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Archive for February, 2013

“The truth is, everyone is going to hurt you. You just got to find the ones worth suffering for.”

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.