How the Americans with Disabilities Act Changed My Life
Twenty-five-year-old Heather Lucas was born with Cri du Chat syndrome the same week the ADA became law.
Twenty-five years ago this Sunday, the landmark disability rights legislation known the Americans with Disabilities Act (ADA) was signed into law.
Following years of protests on lobbying from disability rights organizations—most notably the “crawl-in” during which dozens of people with disabilities climbed the steps of the Capitol as a demonstration of the unnecessary obstacles they faced—the ADA was passed with bipartisan support in Congress and signed into law by George H.W. Bush.
Its purpose was to increase autonomy and opportunity for people with disabilities, as well as participation in the greater community. It enumerated the rights disabled people had to employment opportunities, government services, accessible buildings, and accessible telecommunications.
Like the ADA, Heather Lucas of Windsor, Colorado, was born 25 years ago this week. The obstetrician attending to her birth referred to her as a “Mongoloid infant” and used the pronoun “it” in medical records. Like one of my own sons, Heather was born with a rare genetic syndrome called Cri du Chat syndrome. Among other disabilities, she has severe intellectual disability, doesn’t walk or talk, and receives nutrition through a feeding tube.
The ADA has not yet achieved its goals of equality of opportunity and community inclusion. However, Heather’s life, spanning the same interval as the ADA, exemplifies the power of the ADA to improve the experiences and opportunities of people with disabilities.
When Heather was a young child, her biological parents could no longer care for her. Had the ADA not been passed, Heather would have most likely been consigned to a bleak fate in an institution. Prognoses for the health and development of institutionalized people are poor—and forget about happiness, fulfillment, autonomy, or community. Because of the ADA’s provisions community participation and accessible government services, however, Heather’s life was dramatically different than it would otherwise have been. Instead, she was placed with a foster family.
Her biological aunt, Carrie Ann Lucas, requested to adopt Heather when she was 9. Carrie has multiple disabilities and uses a wheelchair. A social worker was reluctant to permit Carrie to adopt Heather, but the ADA forced her hand. Heather had a home with Carrie.
Post-ADA, many barriers to Heather’s education, participation in the community, and recreational opportunities were knocked away. She was able to attend an integrated school in a historic building that had been made accessible. She played in playgrounds and could visit parks, zoos, and public gardens.
Heather adores ballet. An opera house near her Colorado home remained inaccessible. Heather was part of a lawsuit that forced the opera house to provide the ability for Heather and other wheelchair users to attend ballet performances. On family camping trips, she loves sitting and watching the fire dance, which she is able to do thanks to accessible campgrounds. “When I bring her to a restaurant, she isn’t told she’s a fire hazard,” Carrie told The Daily Beast.
Andrew Pulrang maintains Disability Thinking, a disability rights blog. He credits the ADA with providing a new framework to think about disability rights. After the ADA passed, he was part of a network of disabled people and organizations that received training in the provisions of the law so that they could in turn educate the community.
“Before the ADA, we had little guidance about what we could reasonably expect. So, some disabled people asked for basically nothing, and saw all forms of accommodation accessibility as a kindness. Meanwhile, others demanded everything with equal force, with little understanding of what was possible or probable,” Pulrang says. “I was mostly in the former category. I was a fairly confident person, but I tended to assume that my disabilities were ironclad limitations I just had to operate within. The ADA helped me translate my wish to do more into practical goals and the language to articulate them.”
Robyn Powell, 32, is a lawyer for the National Council on Disability, an independent federal agency that advises the government on disability rights policy (it was the NCD that wrote the first draft of the ADA). Powell has arthrogryposis and uses a wheelchair. She points out that she could not have her current job if it weren’t for the ADA. She would not have been able to go to college, law school, or her Ph.D. program. Powell says, “The ADA gave us freedom of opportunity to make our lives what we want.”
She notes, however, that work on the ADA and other disability-rights legislation is far from complete. While disabled parents are protected by the ADA, the law is often unenforced. Children are still removed from their parents’ homes, and people with disabilities are sometimes even denied the right to marry.
Pulrang agrees that the ADA doesn’t have enough teeth. It’s too easy, he says, for businesses to claim that accessibility is too burdensome or to avoid hiring people with disabilities.
“On the bright side—and it’s a real bright side—the ADA created easily understood and conceptually sound structures for how accessibility and non-discrimination can work, in real-life practice,” he says. “That’s a huge thing, because before the ADA, most people—even most disabled people—had no real idea what actual equal opportunity might look like, even in theory.”
Now that Heather is an adult, she lives with one of her sisters in a carriage house behind her Aunt Carrie’s house. Due to the Supreme Court’s Olmstead decision, which ruled that the ADA provided that people with intellectual and developmental disabilities should live in communities rather than institutions (if they so desire), Heather can live independently.
“Most 25-year-olds do not hang around their parents. She goes camping without me,” Carrie says. “All because she can have an attendant, have the consumer direction to say, ‘This is how I’m going to use the community, someone can push me there.’”
Her attendant helps Heather get to baseball games or the movie theater. Or she can stay in, sleep late, and watch Grease. Heather is the one responsible for directing her own activities, to a far greater degree than she ever could in an institution. As Carrie says, “Thanks to the ADA, Heather gets to live in her own home—but she’s not stuck in her own home.”