and succinct flashes of brilliance, “It doesn’t have to be like this. It can be better.” Which is, after all, the vision of all liberation movements, everywhere and in every time.

“There ain’t no room for the hopeless sinner / who would hurt all mankind just to save his own

Have pity on those whose chances grow thinner / there ain’t no hiding place from the kingdom’s throne…”

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