Becoming Citizens. Susan Schwartzenberg
should have the same opportunities non-disabled children enjoyed. The normalization movement popularized by Wolf Wolfensberger in the mid 1960s, as well as the Kennedy family’s public admission that they were a family with a disability, gave parents new hope and an ideology. To parents, normalization meant, not that their children would be changed and made “normal,” but that society would change and learn to accept, include, and appreciate their kids for who they were.
The Education for All Handicapped Children Act of 1975 not only provides a public education for every child with a disability in his or her community, it has had a profound influence on the decline of the state institutional system. Many parents could have their children at home and attending school in their local communities—as some described it, “Our children have at last somewhere they can be.”
Building a Narrative – January 2002-2004
The project did not originate from a research question, but from spending time with a community. I live in San Francisco, so I traveled to Seattle every two or three months. I stayed in the homes of the members of the SFN and participated in many events and gatherings. We went to advocacy meetings and family circles and met with various professionals, from social workers to administrators in the field of disability. I visited group homes and was given a tour of Fircrest, a state facility in Seattle for people with developmental disabilities, which opened in 1959. We had community potlucks and we organized a history work group. We also conducted preliminary interviews and developed a working prototype of stories for people to discuss and critique.
The families selected were pre-interviewed by the SFN. We chose families with a range of personal experiences. Though some people preferred privacy, harboring old fears that harm or ridicule might come to them should their story be made public, most were very willing to participate. We also asked that they gather photographs, mementos, and any other materials from their personal collections that they thought might help us understand their family life. Stories often do not have convenient beginnings or endings, so the meetings were conversations rather than formal interviews. Often the family, or in many cases it was the mother we spoke with, had something she had been thinking about—conversations began to flow the minute we entered the home. We developed the following question “areas,” or territories of conversation.
How did you learn of your child’s disability and what did you do?
I wanted to learn the scope of the family’s experiences, how they felt and how they made the decision to keep their child at home, even though in most cases they were advised to place the child in a state or private facility. Many parents were told their child’s prospects were dismal. They were told the child would not learn or develop and that this child would also disrupt the possibility for a normal family life—the disability would adversely affect their other children and themselves. Most describe being bewildered. It became evident that knowledge about developmental disabilities was haphazard.
The parents characterized the doctors as having little experience and the profession as a whole as having no “procedures” in place for helping them. Yet many of the recollections also included at least one doctor or nurse who honestly said, “We don’t really know how your child will progress—each child is different.” Parents were given contradictory information and many were also advised to bring the child home and treat him/her like their other children. Their stories convey a sense of confusion and isolation. For almost every mother interviewed, retelling the story of how she was told of her child’s disability was a profound reexperience of it. While some families chose to keep their child on the basis of religious conviction or fear of “institutions,” most describe an almost gut sense that a life in the family home could somehow make a difference.
Collage by Katie Dolan made from news fragments in 1950. 1950 Baby Crop Means Big Business, Seattle Post Intelligencer, July 26, p. 5B; photograph by John M. Miller
Two families in the project initially kept their child at home, but the severity of the child’s disability and specific family circumstances influenced them to search for different options. In both cases they were advised to place their child at Fircrest though there was a period of time on a “wait list.” Once the children were admitted, many family members maintained contact with their child, and the mothers of both children placed at Fircrest joined the parent advocacy group, Friends of Fircrest.
I asked them to describe the particular form of the child’s developmental disability. The conditions include Down Syndrome, Cerebral palsy, autism, epilepsy, and conditions caused by oxygen deprivation at birth, fevers, flu, spinal meningitis, and sometimes the causes were not known. While this book does not center on the reasons for the disability, or how it occured, every story provides some description by the parent, although knowledge was scant and often unavailable. While some parents embarked on their own research, others went from doctor to doctor, or searched for schools or special medical care. For most, and eventually all, the condition itself became irrelevant. Parents chose to concentrate their efforts on what they could do for the child socially. They searched for ways they could provide a “meaningful” life. They learned to see that child as a person and not as a disability. For many parents this was a pivotal moment, both in their home life and for getting involved in political actions.
What was your family life like?
The families describe how there were almost no services or programs to help them learn how to care for their “mentally retarded child.” Some parents found an encouraging doctor, and some mention being visited in the home by social service workers. But most often they described how other family members, neighbors, and acquaintances helped them cope and find answers to their questions. Two mothers describe how a relative got them to recognize the disability and the task at hand. Another mother described an appointment with a neurologist, who said to her, “If you don’t toilet train this child…,” prompting her to realize what no other professional had even suggested: that it was possible for her daughter to learn. Most describe learning from within their own home-life context—with many of the family members participating in caring for the child with a disability as well as taking on extra responsibilities in the household.
While most people presented the positive experiences in the home there were also descriptions of feelings of shame and distancing from the child with a disability. Some describe strains on the marriage, fears of society, and psychological stress. One family member described how the family never expressed love for one another—all their love was focused on his brother. While some families turned inward, others, in reaction to so little information and so few services, started their own networks, organizing mothers groups to help new families prepare for the years ahead. Eventually many parents joined the Washington Association for Retarded Citizens (ARC) and/or other local and national disability organizations—their participation helped to form the national networks.
Describe your child’s personality.
Every person with a disability in this project was born before 1965. Most are in their forties and early fifties. Of the now thirteen adults I was able to include the voices of all who were comfortable with spoken language. In almost every family interview they were present. I asked every family what special things they did as a family because of the interests of the child with a disability. How did they communicate with the child? Did they develop special ways of communicating? I attempted to create an existential picture of the person from within the family context. In many family descriptions the child with a disability was at the very center of family life—literally wedged between the other children in the snapshots of family events. Many times the family members described how important the experience of their sibling was to their way of thinking about life. In fact, some siblings grew up to work in the fields of disability and social work. In three of the stories the person with a disability had died in adulthood.
What educational opportunities were available to your child?
All the parents described the lack of educational opportunities and the ways their children were discriminated against. Many parents described almost a quest in their search for meaningful programs. I wondered what the parents learned about the ways their child learned. Often they