I’d never known how instrumental Hillary Clinton had been in facilitating my disabled daughter’s mainstreaming in to our neighborhood school in the 1970’s.
Anne had been born with spina bifida and cloacal exstrophy and, at three, was walking with leg braces. If the braces were broken or if she had pressure sores, she used a wheelchair. Her pre-kindergarten IQ was estimated at 128. But because of her physical disabilities, she was required by the school system to attend a facility for handicapped children. The disability rights movement was then in its infancy. Many of us who fought to implement its vision were struggling novices embarking on a difficult journey into an unwelcoming world.
I’ve since learned that Hillary was even then working and advocating for us in three significant ways.
First was her work on what was then, I believe, Public Law 94-142, which forbade discrimination against disabled children and made our legal case for Anne’s attendance at our neighborhood school, only a block away from our house, instead of being bused to a segregated handicapped school many, many miles away. With the support of a legal team, we eventually won our case. At that time in history, it was not easy.
Hillary was also instrumental in seeing that Legal Aid services advocate on behalf of children who struggled to implement the new law. In the Seventies, this kind of civil rights advocacy was not only funded but was not means-tested. This meant that help was available to anyone and also that deep and broad expertise was developed in an area of law that was unlikely to be well served by private attorneys.
And third, Hillary herself personally assisted disabled students in receiving the education that was best for them, that would be provided “under the least restrictive conditions.” This work for change would cause a shirt in perception that over time has broadened and deepened cultural values. Once cultural values change, the strong arm of the law becomes only rarely necessary.
Advocating for change was not a popular thing to do. In my neighborhood, or probably yours. Few parents were supportive and among these I found some lifelong friends. Most, though, didn’t notice or care. Others were opposed to such bold integration. Disappointingly, the principal and many, perhaps most, of his teachers and staff, steadfastly disapproved. A few, though, were pretty wonderful.
I hadn’t, in the beginning, expected it to be so difficult. The first kindergarten teacher, whom parents affectionately called Miss Nanny, would have welcomed Anne. She allayed my fears about other children’s attitudes by saying “The children are like little sponges. They will absorb my attitude and will welcome Anne just as they welcome the Asian children in their class because I do.”
But Miss Nanny volunteered to transfer to teach in what was, because of persistent institutional racial discrimination, a virtually segregated school. The next kindergarten teacher Anne and I visited after Miss Nanny’s departure, said to me “Your child does not belong in a normal classroom.” I walked home with my little, tow-headed daughter, crying, an angry, over- reactive voice in my head shouting “Nazi, damn Nazi.” I have learned over time that such angry epithets do not help to implement change, that steadfastly working things through—eventually–does.
This was a time when newspaper letters were being written to the editor calling for the deportation of disabled people to their own island. Our neighborhood newspaper refused to publish photos of children in wheelchairs or with Downs Syndrome and asked that nondisabled siblings act as stand-ins for these children in publicity photos. The ACLU would not help me challenge this policy, a woman who identified herself as a volunteer calling to tell me that this was a community standards issue and we needed to organize protests.
Against the wishes of the school for handicapped children, I asked that Anne be allowed to attend our neighborhood school.
Anne’s year in a so-called normal kindergarten was challenging, even painful. Her new kindergarten teacher did not want her in the classroom. One afternoon, Anne cried “Mommy, my teacher hates me. She never calls on me.” And I could only sit on her bed and hold her and rock her in my arms and cry with her. What had I done to her? What had I done FOR her? Was it fair to put this sweet and innocent child through this? Was she being sacrificed on behalf of political change?
At semester’s end, the school held a mandated meeting. They were petitioning to return Anne to the handicapped school setting but the law required that she remain in place until the issue was resolved. The founder of the Spina Bifida Association of Southern California was there as my advocate and it was she who skillfully talked about the teacher’s resistance to the mainstreaming and its effect on Anne. After the meeting, the teacher came to me in tears, saying “They are ALL my children.”
The next day, Anne came home smiling. “My teacher called on me today.”
In the first grade, Anne’s new teacher welcomed her. A few years later, I heard that this teacher had moved into the Mainstream Department. After the first grade, Anne transferred to a magnet school for gifted children and her teacher, herself belonging to an ethnic minority, was welcoming and supportive. She came to Anne’s funeral that summer. Anne died unexpectedly when she was nine.
Though happy by temperament, Anne did not in any way have an easy life. In hindsight, knowing that her early death was probably inevitable, I sometimes think I might have kept her in the limiting but protected handicapped school, where she might have been less stressed by these struggles against prejudice and failures in accommodation. But she had begun to pick up the behaviors and habits of kids in her class who had developmental disabilities and her speech and actions were changing. That’s one of the things such segregation can do. And—this upsets me even now—she was barred from using the handicapped school’s brand new swimming pool that only able-bodied children were allowed to access. To accommodate the children left out, the school set up a sprinkler system that she and other children still could not use because of their physical disabilities. What was the value in being bused to a handicapped school that was not adapting to individual needs, as was their theoretical mission? It, too, did not well accommodate disability.
Medical procedures aside, Anne met most of her challenges with remarkable enthusiasm. She understood, even at nine, that she was part of a movement, a then daring call for equal rights. She loved Lily Tomlin, whom she’d never met, and one of the last outings we spent tougher was going to see one of Lily’s films. I had contacted her because I felt that she would be able to create a character, the first one on Broadway, to speak out for disability inclusion in everyday society. In her characteristic genius, Lily did this and we were thrilled. As were disability advocates throughout the country. Mr. Rogers, too, became a part of our circle with one of his Chrissy Thompson shows. And Anne’s first pediatrician spent her life advocating and writing on behalf of children with medical needs, in which she specialized.
There is a long tradition in our country of this kind of advocacy in the arts, the professions and in politics. Yes, of course, it takes a village. Our human function and our legacy in this world is not simply physical but social in its nature.
But even with supports, Anne’s small life was hard. Mainstreaming was always a work-in-progress. All of us made small mistakes, sometimes being too loosely prepared, sometimes too strident, pushing just a little too hard, at other times not hard enough, expecting a little more change than was delivered at that time. There is work that remains even now.
These days, because of family circumstances and my own past work experience, I see mental illness as very much a disability, one that is complicated by a lack of knowledge and by misunderstanding. This is especially true in both popular and legal misapprehensions about psychosis, because of some collective inability in our culture to tease out any meaningful understanding of what choice and personal volition really mean, where it comes from, how it can be managed. Scientific research can change that. But we live in a time when science is viewed with suspicion, when its complexities seem hard to understand. Mental illness is a biological brain disorder although it has social implications. But this is not yet widely recognized.
Once more, politics and art and professional judgment will have to intervene.
Once more, Hillary Clinton has begun to address this issue without fanfare and with great thoughtfulness in her proposals about mental health care.
Here we go again.