By Ling Woo Liu
If the late Ed Roberts was the father of the modern disability rights movement, then 96-year-old Zona Roberts is its grandmother. Decades before the Americans with Disabilities Act, the introduction of special education, and a California law recognizing Ed Roberts Day annually on Jan. 23, Zona battled for public education, healthcare and independence for her son, who contracted polio at the age of 14.
Now a new administration is threatening hard-fought gains by promising to repeal the Affordable Care Act — a move that would disproportionately threaten those with disabilities due to their pre-existing conditions — and restrict Medicaid, which covers an array of critical services for people with disabilities.
“I’m absolutely stunned that Trump would become our president,” said Roberts recently, “but I think people are well prepared to fight for their rights now. I absolutely think we will prevail.”
In 1962, Ed Roberts, who had post-polio quadriplegia, and whose breathing depended on an iron lung, became the first student with a serious disability to attend an American university. A decade later, he co-founded The Center for Independent Living (CIL), which counts accessible curbs and ramps among its many victories.
Since then, The CIL has inspired 400 similar centers around the world. Between 1976 and 1983, Ed served as the director of California’s Department of Rehabilitation, which helps enable people with disabilities to live independently. In 2010, 15 years after Ed’s passing, California proclaimed Jan. 23 (his birthday) Ed Roberts Day. The day has also been recognized in Minnesota and Wisconsin.
While Ed’s story is widely known among disability-rights advocates, lesser known is the story of the woman who raised him and fiercely advocated for his rights, as well as his independence. In 1953, when 14-year-old Ed, the eldest of her four children, was suddenly diagnosed with polio and placed in an 800-pound iron lung, Zona was as overwhelmed and confused as any other parent of a child with a complex illness.
“We didn’t know anyone with a disability. Everyone felt sorry for us, and they were afraid they might catch polio,” she said.
Ed remained in the hospital for the next two years. During that time, many “polios” as they were then called, remained hospitalized or institutionalized, often without the support of their families. While Ed’s quality of life improved after he returned to the family’s home in Burlingame, CA, his round-the-clock care placed an enormous burden on Zona, as well as the rest of the family. Managing Ed’s very physical care (which involved four people lifting him for baths), in addition to raising three other children and maintaining her marriage, required seeking therapy, despite societal stigma, and finding respite care.
“In order to find my way through,” she said, “I had to be amenable to getting help.”
After Ed’s two-year absence from school, Zona fought for him to continue high school by using a special phone device that allowed him to attend class remotely. At the end of his senior year, she says, the school told Ed that he didn’t qualify for graduation because he hadn’t taken PE or driver’s education classes. When Zona escalated the matter, the assistant superintendent paid the family a visit.
“He looked at Ed in his iron lung and said, ‘Ed, you wouldn’t want a cheap diploma, would you?’” said Zona, still bristling with anger. “It’s a wonder how that man got out of our house in one piece.”
After Zona brought the issue before the school board, Ed finally received his diploma.
Following three years at a local community college, Ed was accepted into UC Berkeley in 1962. But when his iron lung wouldn’t fit into a dorm room, he was moved to the campus’ Cowell Hospital, where he remained for the rest of college. During that time, he and a growing cohort of students with disabilities, inspired by the countrywide civil-rights movement, launched the nation’s first program for students with disabilities.
Zona stayed with Ed for his first week in Berkeley, but once she found him a personal assistant, she visited him only occasionally. “Was I worried? No, I was relieved.” she said. “He was out of the house and I got my life back!”
Zona herself earned a teaching certificate from UC Berkeley in 1969, at the age of 49. She later worked at the Physically Disabled Students Program and at CIL (both organizations co-founded by her son) before opening her own counseling practice to assist people caring for family members with disabilities.
Today, Zona, who still lives in Berkeley, continues to embody that spirit of independence. The razor-sharp, yoga-practicing nonagenarian zips around her two-story 1911 Craftsman in a way that belies her knee pain. In her six decades of activism, she has seen students with disabilities mainstreamed in the education system, as well as the passage of the American with Disabilities Act, more accessible polling stations for all voters with disabilities, and insurance coverage for some 90% of children and adults with disabilities. With some of these gains now under threat, she says that Ed would “be ready for the battle to begin.”
Ling Woo Liu is the director of communications and community engagement at the Lucile Packard Foundation for Children’s Health. The foundation advocates for a better system of care for children with chronic health problems and their families.