Something went wrong just before my friend Will was born, in a small city in the midwest, in the mid 1960s. The most likely cause: a mild prenatal stroke. It did not cause enough damage to be immediately apparent; it took time before his parents realized that there was something amiss with their youngest child.
As a parent of a child with significant learning disabilities, it's hard for me to be too judgemental about parental response to discovering "there's something wrong with my child". It's hard to explain what kind of fear and grief that revelation brings. Still - I cannot begin to understand what Will's parents did next: they sent their five year old over a thousand miles away to a boarding school for emotionally and behaviorally troubled children.
I couldn't hide my reaction from Will when he told me this. "How could they do that?" I asked, with real horror in my voice. Will said, "I wouldn't calm down and do what they wanted me to do." He was allowed to call home once every two weeks. He was beaten for not eating everything he was given on his plate. And still, he got off easy. Brown Schools in Texas
When he was 13, his parents brought him home. They enrolled him in the local public school's special education program. Having received no appropriate language or physical therapy, having received virtually no academic instruction, he did abysmally on the evaluations and was labeled "trainably mentally handicapped." He was placed in a non-academic program, with a teacher who spent much of his time shouting at the students. Will, who had serious PTSD symptoms from the years of abuse at the Brown Schools, withdrew further.
At 17, his family moved and finally, Will caught a break. His new teacher recognized that he'd been misdiagnosed, mislabeled, mistreated. She coached him in reading, in math. Most importantly, she went to bat for him with his family, insisting that he would one day live independently and needed to learn self care skills - cooking, laundry. They refused. The family was wealthy, and had staff to do such things - and besides, their son would never live on his own. He was "retarded". They knew this. And they told him this as well, frequently. Eventually, the teacher simply taught him these skills on her own - and he learned them easily and well. I spoke to his teacher. She described Will as "beautifully dressed, from an obviously privileged family. And indescribably lonely." She told me of Will wandering into the country club to attend the parties of strangers, as he was largely excluded from his own family's celebrations and gatherings. Of a teen with no friends, not allowed to associate with neighbors, lest he "annoy" them. Of his alienation from his classmates, with whom he had little in common, and his continual feelings of rejection in a family who saw him as flawed - and frankly embarrassing.
At 22, students "age out" of the public special education system, and decisions have to be made. For Will's father (and this was a patriarchal family; his father's word was as law) there was only one choice: a group home for disabled adults. More labels, little freedom - Will could not endure the thought of this. And in one of many examples of his courageous resourcefulness, he came up with what seemed like a good alternative: an organization for adults with disabilities that promised to foster independence, assist in finding "regular" jobs, and integrating their "clients" into the community. It was a chance, he thought, and he took it.
Things are rarely as they are described in advertising brochures, and this organization fell short of his hopes. His first stop was a group-home-by-another-name, and he was put in a sheltered workshop. There, he did piece work for substandard wages. Those were the good days. On the bad days, there was no work and most of the clients sat and did nothing for six hours. Will brought paper and practiced math problems.
He had to get out of there, he knew that. He pushed hard to get a "regular" job and into different housing. After six months, he found a job and moved into a private apartment with another client. Things were better. But there were still many problems. The organization got more funding for the more dependent clients, and they discouraged too much independence. It was a continual fight to retain his hard fought victories. When he insisted on making his own way to work - biking, walking, or taking the bus - instead of depending on staff to drive him, he was criticized persistently. His family continued to be an occasional presence in his life, checking in to criticize his hair, his clothing, his food and housekeeping choices. They showed up, uninvited, at his annual "staffings", meetings between the client and staff to discuss progress and problems, and urged the staff to exert more control over Will. It was humiliating and degrading, but he kept fighting.
He received no further educational opportunities or vocational training. He received no treatment for his PTSD or language or physical therapy. He had to be vigilant about protecting the victories he'd won, because the organization persisted in trying to get him into a more dependent - and thus more lucrative for them - situation. He grew angry at times, frustrated, and found himself being taken to the organization's psychologist. This person, who was also a member of the board of directors, had questionable expertise in the field of developmental disabilities. Will, in one of his bitterly ironic, but humorous, accounts, told me this:
"She said I was getting angry and should take drugs to control it. I told her I was angry because of what was happening, and I said I wouldn't take drugs. So she got angry."
His life was difficult and lonely, but it was, mostly, his own, and he lived it as best as he could. He joined health clubs and learned about exercise and nutrition; he continued to try and improve his skills and learn about the larger world. He disliked Bush and his wars of choice, he was hopeful about Obama - particularly hopeful that Obama would fix the problems with expensive and often unaffordable health care bills. He worried about the homeless people he encountered and debated the best way he could help them - did one give them cash or not?
One day, about 18 months ago, he noticed the back of his head was bleeding. He was concerned but, always worried about the medical bills that resulted from any visit, delayed visiting a doctor. "I didn't go right away. But I should have", he told me. He told staff members, who also didn't recognize the situation as dangerous. Many DSPs, "direct support providers", are untrained, underpaid, and frequently poorly educated. It's hard work and the motivation to do it well is not easy to find. Good people usually burn out. When Will did get to the doctor, he learned that he had stage III - and eight months later, stage IV - melanoma. He fought back, despite having fears of loss of autonomy added to the normal fears of loss of life. He underwent brutal and risky treatment, and not for the first time, he beat the odds. His last scan, four months ago, showed the cancer in remission.
In the interim, thanks in part to the intervention of my wonderful friends in the progressive activist community, Will has been able to take classes in the history of disability rights, computer skills (he's getting a computer today) and transitioning to a fully independent life. He's learned to take public transportation in the city, opening up a whole new range of options. He's applied for that Holy Grail of social service funding, the portable and flexible Medicaid Waiver. It would allow him to select his own services, hire his own support staff, and get educational and vocational training. He's scheduled to get counseling to help him deal with the cancer (another issue never addressed by the organization for disabled adults that he belongs to - he was left wholly alone to deal with the emotional aspect of this disease).
But in two weeks, he is scheduled for another scan, and like all cancer patients, these scans are a recurring "Lady or the Tiger" event. The results determine - well, everything. He's scared. He's nervous. He's hopeful, and he's scared of being hopeful.
The poet Archibald MacLeish, reflecting on a friend's young son's courageous fight against tuberculosis, said, "There was something fierce and imperishable in him." When I consider Will, who has remained optimistic despite a life that sometimes resembled a gothic horror novel, the same words come to mind. Will you join me in praying, sending energy or just good wishes to him as he faces his upcoming scans? And in reaching out to at least one of the battered, betrayed, and broken among us, make their life a bit better in some way in this new year.