Having a sister with complex disabilities was not something our family talked about.
When my sister Gayle became ill in 1958 at four months of age, she remained at home with her older sister. Like so many families at this time, my father was the breadwinner, often juggling two jobs, while my mother raised the children and kept house. A few years later my brother arrived, followed by me in 1962. The following year, Eunice Kennedy Shriver would famously write about her sister Rosemary in the Saturday Evening Post, helping to renew interest in the need for services and supports for people with intellectual and developmental disabilities (IDD), while reducing the stigma of having a disabled child in the family. But my own family, like most, did not speak up and fight for social change. Parent advocacy organizations like The Arc (then called the Association for Retarded Children) mobilized families across the country, meeting in community centers and church basements. Perhaps due to lack of time and resources, or because of shame, my parents were not among them.
With brown hair, deep brown eyes, and an infectious smile, Gayle was a beautiful child. She was always there, part of our family, and yet, somehow, she wasn’t. I was quite young, but even my brother and older sister have very few memories of interacting with Gayle. She was fed, individually, after we ate as a family. We attended church on Sundays, but not with Gayle. A talented portrait artist, my mother would paint pictures of her children and display them proudly on our living room wall, but only pictures of three of her children.
As her body gradually atrophied, Gayle’s support needs became greater. I’m sure doctors encouraged my parents to institutionalize her, as was common practice, but she remained home for nine years. Although strong, smart, and determined, my mother had disabilities as well, and the time came when it was too physically exhausting for her to manage four children. In 1967, my parents brought Gayle to the Lapeer State Home and Training Center, then Michigan’s largest institution, and at this time my relationship with Gayle as a sibling really began as I have no memories of her at home.
Every week, and then every month, we would pile into our station wagon and visit Gayle on weekend afternoons. At the height of institutionalization in our country (nearly 200,000 people with IDD resided in overcrowded public institutions in 1967) and the beginning of newspaper and television exposés illustrating the abuse and neglect happening in these segregated facilities, we saw only beautifully landscaped grounds and welcoming staff who would bring Gayle out in a modified, reclining wheelchair to visit with us. (We were not allowed beyond the lobby.) Gayle was overjoyed to see us and we delighted in pulling her around the floor on blankets and jackets, making her laugh. Gayle’s quadriplegia prevented her from moving her limbs and she did not speak; the only educational services available at the time were in the institutions, but as someone deemed not “educable” or “trainable,” in the institutional vernacular, such services excluded her even there. Other children living at Lapeer would often come out to meet us, seeking attention and human connection. One boy with hydrocephalus would routinely beat me at checkers. Every time we left, Gayle cried. This was our connection with our sister: loving, distant, and largely unexplained.
Although a causal connection had not been made, Gayle became ill and was predominantly paralyzed after receiving a polio vaccination. (My father contracted polio as a child, lived for more than a year in a body cast, and lost most of the use of his right arm.) My parents knew only that she suffered from a persistent fever and never received clear answers from their doctor. For years, my mother wondered what she had done wrong to bring about Gayle’s condition, thinking that had she brought Gayle to the hospital sooner for her high fever all might have been well. Or that perhaps the doctors had done something to damage Gayle. Her own treatment by doctors, which she often described as rude at best, must have colored her perceptions. After delivering me, she never visited one again.
This fog of mystery around Gayle’s disability, and my mother’s as well, felt impenetrable. Even as adults, we would carefully broach the topic, learning only that my mother had a very difficult childhood and, beyond that, we “just wouldn’t understand.” And so, we really didn’t understand Gayle’s disability, or learn how to talk about it. When asked by friends or teachers how many brothers and sisters I had, I struggled with how to talk about my sister who did not live with us.
The visits to Lapeer grew less frequent as we grew up and went off to college, though my parents visited more often after my father retired. In the late 1980s, Gayle left the institution and was moved into a six-person group home. Not until working as a direct support professional during college did I begin to understand the context of Gayle’s life, the loneliness and dehumanization she must have experienced. Many of the individuals I supported were wards of the state and had no visitors. Years later, I would learn about disability rights, the self-advocacy movement – social change by and for people with intellectual and developmental disabilities – and the powerful, worldwide community of disability advocacy. Where our family was evasive about disability, I learned of so many others who took great pride in speaking up and telling their stories. Local and national networks were available to support parents with disabilities and to promote sibling relationships.
Two months before the passage of the Americans with Disabilities Act in 1991, Gayle died following hospitalization for pneumonia. Although her disability occurring as the result of a reaction to a vaccine was extremely unlikely, this explanation, provided by a caregiver at Gayle’s funeral, provided immense relief to my mother.
Not until working as a direct support professional during college did I begin to understand the context of Gayle’s life.
I’ve worked in the field of disability advocacy for almost 30 years. Like many of my colleagues, this was not the career I envisioned in my 20s, but being part of a social change movement has been remarkably rewarding on many levels. I often thought of my relationship with Gayle as being coincidental to my work, but this distant relationship has been a moral compass, focusing attention on developing opportunities for people with disabilities to have valued roles in their communities and providing a level of personal satisfaction that is impossible to separate from the professional. Though we missed out on developing a close relationship as siblings, I’m indebted to Gayle for her influence.