“It’s a monumental, pivotal law. Without it I would not have the rights that I have. But it can be improved upon. The work is not over.” — Ola Ojewumi. Photo courtesy of Ola Ojewumi.
At 30 years old, is the Americans with Disabilities Act a grand achievement to be celebrated, or does the lack of uniform enforcement water it down too much? Has it met the lofty expectations of President George H.W. Bush, who upon signing it proclaimed, “Let the shameful walls of exclusion come tumbling down,” or are those barriers still holding people back?
To find answers, we consulted Lex Frieden, from Houston, Texas, who’s widely known as a chief architect of the ADA; Ola Ojewumi, an exciting young leader who hails from the Washington, D.C., area; Shannon Moore-Cardoso, a mapmaker who’s lived all over the United States; and Terri O’Hare, creator of the Facebook page Wheelchair Ramps And Access From Hell and a constant challenger of the ADA’s boundaries in Albuquerque, New Mexico, and beyond.
Has The ADA Met Expectations?
“I would say yes,” says Lex Frieden, 71, a quad who is a professor at The University of Texas Health Science Center at Houston and director of the Independent Living Research Utilization Program. He headed up the National Council on Disability back when the Americans with Disabilities Act was just an idea, and it’s no exaggeration to say there might not be an ADA if not for him. “There’s been a sea change in the way people in the public view those of us with disabilities, at least those of us who are active and participating in the community.”
Today, many Americans take curb cuts, disabled parking, and reserved seats in stadiums and theaters for granted. Younger people might even think these architectural features always existed. “Like on a bus, the seats that fold up, many of them believe, ‘that’s nice, look what they’ve done.’ But it wasn’t nice,” says Frieden. “It was done because the law required them to. There has been a significant impact by the ADA.”
Albuquerque advocate Terri O’Hare isn’t as positive as Frieden. “If cities, governments and private business would actually follow the ADA, the U.S. would be far more inclusive and accessible,” says the creator of the sarcastic Facebook page Wheelchair Ramps And Access From Hell. She’s responsible for local venues, such as trails, being made accessible and, although she’s a wheelchair user with muscular dystrophy, her most recent fight has been about making her city’s public “One Albuquerque” artwork accessible for people with visual impairments.
The 17,000-pound sculpture of the phrase “One Albuquerque” has the A, L and B letters sticking out at exactly the right height to bop some innocent blind pedestrian in the head. The city tried to resolve this by putting ropes around the typographical monolith, but a white cane could easily slip underneath. Anyway, the plaza’s not stiff enough to hold that much weight, and officials are trying to figure out where it should go instead.
O’Hare, 62, resents having to keep fighting discrimination. “If so many of us didn’t have to haggle with city officials and employers about rights that were passed as federal law 30 years ago, we’d be able to focus on the more exciting aspects of disability and access culture,” she says. “But we’re still having to write emails and call city planning directors and CEOs about obvious failures to meet compliance.”
Growing Up With the ADA
Shannon Moore-Cardoso, who has rheumatoid arthritis, was 13 when the ADA passed and says that for her whole life most places in America have been at least somewhat accessible. Her wife is from Portugal, and together they have lived in Europe, on the West Coast and now in Gulfport, Florida. When she thinks about whether the ADA has met expectations, she mentally flips through the maps of places she’s lived. Access in San Francisco constantly puts East Coast efforts to shame, and Florida is OK. Despite being friendly and charming, Portugal — which is not bound by American laws — was challenging access-wise.
“Over there, sometimes the only place you can go to the bathroom is a gas station or something crazy like that, so you really have to plan ahead,” says Moore-Cardoso. Even American joints like McDonald’s don’t follow the ADA in Portugal. “The only place that does is Hard Rock Cafe, because it’s a photocopy of the ones here in America.”
It was Portugal’s spotty access that led Moore-Cardoso and her wife, Joana, to create their company’s product, Effortless City sidewalk pocket maps. Their inspiration came from a meeting with a paralyzed cousin of Joana’s. “He was super-depressed, so I went to meet him and give him a wheelchair person pep talk because nothing there was accepting and open for him,” says Moore-Cardoso. “But even in Portugal, if you really try to figure it out and determine a route, you can go to this place and you can go to that place. So we thought, we need to make maps of accessible routes, so people know they can have a life.” Their cousin ended up coming out to California, and his life did turn around.
Ola Ojewumi was born the year the ADA was passed and says, “It’s a monumental, pivotal law. Without it I would not have the rights that I have. I’ve used it to advocate for myself as an employee and student in public school and college. But it can be improved upon, particularly for children with disabilities. The work is not over — it’s not done.”
When she was 11, Ojewumi survived a heart and kidney transplant. “Three years later, I’m in high school and they refused to give me an elevator key, and they wouldn’t put my classes on the same floor. I passed out twice trying to get to classes, and I got lower grades because I was late to class. I knew if I was a 15-year-old white girl, none of that would have happened — I would have been treated as a hero for surviving two transplants. But to my school and the white administrators, I was a nuisance,” she says.
The Individuals with Disabilities in Education Act covers the right of students with disabilities to receive a free and appropriate public education, and the ADA requires school buildings to be accessible. If they’re not, then reasonable accommodations — like those Ojewumi requested — must be permitted.
Ojewumi’s government teacher encouraged her to speak to the school board, which she did, telling them, “I couldn’t get an elevator key. I survived all of this and can’t get to class. I have to wait for a teacher, and I wait and wait and miss the bell and get detention.” Then, when she learned what the ADA was and that she could use it to get that key, she says, “It was game over. I started fighting for myself and other students with disabilities, and the school board appointed me to the Disability Inclusion Advisory Board for over 150,000 students in my county.”
Shown in both photos are Lex Frieden and President George H. W. Bush, who remained friends through the years. Photo courtesy of Lex Frieden.
In What Ways Is The ADA Lagging?
There have been great strides in the area of transportation, as buses, trains, planes, and — in some places, anyway — subways have become accessible. But then along came ride-sharing companies like Uber with their goofy argument that because they use a phone app to connect drivers with riders, they’re somehow not transportation providers.
This argument wreaks havoc in Ojewumi’s budding public policy career, and she is one of several witnesses testifying against Uber in an accessibility lawsuit. “It takes me an hour to get a WAV, and a nondisabled person gets picked up in two minutes,” she says. “I’ve missed speaking engagements, including opportunities to speak alongside of Rep. Nancy Pelosi and Sen. Chuck Schumer because I couldn’t get a ride.”
Disabled people are a huge customer base, and any transportation company that understands this stands to do quite well for itself. Instead, “They’d rather spend money fighting us than making money. We have a base and a major law that we can use to advocate for equal transportation, but we still have to fight these corporations for accessibility,” says Ojewumi. “I shouldn’t have to convince you of my humanity. I am a disabled person, and together we are a major market, so why are you fighting us?”
Frieden concurs with Ojewumi, referring to ridesharing’s scofflaw attitude as “the whole Uber fiasco.” But, he says, “I am not convinced the ADA has failed here. I think the courts have failed to uphold the ADA in regards to complaints about Uber and other groups like that.”
He’s also disappointed in how stubbornly the area of employment has resisted compliance with the law. “In some respects, I believe the awareness of employment discrimination has been significant, as employers are more aware of discrimination than they were before the ADA,” he says. “My concern is that they, whether by intent or not, practice a kind of subtle type of bias that you can only see by looking at disparities.”
Terri O’Hare enjoys the trail that her advocacy helped to make accessible.
Let’s say three highly-qualified people have all made it to the top of an HR pile and all are called in for interviews, but one has an obvious disability. “I think there’s a high likelihood that one without disabilities will be determined to be most qualified, regardless of the facts, and it’s very difficult to question that kind of judgment,” he says. Employers certainly have a right to choose who they believe will move them closer to their goals, “but when you look at the whole big picture, you see it results in discrimination. I’m at a loss to know how to legislate that.
O’Hare focuses on public accommodation violations. “Today I drove by a new dining and entertainment complex with shipping containers as its design core. It opened a week ago,” she says. The parking lot is done all wrong because the architect and site planner ignored the ADA, which the city didn’t catch when it gave the business a certificate of occupancy. Once a complaint is filed, the pathway to the restaurant will have to be leveled out, and more accessible parking spots are going to have to be designated.
“There is no excuse for this 30 years after ADA,” she says. “If I took my city’s violations of ADA, which are in the thousands, and multiplied them by other cities, we’re looking at so much ignored physical access compliance that it’s maddening.”
And then there are the programmatic issues, as all the cultural events and venues of a thriving city — such as plays and zoos and parks and libraries and museums — must be accessible. “They groan when reminded, and even when they say they’ll involve the disability community ‘the next time’ in the planning, they tend not to,” says O’Hare. “I think until folks stop seeing disability as an ‘othering’ thing, but as something that can and will happen to them, their kids, and their parents, there’s little incentive to get engaged and excited about what it can mean.”
Moore-Cardoso grew up in New Jersey, where her mother fought for her to get an education. “My school didn’t want to provide me with a wheelchair bus,” she recalls. “They’d say, ‘We don’t have to do that,’ and she’d say, ‘Yes you do,’ and she’d go to our congressman to enforce it. But even here in Florida, where I live, there are three pools nearby, and not one has a lift. That’s a tough thing about the ADA. In some places it’s awesome, and in other places they don’t really care.” She says her apartment complex even made her pay for a little baby ramp to put over her apartment door’s threshold. “State by state, when it comes to accommodations, you’re really gambling.”
What Comes Next For The ADA?
Joana and Shannon Moore-Cardoso
Moore-Cardoso hopes that ADA compliance becomes uniform across the United States, and even overseas, as more nations adopt American-style access. “I’ve lived in a lot of different places: New York, New Jersey, Ohio, California, Florida … California was amazing. But everything is about awareness,” she says. “We need to compare, state to state, and have a place to talk about the differences. Why can some have an amazing light rail system, and in New York City you can’t even use the subway? It doesn’t make any sense.”
Frieden wants a focus on inequities in the health care system. “The pandemic experience has unmasked a lot of gaps in the ADA to the extent that there has been evidence of discrimination in regards to health care,” he says. “I believe it’s now more clear than ever that the ADA should include a title on nondiscrimination in health care.”
He suggests that title should speak more clearly about alternatives to institutionalization. “When you look at the numbers of people in nursing homes who have died, the major difference between the two groups is disability,” he says. “You might say it was both disability and age, but we have data that points to disability.”
Ojewumi says an end to subminimum wages would be great, as would an end to Medicaid work requirements. But her heart is with our future: students with disabilities. “I’d like to see accommodations made so part-time students aren’t penalized,” she says. “That was a problem for me because I was hospitalized three times my final semester of college, and it affected everything. Being forced to be full time to keep my scholarship, it stressed me out. Meet students where they are, so they don’t fall through the cracks.”
Also, she wants to see an end to racism and its associated ableism in public policies, especially health care. “We see with COVID-19, how many more black people have died because of medical racism. I want race issues on the forefront,” she says. “If racism wasn’t so prevalent, then the government wouldn’t think disabled people could live on $780 a month on SSDI. All of this is because of anti-black ‘welfare queen’ public policy.”
O’Hare wants to see disability arts strengthened, as they are a potent way to influence our broader culture. “I am heartened by the many disabled artists, writers, performers and movement voices I see who are pushing ADA and access beyond ramps and moving disability inclusion into cultural areas,” she says. She cites high-quality memoirs being published, such as Corbett O’Toole’s Fading Scars and Alice Wong’s anthology, Disability Visibility, and films like Crip Camp, which broke through into the mainstream. “This is where the riches lie. The creative output and examination occurring in our movement is so powerful. This is how we will connect to a larger public and also create space for those coming up or going deeper into their current experience of disability.”