Growing up, I always used crutches to get around, and only would use a wheelchair for school field trips or vacations that involved long-distance walking; ableism and issues of inaccessibility are part of the reason why.
In the moments when I did use a wheelchair, I noticed that I was restricted in terms of where I could go. I remember facing barriers in accessing some shops and restaurants, especially in older buildings.
These concerns took on added significance after an upsetting visit to a Washington, D.C., bar in early July where I was told to leave my wheelchair outside.
My friends had already carried my wheelchair down to the first-floor entrance. I could otherwise physically enter the establishment on my crutches, but we were told that we could only come in through the accessible street entrance on the second floor.
The business eventually let us in through the front entrance, but when my friends carried my wheelchair upstairs to the dance floor on the third floor, we were once again told that the chair wasn't allowed in that area, and that we'd have to keep it on the second floor.
This entire experience left me reflecting on the Americans With Disabilities Act of 1990 — a civil rights law that prohibits discrimination based on disability in all aspects of public life.
The incident, which received a lot of attention and media coverage, left me frustrated and questioning how something like this could have happened with the ADA in place.
My experience at the bar is not unique in the disabled community, which shows that while the ADA is an important foundation for our rights, and shouldn't be taken for granted, it is just the baseline. We need more protections and policies to prevent such issues and to further disability rights.
It has been 32 years this week since the law was passed, and activists and experts believe more protections and policies are needed to prevent such issues and to move the disability rights movement forward.
Joining the disability rights movement was a pure necessity for this activist
When she was in college at Long Island University, Judy Heumann remembered having conversations with other disabled students about significant movements that were happening at the time, including the women's rights and civil rights movements. But they didn't see much of a disability movement happening.
Heumann began learning from other activists as a participant in anti-war protests, as well as from organizing protests and activism with other disabled students at her college.
"We were no movement, but we were talking about [how] there are a lot of us, and there are all these issues that need to be dealt with. These other groups are not representing at all, they're not really seeking us to be involved, whatever the group was. And we need to be looking at creating something that brings us together, and where we can be addressing these multitude of issues," Heumann told NPR in a Zoom interview.
Heumann would go on to become one of the leaders of the disability rights movement, which led to societal shifts that often are taken for granted today.
David Capozzi, who served as the executive director of the U.S. Access Board and oversaw the development of the ADA's accessibility guidelines, said the law's biggest successes have been in public transportation.
Prior to the passage of the ADA, 65% of the buses in the U.S. were accessible. According to a 2020 survey by the Federal Transit Administration, more than 97% of buses are ADA accessible.
"You could go to any corner in any city across America, wait for a bus, and you know that that bus is going to have either a lift or a low floor and a ramp. And there's not many countries that can say that. So I think that's a big success," said Capozzi to NPR in a Zoom interview.
But there are still frustrating gaps, Capozzi said, noting that Amtrak has only made a quarter of its stations accessible in the decades since the law passed. Similarly, less than a quarter of subway stations in New York City are accessible to those with physical or mobility disabilities.
More education around disability rights is needed
Capozzi noted that there are no "ADA police," so complaints of inaccessibility and ADA violations have to be filed with agencies such as the Equal Employment Opportunity Commission and the Department of Justice.
This accountability mechanism is one of the limitations of the ADA that often gets brought up in the disability community, said Sandy Ho, the director of the disability inclusion fund at Borealis Philanthropy.
"It is still the burden, the expectation, [and] the responsibility of disabled people, people in the disability community to bring up the ADA and accommodations that are not meeting basic requirements," Ho told NPR in a Zoom interview.
Ho noted that there aren't education standards around the ADA in the way other civil rights movements in U.S. history are taught.
Heumann said that most disabled people don't know about the ADA, and that there needs to be more funding put into training to teach both disabled and non-disabled people about these laws, what entities are covered by them, and how to advocate around the laws.
Because of the lack of knowledge about the ADA, misconceptions arise. For example, Capozzi noted that many believe there is a "grandfather clause" in the ADA that states that establishments built before 1990 aren't covered by the law.
"There's just a lesser standard for existing buildings — you have to make your building accessible to the extent that it's readily achievable to do so, which means cheap and easy. But there is no grandfather clause," Capozzi said.
Disability experts advise against amending the ADA but want to see disability rights advancing
Capozzi believes that reviewing the ADA's regulations periodically is good from a public policy stance, but is more guarded about the idea of amending the legislation itself.
"It's always a risk to open up an existing piece of legislation, because you may not like what the end result is," Capozzi said. "You really need to weigh the pros and cons based on what the politics are. Do you have friends and enemies in the House and the Senate? Do you think that you can get an improvement? Or if you open it up, do you risk losing something?"
The threats to disability rights and the ADA are very much present.
In 2018, the House of Representatives voted to gut the Americans with Disabilities Act by passing H.R. 620, the "ADA Education and Reform Act," which would hamper the enforcement of the law. Forty-three senators voiced opposition to the bill and it has not been enacted.
Disability advocates expressed opposition to the bill, pointing out that it would remove incentives for businesses to comply with the law, and place excessive burdens on individuals with disabilities.
Heumann says that now is not the time to amend the ADA, and that efforts should be directed toward other areas for furthering disability rights, such as home- and community-based services.
She also emphasized the importance of making sure that there are appropriate staffing levels at agencies that handle ADA complaints, and that disabled people and their family members understand their rights.
"When one is armed with knowledge I think we can, in some cases, address issues before they escalate. And in other cases, maybe not." she said. "If we are able to have millions of disabled people understand what their rights are, that to me is very important."
The impact of the ADA on American society cannot be understated
Ho, who was in kindergarten when the law was passed, only learned of its impact later on in life once she began identifying politically and socially as disabled.
As a disabled woman and a wheelchair user, the law protected her and gave her access and equal protection to opportunities she otherwise might not have, including access to transportation, public education and employment, she said.
"The ADA is something that has really kind of been the context and the very background of my life, rather than something that I consider at the forefront of my life and the work that I do," Ho said.
While the ADA is the bare minimum, Ho says that it has not extended to every member of the disability community. She emphasizes the importance of prioritizing those who are closest to injustice and who have been historically marginalized when fighting for civil rights.
"Black disabled women, trans and queer folks who are not put in positions of power but who society is most likely to consider to be disposable, they should be leading this conversation on how and in what ways the ADA should be expanded," Ho said.
Heumann says that the disability movement has come a long way in the last 50 or 60 years, especially in terms of appropriate representation of disabled people in the movement.
She's proud of the ongoing work that the ADA generation — a term for people born after the law's passage in 1990 — across the U.S. and globally are doing to organize against the threats to civil rights.
"The threats are alive and well, in so many ways. The ADA and [Section 504 of the Rehabilitation Act of 1973] and all these other laws ... [are so] important to enable us to be able to live a life like we fantasize under this vision of what it means to live in the United States, and what our rights theoretically are," Heumann said. "Celebrating the ADA is really looking at how our movement has grown. I think we've come a long way in the last 50, 60 years, but we still have so much more to do."
My experience at the bar is just one example of how much more needs to be done for the disabled community
Navigating society is still difficult for me as a disabled person. Following my experience at the D.C. bar, its manager of diversity, equity and inclusion reached out to me to discuss what happened and to apologize.
In our meeting, he laid out action items he planned to take to ensure that such an occurrence doesn't happen to disabled patrons in the future, which included revisiting bar policies and making sure they're enforced with retraining for all staff.
While I appreciated the apology and dedication to do better, I remember feeling very indifferent to the bar's response, and having a, "I'll believe it when I see it" mindset to their statement of dedication to accessibility.
The incident at the bar still happened and it's largely because accessibility and inclusivity for disabled people are often treated as an afterthought. In my experience, attempts to do better were only initiated after such incidents occur and disabled people made noise about.
The burden shouldn't fall on us to constantly fight against violations of our civil rights. In an ideal world, the ADA would be enforced more, and owners of bars and restaurants would prioritize access to all. I wish I was able to access every place in society with ease. But that isn't the reality for myself and so many others.
I'm immensely grateful to be a part of the ADA generation, and will never take for granted how hard disability activists fought for the civil rights protections that I benefit from every day. But at the same time, I want more for myself and my community, whether it be through expanding or modernizing existing laws, or bringing forward new policies to advance our rights and access.
The ADA deserves to be celebrated. But it can't be seen as the final destination for disability rights. We deserve more.
