Joy Johnson, Tatiana Lee and Maggie Lenart have all benefitted from the Americans with Disabilities … [+] Act of 1990.
Joy Johnson; Tatiana Lee; Maggie Lenart
When Joy Johnson was growing up in Chicago, she often felt isolated and discounted by her teachers and peers. The 43-year-old mother of three is autistic, and didn’t speak for the first 12 years of her life. Because she was non-verbal, people often assumed she wasn’t intelligent or capable. Her teachers threw her into the system with no accommodations or assistance.
That’s because, at the beginning of Johnson’s educational journey, there were no laws in place to ensure students like her received the proper accommodations and education they deserved. Even after the Individuals with Disabilities Education Act of 1974 (IDEA) and Americans With Disabilities Act of 1990 (ADA), Johnson spent the rest of her schooling continuing on the track she had already been put on— unaware and uneducated about the new federal laws.
Instead of receiving a diploma, Johnson stayed in high school until she ‘aged out’ at 21 and only received a certificate of completion.
“I had been conditioned to think I didn’t have potential,” Johnson said.
According to the Congressional Research Service, one million children with disabilities were excluded entirely from the public school system in the 1970s. Millions of people like Johnson, who attended public schools, were left behind.
But for the students with disabilities that came after, much would change, because of IDEA and the ADA. It’s important to look back now, 30 years later, to see what the ADA has accomplished and what could still be done.
The beginning
Former Rep. Tony Coelho who is credited with pioneering the ADA.
Wikipedia
Tony Coelho, a retired Democratic congressman from California, was around 16 when he was in a pickup truck accident on his dairy farm in Central Valley, California. He suffered a minor head injury, but was seemingly okay.
One year later, while in the barn milking cows, he collapsed; the next thing he knew, he was waking up in bed, unable to see, with the voices of his parents and a doctor surrounding him.
The doctor told his parents that he had epilepsy, but because of the Canon Law, there was a stigma among Catholics that people with epilepsy were possessed by the Devil. His parents ignored the doctor and never told Tony about his diagnosis.
Coelho’s parents took him to numerous physicians, and even eventually forced him to see witch doctors. After the fourth witch doctor, Coelho said no more — but he still didn’t have answers as to why he was continuously seizing.
It wasn’t until college, when Coelho had to take a physical for a job inquiry to become a Catholic priest, that he found out the truth.
“The doctor said, bad news: the Catholic Church, in 400AD, said if you have epilepsy you’re possessed by the Devil, so you can’t be a priest.”
Coelho wasn’t worried; he was actually thankful to finally have a diagnosis. And he had been successful during his college years, and he knew he’d be able to land another job.
He started to go on interviews, and noticed every application included questions about having a disability. Coelho always checked the proper boxes, answering truthfully. In return, he never got a call back.
“I realized again the stigma was following me,” Coelho said. “I felt that everything I had ever loved in my life turned against me at this point…my parents, my church, God.”
Coelho became severely depressed and even suicidal. It wasn’t until a priest friend recommended him for an assistant job with Bob Hope, the stand-up comedian, and actor, that his life began to change. Coelho said Hope became a father figure for him, and he suggested Coelho go into politics.
He took his advice. He wrote a letter to his congressman, Bernie Sisk, who happened to be looking for someone with an agricultural background to assist him in Washington. Coelho got the job and never looked back. He was on staff for 13 years.
“I would have seizures, and the congressman would just wait for me to get through them. I’d rest up and get back to work,” Coelho said. “The seizures were never a problem, which was so refreshing to have someone accept me for who I was.”
Coelho eventually ran for Congress in 1978 – and he won. He vowed to use his platform to fight for the rights of people with disabilities. Coelho started by amending bills dealing with epilepsy and other disabilities, only to realize it wouldn’t do any good, because the fundamental rights of people with disabilities weren’t protected under the law.
“People could discriminate against us at will. They could say ‘You have epilepsy, I’m not going to hire you,’ or ‘You’re blind, so I’m not going to serve you at a restaurant,’ Coelho said. “They could say ‘You’re in a wheelchair, get out, you’re a fire hazard.'”
“And it was all legal.”
Coelho knew he needed to create change, so he started working on legislation. That legislation eventually became known as the American’s With Disabilities Act, bipartisan legislation sponsored by Coelho and retired Republican Senator Lowell Weicker. Coelho introduced the bill to the House on May 9, 1989.
Although it would eventually be adopted overwhelmingly, it took what Coelho calls, “a grassroots effort” to produce support for the bill. It went through five committees and twelve sub-committees. Coelho said the Speaker of the House at the time even attempted to encourage him to withdraw the legislation, saying it was too ambitious and fearing it would have an adverse reaction among the public.
But Coelho wouldn’t quit, and on July 26, 1990, the ADA was signed into law by President George H.W. Bush.
Accessibility
Tatiana Lee, who has spina bifida, knows the access she has while out and about today, is because of … [+] the ADA.
Brad Swonetz for Zappos Adaptive/ Styled by Stephanie Thomas
37-year-old Tatiana Lee of Los Angeles was born with spina bifida, a congenital disability caused by the spine and spinal cord not forming correctly, and hydrocephalus, or water on the brain. Complications vary from person to person, but for Lee, this meant living in a wheelchair, paralyzed from the waist down.
Lee was 7 when the ADA was enacted. She says she knows the access she enjoys when out and about today wouldn’t have happened if not for the ADA.
“I have access to public places, with ramps,” Lee said. “I can get up to the bus or to the sidewalk.”
The ADA mandated buildings and facilities to make accommodations for people with disabilities, including curb cuts, ramps on sidewalks and flat or ramped entrances into buildings. As a result of the ADA, businesses provided designated disability parking spaces too.
Jeff Clare, who has spina bifida, says the ADA has allowed him to be more independent.
Jeff Clare
49-year-old Jeff Clare of North Chesterfield, Virginia, was 19 when the ADA passed. He, too, has spina bifida, and before the ADA, he often found himself unable to go to public places because of accessibility issues. But since the ADA, he says, his life has changed significantly for the better.
“I’m now more independent,” Clare said.
“In the past, if I wanted to go somewhere, I would always have to have someone with me, someone to grab a door or push me up on a sidewalk. Now, I’m independent and go wherever I want, whenever I want, thanks to ramps and automatic doors.”
It’s a similar story for 38-year-old Ben Spangenberg, who also has spina bifida and grew up in Palo Alto and Carmel, California. He is in a wheelchair and says he often found accessibility to be an issue when it came to public spaces and public bathrooms.
“As the ADA started to be implemented, I saw a gradual change to the point that when I graduated high school in 2000, it was rare to find something non-accessible,” Spangenberger said.
Although physical accessibility has improved across the country for people with disabilities, not every business follows the law.
“Still to this day, 30 years later, there are places that are not wheelchair accessible,” Lee said.
“I’ll go to some places, and they’ll say ‘they have a grandfather clause’ which I looked up and it’s not even real.”
Employment
Tatiana Lee says the ADA has provided her access to employment.
Tatiana Lee
Before Lee moved to Los Angeles 10 years ago from Pennsylvania to pursue a career in acting and modeling, she remembers a time when she tried to find a job at a movie theater and a beauty store. Neither gave her a chance.
“I couldn’t even get hired at a movie theater to collect tickets,” Lee said. “They saw my wheelchair as a safety hazard and didn’t think I was capable.”
But she was determined, and decided to make the trek across the country to find stardom, only to have door after door closed in her face. The worst part was the lack of accessibility, even with the ADA in effect for decades, that she experienced.
“I would go to networking events to try and meet people and have people get to know me and get acting jobs and I literally couldn’t get into these events because they weren’t wheelchair accessible,” Lee said.
“You know how people say figuratively ‘I can’t get into these rooms’ because they can’t meet the right people? Well I physically couldn’t get into the rooms.”
Lee started a blog to share her experiences as a person with a disability in Hollywood and soon became an advocate for better accessibility and acceptance.
At the same time, she finally started receiving callbacks. It took her four years to land her first role: an Apple commercial.
“Although it’s still hard to find employment as a wheelchair user or someone with a disability period, because people judge you based on your disability – because of the ADA, they at least have to interview and consider you so I have more access in that way,” Lee said.
Employers, local and state governments, employment agencies, and labor unions are expected not to discriminate against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, etc. The ADA has also made job accommodations for people with disabilities more common.
“There are many barriers still, but people have to try and give me a shot when before the ADA, that wasn’t a thing,” Lee said.
Education
Maggie Lenart, who is hard of hearing, believes she wouldn’t have received accommodations in school, … [+] had it not been for the ADA.
Maggie Lenart
Maggie Lenart, 36, of Richmond, Virginia, was just 6 when the ADA passed. Lenart is hard of hearing; she is severely-to-profoundly deaf in her right ear, and moderately-to-severely deaf in her left ear.
When she was set to begin schooling, her parents decided not to send her to the assigned school based on where they lived. They sent Lenart to a particular public school in Fairfax, Virginia, that accommodated children with hearing loss, before the ADA.
Lenart said every grade had a ‘hard of hearing’ class and audiologist. There were also speech therapists on-site, and all media was closed captioned.
But after the ADA and IDEA legislation passed, all public and private schools were required to make accommodations for students with disabilities. Students with disabilities were not to be excluded from any educational opportunities, denied services, segregated or otherwise treated differently than their non-disabled peers.
Maggie Lenart received accommodations during her educational career because of the ADA.
Maggie Lenart
After third grade, Lenart switched back to her base school. Throughout her educational career, she received accommodations like sitting in the front of the classroom, teacher instructions had to be written down, and she was assigned an itinerant or student advocate whom she met weekly and who followed her throughout her entire educational career.
In college, Lenart continued receiving similar accommodations to help her succeed.
“I don’t think I would have received many accommodations without the ADA,” Lenart said. “Even now, in the working environment, it’s still sometimes a struggle in my professional life to just get correct closed captioning on meetings.”
“If the ADA weren’t a law, people wouldn’t have to do it.”
Mass Transportation and Telecommunications
Lenart says, over the years, thanks to the ADA there have been improvements in telecommunications. It’s because the ADA included the establishment of a nationwide system, permitting the use of telephone services for people with hearing or speech impairments, and closed captioning for the deaf or hard of hearing.
It also created vast improvements to public transportation, despite initial pushback from the bus and public transit companies because of the price tag. But today, because of the ADA, mass transportation— both public and private— have become much more accessible. Some of the requirements include lifts and ramps for wheelchairs, turning room, handrails and pull chords, and slip-resistant surfaces. Service animals are allowed on board, and public transportation systems must provide adequate information on services in accessible formats to people with disabilities, such as large print and braille.
“Because of the ADA, the federal system can enforce cities, states, and corporations to make sure they are not violating the ADA and can take action against them if they are,” Coelho said.
But despite improvements to both, Lenart feels more needs to be done for the deaf and hard of hearing community. She’s thankful for closed captioning across television programming but says it’s often wrong, and says she sometimes needs her husband to interpret the captioning for her.
Government Services
When Tatiana Lee was born, her mother was told by doctors to put her in an institution.
Tatiana Lee
When Lee was born, doctors encouraged her mother to put her in an institution. They said she would have no quality of life.
Although this sentiment and way of thinking hasn’t been completely eradicated, the ADA has encouraged community-based residential treatment programs and individualized services versus institutionalization of people with disabilities.
It seemed to begin after the Supreme Court’s interpretation of the ADA in Olmstead vs. LC.
The Olmstead case involved Lois Curtis and Elaine Wilson, who were voluntarily admitted into the psychiatric unit at Georgia Regional Hospital. According to Autism Now and The Autistic Self Advocacy Network, after receiving treatment, both were told by mental health professionals that they could be moved to a community-based program. Both were kept for several years in the institution after the end of their treatments.
Curtis and Wilson filed a lawsuit under the ADA for release from the hospital. The court’s conclusions in this case continue to reverberate today: on June 22, 1999, the court ruled in favor of Curtis and Wilson, which ultimately mandated public organizations to provide community-based services to people with disabilities.
Digital Accessibility
Heath Thompson, CEO of AudioEye, is working to eradicate all barriers to digital accessibility.
Heath Thompson
As an 18-year-old, Heath Thompson enjoyed the summer and was preparing to start college, when he was severely injured in a car accident. He became a paraplegic. It was the 70’s, about 12 years before the ADA was enacted, and Thompson had to re-learn how to navigate the world he once knew, from a wheelchair.
“I had to learn how to drive a car with hand controls,” Thompson said. “And there was no handicapped parking. You just had to find a place where there was no car next to you because you had to get your wheelchair out too.”
The following years weren’t always comfortable and were full of a lot of planning. If he wanted to go out anywhere, he had to call ahead to see if he’d be able to get inside. Thompson’s college courses were held in inaccessible buildings so that he couldn’t participate in class with the rest of the students. He would have to use service entrances and many back alleyways to get into buildings. Then, in 1990, after the ADA passed, Thompson watched as life started to change. He saw the physical world transform. His accessibility and access increased exponentially.
But one place he didn’t see an increase in access over the years was the Internet.
As a technologist, it was easy for him to spot. Part of the reason is that, when the ADA was enacted, the Internet wasn’t as pervasive as it is today, so it didn’t specifically cover it.
Thompson wanted to combat the problem and assist businesses in making their online platforms and websites accessible to people with disabilities. Now, he gets to do that daily as the CEO of AudioEye, a technology company that Thompson says aims to eradicate all barriers to digital accessibility.
“No matter what I want to do, whether it’s going to a movie with my family, go out to eat, or take my kids to a trampoline park, I know I can do that because of the ADA,” Thompson said. “I know I’ll be able to get out of my vehicle when I get there, have a place to park, and there will be a curb cut, and if I need to use the restroom, there will be an accessible restroom.”
“It’s that level of access we want to extend to the digital world too.”
According to Thompson, there are 1.4 billion websites globally, and out of those, a tiny percentage is barrier-free for people with disabilities. Meaning, every day, a person with a disability might encounter a problem when logging on their computer to browse the internet. The same goes for mobile applications.
Some of the issues people with disabilities face include a lack of captioning for the deaf or hard of hearing, no alternative text that would be voiced by a screen reader for the blind, and just a lack of information to help guide people with various disabilities.
“One of the biggest problems for digital content is the digital world changes at a much faster rate. In the physical world, a building is built, a ramp put in, and it’ll probably stay that way unless people are remodeling,” Thompson said.
“But with the digital world, remodeling is happening hourly, so the monitoring service we provide monitors for any of those changes and remediates them for our customers.”
Former Rep. Coelho, credited with pioneering the ADA, sits on the board for AudioEye. He said Title III of the ADA stipulates equality in “places of public accommodation” and believes that should include the internet.
The Supreme Court thinks so, too. In 2019, a blind man sued Domino’s Pizza over his inability to order food off their website. A panel of the 9th U.S. Circuit Court of Appeals sided with him stating the website’s inaccessibility impedes access to goods and services. Domino’s Pizza petitioned about their need to be accessible to the Supreme Court, which denied their petition, leaving in place the lower court decision against the company.
“I believe that the ADA applies to interstate commerce—what does that mean? Anything that goes on is covered,” Coelho said. “I take the view that the internet is the new national highway system.”
“Because of the appellate and Supreme Court decision – the ADA does apply to the internet, and companies have to provide access to the internet for people with disabilities.”
Attitudes and the future
The ADA has provided access and accessibility for people with disabilities for the past 30 years. It has made an immense impact in the United States, while also spurring other countries to enact similar legislation. Still, the people interviewed for this story say they continue to fight negative attitudes and stigma surrounding their disabilities.
“Most of the time, being a person with a disability, the disability is not the hard part,” Lee said. “The hard part is people’s attitudes toward your disability.”
“You can put all the ramps in the world, but if the people inside don’t want to accept you, you won’t be accepted.”
Lee, the actress and advocate, says one of the best ways to change people’s attitudes is through representation in the media, which is what she continues to fight for. She also advocates for more and better protections for people with disabilities under the ADA.
It’s something Coelho, as the original pioneer of the legislation, fights for, too. But, he says, they need to be strategic with how and when they bring up specific issues to Congress.
“Over the last 30 years, I and others have never wanted an amendment to the ADA to go before Congress. The reason is that I sensed that the Republicans were turning against us — it was no longer a bipartisan issue,” Coelho said.
“People would say ‘the ADA does not do X,’ and I would say, ‘I agree with you, but I am not going to let it be opened because we’ll lose a lot more than we gain.’”
Coelho brings up how in 2017, with a Republican-controlled House, legislation was passed to gut the ADA. It was called the ADA Education and Reform Act, and activists fought, saying that if the bill were enacted, it would remove businesses’ incentive to comply with the law. The Senate was able to stop it— but this is why— Coelho said proposing changes to the current legislation needs to wait.
“The good news is if Mr. Trump was to lose this time, and Joe Biden were to win, we might also have a Democratic Senate. And then what? I’ll be ready to open up the ADA because we’ll be able to get something through the House and the Senate.”
“But until then— I’m opposed to it.”
Joy Johnson was told she wouldn’t amount to anything because she is autistic. Today, she is a … [+] college graduate, has two masters degrees and is working on her Ph.D.
Joy Johnson
Meanwhile, because of the ADA, people like Joy Johnson, the autistic, mother of three who spent the beginning of her life trapped in the system, went on to get her GED, graduated from college, and received two masters degrees and is now working on her Ph.D. She is a behavioral specialist, helping people like her, people with autism and disabilities, learn their potential, and function in an ableist society.