Portlanders with disabilities still fighting for rights
When President George H.W. Bush signed the Americans with Disabilities Act into law on July 26, 1990, he famously announced: "Let the shameful wall of exclusion finally come tumbling down."
The ADA was life-changing legislation. It required cities, restaurants, and other public places to become more accessible. Curb cuts, elevators, automatic door openers — all made ubiquitous because of the ADA.
But the ADA did not end exclusionary practices. Though the ADA revolutionized accessibility in the United States, people in the disability rights movement are still fighting for recognition and equal rights.
"We say the ADA is the floor, and a lot of people still haven't gotten out of the basement," said Leila Haile, a community organizer and ADA Title II coordinator for the city of Portland.
Activism and legislation
The Americans with Disabilities Act of 1990 prohibits discrimination against people with disabilities and requires employers to make reasonable accommodations for them so they can complete their work.
Before the ADA passed, people with disabilities could be discriminated against in all parts of life — jobs, housing, school; the list is endless. Children with disabilities often had to attend segregated classes, and people with severe disabilities could be institutionalized and in some cases, forcibly sterilized.
"For the first time, when it was signed into law in 1990, there was a clear recognition by the federal government that the rights of people with disabilities, whether that be employment setting, in a public setting, or even in the college and university, that we have rights and we can no longer be segregated and discriminated against," said Emily Cooper, legal director for the nonprofit Disability Rights Oregon.
The ADA is the second piece of disability rights legislation passed in the 20th century. The first, known as Section 504, was part of the Rehabilitation Act of 1973. It was meant to ban discrimination for people with disabilities for any program that received federal funding. But the section was poorly enforced and multiple administrations attempted to delay its implementation and weaken the law, leading to protests and demonstrations by disability activists.
The ADA can be enforced through complaints to the Equal Employment Opportunity Commission and the Department of Justice, which can then open an investigation. State and local governments also enforce ADA requirements within their jurisdictions. But often, enforcement is done through costly litigation, especially when it's unclear whether a disability is covered or whether a requested accommodation is reasonable.
Much changed; much more still needed
For many, the ADA was life-changing legislation. "Structurally, for me, it has changed a lot," said Jan Campbell, president of Disability Rights Oregon's board.
Campbell was in her 40s when the ADA passed. "When I was growing up, we didn't have any laws that protected people with disabilities," she said. "So we really had no opportunities to participate independently in society."
Campbell uses a wheelchair. She had to attend a segregated school for children with disabilities. When she went to college, many of her classes were upstairs in buildings without elevators. "So I had to ask people to, you know, pull me in my chair," she said. "If I knew people, sometimes they'd help me. If not, I had to ask people, which was, you know, very very difficult and embarrassing."
She got a degree in teaching, but was denied a teaching position because of her disability. "They thought that the disability would be harmful to the kids that I wanted to teach," she said.
She eventually was able to get a job with the city of Portland, working in affirmative action, which is where she worked when the ADA became law. She had concerns about implementation because she saw how poorly enforced Section 504 was. "But at that time, I thought: We're on the books now," she said. "We have laws to protect us. And we'll have the opportunities to participate in our society."
Gabrielle Guedon, Oregon Self Advocacy Coalition executive director, was only a year old when the ADA passed. "But I know the impact it's done for everybody around the whole nation," she said. "It's actually changed the lives of so many people."
She said hearing the stories of friends who fought for the ADA about being institutionalized and forcibly sterilized were part of the reason she became a disability advocate.
No 'silver bullet'
While the ADA was revolutionary, it was not a silver bullet — activists say more work needs to be done to ensure equality.
Guedon said people with intellectual and developmental disabilities still struggle with access to health care and employment.
Guedon said she was lucky to have a mother who advocated for her and taught Guedon to advocate for herself, and others aren't as fortunate. Without that advocacy, Guedon said, people with disabilities can be isolated and dehumanized.
"There's so much attitude towards people with disabilities," she said.
ADA accommodations are often treated as one-size-fits-all and don't account for individual needs, said Michael Moore, who earned a law degree after he became legally blind.
"We're all kind of classed under this structure of disability," he said, "but each of our disabilities are unique to us."
Without an automatic tool for enforcement and widespread education for everyone, businesses and governments often do the bare minimum to ensure accessibility.
"I travel with a guide dog. And a lot of times, small businesses don't know that they have to abide by the rules of the ADA, so I've been refused service," Moore said. "And you can wait, and call a police officer and file a report. Or you can just go somewhere else. And so a lot of people just go somewhere else."
He said that the bureaucracy around trying to receive benefits from the government feels as though it's designed to prevent access, and many people stop trying out of frustration.
He was denied three times before being approved for disability benefits.
Allison Falleur Barber, a financial empowerment coordinator and Disability Rights Oregon's secretary on its board of directors, said that attitudes toward people with disabilities have not changed much. "I fear that people will just think that we've reached this point of equality that we really haven't," she said.
Falleur Barber was only 8 years old when the ADA was signed into law. "I was actually brought up in a world where I didn't have to think about not accessing a building or having to fight for that very right," Falleur Barber said. "So I just have a bit of reverence for people who took that fight so that I could have a more normal existence."
However, Falleur Barber pointed out that employers are able to discriminate by simply saying they aren't hiring a person with a disability for unrelated reasons. Enforcement isn't automatic, she said. That means people may have to sue, but few who need a lawyer actually have access to one.
People with disabilities still don't have equal access due to financial constraints as well. According to the National Council on Disability, only around a third of those with disabilities are employed, and they live in poverty at twice the rate of people without disabilities.
There also is a cap on wages and savings for those who receive Social Security disability insurance payments or are enrolled in Medicare, Falleur Barber said. That means people receiving benefits may have to choose between receiving those benefits or a higher paying job.
"You've been told by the structures that provide your care, that provide your financial benefits, that sort of thing," she said, "'You can only think so far.'"
Leila Haile with the city of Portland said that, although it's been 30 years since the ADA passed, many cities aren't fully compliant.
They pointed to Portland's sidewalks as an example. Portland's sidewalks are uneven and often don't have curb cutouts, they said. "If you are a wheelchair user in this city, chances are you are in the streets a lot."
Haile said that capitalism and fascism are barrier systems that prevent people with disabilities from full equality.
"The system of capitalism is inherently detrimental to disabled bodies because it doesn't allow us to fully participate and that automatically disenfranchises us, right?," they said. "Why should I have to pay for something that I need to live and is readily available? And people are just making a profit off of it."
Saara Hirsi, a refugee from Somalia who came to Portland in 2002, works with refugees and immigrants with disabilities in Portland. "There is still a gap in diversity and inclusion in the disability spaces," she said.
Hirsi said she didn't know about the United States' history of racism when she first came to the states, and she faced discrimination in school and the job market. "Disability itself is a challenge," she said. Having other identities, like being a person of color or speaking English as a second language, she said, poses additional challenges.
According to the U.S. Centers for Disease Control and Prevention, Black and Native people in the United States are more likely to have a disability than white people.
Hirsi said that the ADA is not inclusive enough to people of color and people who don't speak English. As an example, Hirsi said many accessibility documents are not translated into other languages, nor do they provide training for people new to the system. Because of that, Hirsi said many immigrants don't know their rights under the law.
Joanne Johnson, the city of Portland's Disability Program coordinator, said that the problems go beyond attitudes. "The ADA didn't dismantle ableism, right?" she said. "And so we still have a very ablest white supremacist society, capitalist society that expects people with disabilities to exist within that."
Because enforcement of the ADA is not automatic, people with disabilities have to advocate for themselves because they are often afterthoughts. The current system is set up so that people with disabilities have to ask for accommodations.
"But that kind of default puts the burden on people with disabilities," Johnson said. "If we're making spaces more accessible as the default, we're going to support a lot more people to be a lot more engaged and have a lot more decision making power in spaces."
Looking to the future
As advocates and activists look to the future of the ADA, they see many possible next steps.
The Disability Justice movement has gained traction over the last 15 years. The framework focuses on rebuilding society with an understanding of how disability relates to other forms of oppression, like race, gender and sexuality.
Johnson said she hopes that communities will begin to adopt that framework, so "we're addressing multiple oppressions at the same time. Or at least, addressing them in ways that recognize the interconnectedness of oppression."
Haile, who is a disability justice organizer, said that disabled people, like other oppressed people, have found ways to circumnavigate the system to survive. "That's true of disabled folks. That's true for Black folks, That's true of queer and trans folks. Anyone who's been left out has had to find a way to survive," they said.
Haile pointed to mutual aid groups as an example of how systems outside capitalism can be created to support each other.
There is no one next step for the disability justice movement, Haile said. "There are as many ways to step into Disability Justice as there are disabled people, right? Because we all have different skill sets. We all have vastly different experiences and that true spectrum of diversity of tactics is what makes our movement so powerful."
Disability impacts people in every community, Falleur Barber said, and uniting the movement around educating and changing attitudes. "The key piece in moving and shaking has to be at a grassroots level, has to be with social change, social impetus and social organization."
Guedon said that the ADA made significant changes for people, but it's time to push for more. "It's time for us to come together," she said, "so people can live equal lives."
The education of Richard Pimentel
After the Americans with Disabilities Act passed, Richard Pimentel said he remembers sitting in Evan Kemp Jr.'s office. Kemp was the commissioner of the Equal Employment Opportunity Commission, appointed just a few months before the ADA was signed into law in 1990.
A group of reporters were waiting to speak with Kemp, Pimentel said, and Kemp asked Pimentel to stay. "This reporter came up. I'll never forget, he said. 'Well, Mr. Chairman, now that the ADA has passed, people with disabilities will have no more problems anymore, right?'" Pimentel recalled.
"He said, 'A lot of people think that the ADA is going to lift people with disabilities up to where they want to be," Pimentel said. "'It's not.'"
"'The ADA was never meant to be a trampoline," Pimentel recalled Kemp said. "'It was meant to be a safety net. It was a place below which no one with a disability should ever have to go.'"
The Americans with Disabilities Act of 1990 prohibits discrimination against people with disabilities and required employers to make reasonable accommodations for people with disabilities so they can complete their work.
The Disability Rights movement was largely born in Berkeley, California, as activists and advocates like Judy Heumann and Justin Dart Jr. turned direct action into legislation. This included demonstrations like the 504 Sit-In, in which demonstrators around the country occupied federal buildings for up to 28 days, and the Capitol Crawl, where around 60 activists crawled up the steps of the U.S. Capitol without assistive devices to highlight the need for accessible infrastructure.
And a small but pivotal role in the passage of the bill started in Portland.
Richard Pimentel's story is already well known to some, especially those who have seen the 2007 film "The Music Within," starring Ron Livingston as Pimentel and Hector Elizondo as Ben Padrow, a Portland State University speech professor and coach of the PSU College Bowl team, who played an important role in Pimentel's life.
Pimentel was born in Portland, attending Jefferson High School in the 1960s. When he graduated, he didn't have the money to go to college, and then he got a notice in the mail: he was being drafted to the Vietnam War. He spent four years in the U.S. Army.
He returned from the war in 1970, deaf and with a traumatic brain injury.
Pimentel decided to attend college to become a professional speaker and business consultant, but he says the Veterans Administration wouldn't pay for him to attend college for that.
"They had a book at that time that (listed) all the disabilities that were there and what the good jobs were for them," he said. "And that's why I developed the idea that one should not let one's opinions be mistakenly thought of as knowledge or expertise."
Pimentel went to Portland State University, and soon he met Art Honeyman, whom he calls an "icon."
Pimentel first met him in a PSU cafeteria, where he said Honeyman, who had cerebral palsy, was struggling to put a straw into a soda can. (Honeyman was played by Michael Sheen in the 2007 film.)
"I walked over to him and I told him, 'I think you have a Coke problem,'" Pimentel said.
Pimentel said he told Honeyman not to talk with him because he thought it would be too difficult to understand Honeyman with his deafness.
"Then he started talking to me and an amazing thing happened," Pimentel said. "His speech, so affected by the cerebral palsy — uniquely affected by it — and my hearing, uniquely affected by the explosion that I was in, perfectly matched.
"What are the odds on something like that?" he continued. "I could understand him. I was darn near the only one who could. The deaf guy."
They became fast friends. Pimentel credits Honeyman with inspiring him to become a disability activist and often tells the story of the moment that radicalized him — in a pancake house in 1974.
It was Honeyman's birthday, Pimentel says, and Honeyman wanted pancakes. But the server at the restaurant refused to serve them.
"We refused to leave," Pimentel said. "And the waitress said, 'I'm gonna call the police.'"
Police arrived, and told them to leave or they would be arrested.
"I'll never forget it. He said, 'I want to go to jail.' And then he said, 'And Richard wants to go to jail, too.'"
At the time, Portland had "ugly laws" — police could fine people for being "unsightly." According to the Harvard Civil Rights-Civil Liberties Law Review, Portland had one of the earliest "ugly ordinances" on the books.
They were arrested and released the next morning.
The incident led Pimentel to get interested in learning about how people with disabilities are treated. "I gave up the idea of becoming a business consultant and started working to try and change attitudes towards people with disabilities," he said.
He eventually created a training program called "Windmills: Changing the Perception of Abilities" in 1981, which he still teaches today. The program is designed to destigmatize employing people with disabilities.
"There are all these people with disabilities who are throwing themselves in front of buses in California and chaining themselves to doors and there was this movement to make the world accessible," Pimentel said. "My role was training employers and changing attitudes towards people with disabilities and changing attitudes of employers so they would have more confidence in working with people with disabilities," he said.
Pimentel became a consultant for the Equal Opportunity Employment Commission and helped write the manual explaining how the ADA would work legally, and he spent the 1980s working with employers to get more comfortable employing people with disabilities.
He continues to train employers and said he's currently working on a training on adapting for the pandemic. But looking to the future, Pimentel said he hopes that his work will allow future generations to be able to "live a spontaneous life."
"We wanted to give young people with disabilities the right to live a life that almost everyone else takes for granted," he said. "You don't have to call ahead to see if you get in. You don't have to see if you're welcome. You don't have to make phone calls, figure out what you have to do. You know, you want to do something, you go do it and you just know that things are going to be accessible."
"I will not be satisfied till we reach that goal," Pimentel said. "I'll probably go into my grave unsatisfied, but I'm still keeping it in mind."
Gina Scalpone served as the Snowden intern for the Portland Tribune during summer 2020. She is a graduate of the University of Oregon.
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