by Chris Rogers
An unassuming man with a gentle demeanor, Winonan Stewart Shaw never expected to be twisting the arms of state senators, navigating local political waters, or calling for a major social change from every podium and editorial page he could get his hands on. He never imagined he would be caught up in a decades-long struggle for human dignity. Then his son was born.
The doctors suspected it right away. Six weeks after David Shaw was born in 1968, he was diagnosed with Down syndrome.
The disorder was not well understood at the time, and support for families with developmentally disabled children was meager. In the 1960s and into the 1970s, most people with developmental disabilities were either cared for full time by their families or committed to bleak state hospitals. David was never sent to a state hospital, but thousands of people like him were.
"The conditions in the institutions were horrible," Shaw said. "Our organization worked hard to get those people out of those institutions, those subhuman conditions," he continued, referring to his decades of work with the advocacy group for the developmentally disabled, The Arc Minnesota. The organization led the charge in a long effort to "deinstitutionalize" care for developmentally disabled people.
Shaw's longtime colleague, Dennis Theede, of Home and Community Options, described the state institutions as sites of unintentional "atrocities." Sent away from their families to live in isolated hospitals, what some once called asylums, 40-some high-need, developmentally disabled people would be assigned to just two hospital staff members, Theede said. Sanitation and basic comforts were sometimes lacking, according to Shaw. He added, "They didn't have any program for [the patients]. They were basically making sure that they didn't kill themselves or anyone else. That's all it was."
According to numerous reports, over 2,000 patients of the former state hospital in Rochester were buried in unmarked graves. "That was an indicator of how it was felt that these people were nondescript," said Shaw. For society, the attitude towards those people was "out of sight, out of mind," he continued.
Shaw and the men and women of The Arc Minnesota believed in a better life for people like David, but first they had to change attitudes in their hometowns and in St. Paul. It was not an easy task. For Shaw, himself, the treatment of developmentally disabled people never entered his mind until 1968.
Waiting with Danny
Shaw was ten when he got a job delivering newspapers in the 1940s in Oelwein, Iowa, and met the only person with Down syndrome he would know until David was born. Danny was well-known in Oelwein: "a town character," Shaw said. A man in his 30s or 40s, he lived with his parents, but spent much of his time strolling around downtown, talking with everyone he would meet. The newspaper office was a favorite haunt of Danny's, especially when the carriers were milling about outside, waiting for their bundles of freshly-printed papers to be turned out.
"Everybody knew him and spoke to him by name," Shaw recalled. "But he was kind of made fun of a little bit. I don't think we were abusive, but he definitely had a status and a reputation, and he was probably a little gullible."
At the time, Danny and others with Down syndrome were still called "mongoloid," a reference to the wide-set eyes common among those who suffer from Down syndrome.
When asked if Danny's life was a good one, Shaw expressed mixed feelings. "He was sort of made fun of, but he was accepted. He lived in the community, and he wasn't sent off to the state hospital," Shaw responded.
At the same time, there were few opportunities for Danny. "There weren't any services available for him. I don't know if he ever went to school," Shaw said. Minnesota did not start offering education for developmentally disabled children until the '50s, according to Shaw. Even then it was very limited. It was not until 1970 that education for disabled children was mandated, he said.
For Shaw, Danny was just a town character from his adolescence. "I really had no interest in finding out any more about the disorder," he said.
David's diagnosis was shocking and difficult at first for Shaw and his wife, Kay. The news was overwhelming. "It was almost like losing a child in an accident," he said. "If you can imagine giving birth to a child who does not meet your expectations, whether that child is blind, deaf, or has a developmental disabilities or a physical deformity, it is really difficult, especially when she never had any problem with the pregnancy." Mothers of Down syndrome children often have troubled pregnancies, but the Shaws had no inkling that their son might have a problem.
As the reality set in, "I knew we needed help; I knew we needed support," Shaw said. He began reading every book on Down syndrome he could find at the library. Can occupational therapy help? What can you do to avoid tantrums? How do you to help them be as functional as possible? What sort of help is out there?
He and Kay started going to meetings of the local chapter of The Arc Minnesota, an advocacy group for the developmentally disabled and their families. The meetings were part support group, part resource center, and included other parents and experts on developmental disabilities.
David was lucky enough to go to a kindergarten for the developmentally disabled and to live with his family. As he grew up, and continued in school, "he developed a great interest in the career of Judy Garland," Shaw said. David was an expert on Garland, and would watch "The Wizard of Oz" over and over again. When David's high school drama department performed the classic, he earned a spot as a munchkin, Shaw remembered, laughing.
Being a munchkin meant singing in the chorus, another one of David's great loves. "He couldn't carry a tune, but he loved to sing," Shaw recalled, chuckling. "People in our church still remember how enthusiastic his singing was."
As an adult, David lived in community-based residential homes near his family, with other disabled roommates, and staff members who would help them with daily tasks. The Shaws had the ability to continue to care for David at home as an adult, but "it was better for him, as an adult, to live as normal an adult life as he could, out from under our roof," Shaw said. David died of heart problems in 1996, at age 28.
Stewart the advocate
As David grew up, Shaw became more and more involved in The Arc Minnesota and the Winona residential and home care organization, Home and Community Options (HCO). He started just by seeking the information and services he and Kay needed to raise David, but then Shaw started volunteering and setting bigger goals than caring for David: goals that would change life for all developmentally disabled people in Minnesota. Over the years he has pressured lawmakers, given speeches, written essays, and served as president of local Arc chapters and as HCO president, board member, committee member, and fundraiser.
"Because of the birth and development of my son, I understood that developmentally disabled people really don't deserve a lot of what they get," Shaw said. "They didn't ask to be developmentally disabled; they didn't do anything to be developmentally disabled. They have the same hopes and dreams that all of us have: to live a comfortable life, to live an enjoyable life, to have fun, to live in the community, to have friends, and be safe."
The vision The Arc had was to integrate developmentally disabled people into local communities. Rather than sending them off to state hospitals, the group wanted families to have the option and the financial support to keep their developmentally disabled children in their hometowns, in adult foster care facilities that were as much like normal houses as possible, or in their own homes, with care professionals to help out. Arc members wanted better educational opportunities for developmentally disabled children across the state.
So Arc members, who were mostly parents like Shaw, began meeting with state legislators, as well as lobbying school districts and other local government agencies to improve housing and education options and to win state funding for such programs.
"I had a strong sense of justice, I guess. A sympathy for the underdog," Shaw explained when asked why he became an activist. Theede agreed, Shaw is "a gentle soul who is always kind and respectful" and uniquely even-keeled, "but I see a change in his manner when he needs to advocate, when he feels there is wrongdoing."
In one of The Arc's most successful bids to twist the arms of state legislators, Shaw and his colleagues arranged for the wives of congressmen to tour state hospitals; few women held office at the time. The wives were horrified at what they saw and urged their husbands to close the institutions, Shaw explained.
Locally, neighbors would sometimes balk when HCO opened a new foster house next door. "They didn't think very highly of the idea of having a retarded person next door," so they would pressure the mayor and city council members to prohibit HCO facilities, Shaw said. Now HCO homes are accepted, Shaw added. The organization works hard to make its facilities blend in as much as possible. "If the neighbors treat their lawn like a golf course, we treat our lawn like a golf course," he explained.
Over the course of his life, Shaw witnessed and helped bring about a transformational shift in how developmentally disabled people are viewed and treated: from being shut away in institutions to being connected to local communities. He praised the public for its support and acceptance.
Not only are state hospitals closed, but families "can live more normal lives," Shaw said. "We're not tied down to taking care of our son or daughter or brother and sister. It gives us a strong feeling that the community is helping and supporting and understands what has happened to our family and how it affects us."
The fight continues, however. Shaw explained that since the turn of the millennium, state funding for those with developmental disabilities has been declining. Developmentally disabled people and their families "are at the mercy of the funding that is available."
David forever changed Shaw's view of what it means to be human and to live in community. "We have a responsibility toward other people, in my view," he said. "This experience of having a son with special needs persuaded me that morality requires us to be concerned with everybody."
Stewart Shaw was honored with a Heroes of The Arc Minnesota award last month for the decades he has spent advocating for people with developmental disabilities.