Americans with Disabilities Act turns 35: Life before and after

Sometimes, when she’s out shopping or running errands, Shelby Hintze of Salt Lake City finds places where she simply cannot go. Hintze, 32, was born with a progressive neuromuscular disorder called spinal muscular atrophy and has used a wheelchair her whole life. Housing is especially pesky. She said she has exactly two friends who live in homes that she can enter with her wheelchair.

Linda Disney, 72, was born blind in one eye and with retinopathy of prematurity disease. She’s always had low vision, though she didn’t know it as she had no way to compare what she was seeing to what others saw as she was growing up.

In 2018 she graduated from a nine-month course offered through the Utah Division of Services for the Blind and Visually Impaired and the following year, while on a cruise, her retina detached, and she effectively lost most of the rest of her vision, although she retains excruciating light sensitivity. She now has a guide dog, Brook, a 5-year-old golden lab that’s been her mobility tool for the past two years.

Neither Hintze nor Disney navigated their disability before passage of the Americans with Disabilities Act, which is turning 35 this weekend — a milestone for the hard-won civil rights law that prohibits discrimination against people with disabilities in all areas of public life. The act was designed to include those with disabilities in every aspect of society, ensuring they have the same rights and opportunities as everyone else.

Joni Eareckson Tada — her name is pronounced like Johnny — on the other hand, has used a wheelchair for 58 years after she broke her neck in a diving accident in 1967 and became a quadriplegic. She knows exactly what life was like before the federal law began to prohibit discrimination against those with disabilities.

She lived it daily.

Then she helped change it, serving on the National Council on Disability in the 1980s. Among its priorities, said Eareckson Tada, who is best known for her “Joni and Friends” Christian ministry, was to sketch out what the council thought would be the first draft of civil rights legislation on behalf of people with disabilities. The group was certain more would follow.

At the time, she said, Americans with disabilities were having trouble getting good jobs because of discriminatory policies in hiring and accommodation. “Our biggest thrust was in the area of employment and second was public accommodations.” Housing access was also challenging. The Fair Housing Act was to have addressed many of the issues, “but we thought we had to make certain that landlords include voucher holders and whatnot, and we wanted to defend the fact that more accessible housing was needed,” Eareckson Tada told Deseret News.

Their first attempt had short timelines — they were anxious to see rapid change after feeling excluded from public life for years — and Congress rejected it. So they tried again, coupling phased-in timelines with a lot of personal effort on Capitol Hill to ensure all the senators and representatives knew what was in the bill and why. It passed in 1990 and was signed into law July 26.

She’d been working on the issue for four years, but wasn’t done. Proponents still had to educate communities across the country. “It was hard work, but it was very worthwhile,” Eareckson Tada said. “I’m glad I took a chunk of my life to invest in passage of the ADA.”

What the ADA covers

The law covers different aspects of life for those with physical or mental impairment that limits one or more daily activities, those with a history of such an impairment or those perceived as having one. It applies to:

• The workplace. Employers must make reasonable accommodation for employees who have disabilities. Discrimination is illegal in hiring, promotions and pay.
• Public services. Governments at all levels must make services and programs accessible for people with disabilities, including education, transportation and voting.
• Public accommodations. Businesses that serve the public, such as theaters and restaurants, must be accessible to those with disabilities. Where possible, building design and communication barriers must be removed.
• Telecommunications. Telephone and internet companies must provide services to facilitate communication for people with hearing or speech disabilities, such as relay service for those with hearing impairment.

The act outlines enforcement and legal protections and has provisions to prevent retaliation against those asserting their rights under ADA.

The law was always intended to be the starting point, the floor for inclusivity, Eareckson Tada said. But as Hintze sees it, it has stalled and some politicians would even like to roll it back.

“I can see how monumental and important it was from what it was before, but can look and see a lot more to do,” said Hintze. She calls ADA an “incredible piece of legislation that was meant to be the first step and instead we are chiseling away at it. That hurts.”

She adds that it’s easier to tear down than build. If a right is lost, it’s hard to get back.

Hintze and Eareckson Tada agree that enforcement is a challenge. You can ask people nicely to obey the law. You can file a complaint. But “courts have the teeth,” said Hintze, a social media manager at Intermountain Health. The person with the disability is often put in the position of having to sue in order to force compliance. “That requires time and money — two things most people with disabilities do not have,” she added.

Emily Shuman directs the Rocky Mountain ADA Center, which provides technical assistance and training on the law across six states. The center is based at the University of Northern Colorado and is federally funded by the National Institute on Disability, Independent Living and Rehabilitation Research.

She emphasizes the importance of ADA in protecting both apparent and non-apparent disabilities, noting that most disabilities are not visible.

People with disabilities face many challenges, she said, including physical barriers, rigid policies, attitudinal barriers and communication issues. Physical barriers include ramps, parking spaces and bathroom stalls, while rigid policies and lack of flexibility can create significant issues. Attitudinal barriers, she said, stem from assumptions and perceptions about disability, making it difficult for people with disabilities to participate meaningfully.

Digital accessibility is being wrestled with. It’s particularly interesting because almost everyone has a digital life and the internet wasn’t even much of a thing when ADA passed in 1990. Shuman said people with disabilities need assistive technology to access digital content, which requires websites and mobile apps to be designed in an accessible manner. The ADA center offers free online training on the topic and Shuman said it’s important for businesses that seem overwhelmed at the prospect to take it one step at a time and seek credible information to ensure compliance.

Brook is for Disney one of the greatest gifts of ADA, because it made her guide dog welcome, which opens doors for her. Some still don’t understand, though, that the dog is a tool, not a pet. Recently, flying home, the gate attendant handed off her carry-on bag to a baggage handler to stow under the plane. The guide dog, she was told, was her allowed carry-on item. She was left without her wallet, her ID and her dog’s supplies. She was horrified and stressed.

But for all the miscommunication and incorrect assumptions, ADA has created significant gains, these women all agree.

Eareckson Tada saw the fruits last year when she and her husband and several friends went to Yosemite National Park for vacation. They stayed in a small cabin near the park but went in every day. The accommodation to her disability and her wheelchair amazed her, she said.

Paths were paved, signage was clear and there were accessible bathroom facilities. She was able to visit several of the upper lakes, as the park used golf carts to transport wheelchair users, who previously would have had no access.

It is a far cry, Eareckson Tada said, from the years she went down back alleys past trash receptacles, entered through a side door and passed through the kitchen to get into a restaurant. And she remembers well a friend who was “often denied a table at a restaurant because the maître d was concerned she would be too much of a distraction.”

Many of her friends in wheelchairs have waited for buses that never stopped because they weren’t equipped with mechanical lifts. That even happened after ADA passed, until several court cases reinforced the importance of bus drivers providing service to all people, she said.

Hearts and minds both

The day ADA was signed on the White House lawn by President George H. W. Bush, the National Council on Disability held a reception at a nearby hotel. Eareckson Tada said she won’t forget what the group’s executive director, Paul Hearne, who used a three-wheel scooter, said.

“This landmark civil rights legislation for Americans with disabilities is great in that it will remove discriminatory policies that prevent qualified people with disabilities from securing good jobs. It’ll provide ramps into restaurants. It’ll provide ramps into public accommodations, museums, buildings, sports, arenas and it’ll provide mechanical lifts one day on every bus in America,” she quoted Hearne.

“But this bus will not change the employer’s heart. This bus will not change the heart of the maitre’d.’ Then he lifted his glass and said, ”Here’s to changed hearts."

Civil rights movements always ponder whether to change hearts or laws first. ADA was no different. But Hintze said it’s harder to change minds until people know someone or feel they have a personal connection.

ADA has been the law for many years, but real change happens when hearts join in, per Eareckson Tada. She was weeping when Hearne finished because changing hearts is “the job of a church and all faith communities. It’s the gospel that changes people’s hearts.”

That has been part of her own ministry for decades, she said.

Sometimes people dismiss someone’s challenges or don’t even recognize them. Disney remembers being in a crowded elevator in 2006 and having real trouble reading the buttons because of all the chrome and glare. She knelt for a better look and someone snarked to a companion that she was stoned or drunk.

She told him she couldn’t see well. “Uh huh,” he said dismissively. “Where’s your white cane?”

She also had a boss who didn’t provide any accommodation for her vision so she could be productive. By the time she was legally blind, ADA had provided some relief, but it didn’t solve everything, she said.

Disney thinks technology is the biggest misconception. It’s awesome it has come so far, she said. But people think blindness is the same for everyone: You are blind or you can see. Low vision covers a broad spectrum. “Tech helps but it also has to be adaptable and accessible for different types of low vision and vision loss.”

Some reactions are fully unfathomable, she said. For instance, she and a large group of people with vision impairments are going on a cruise and several asked for an audio description of the play. The cruise line representative offered an American Sign Language interpreter, which helps those who are hearing-impaired, but will do nothing for those who have trouble seeing.

Hintze wants businesses to realize the financial benefit of including people. “Numbers fluctuate, but one organization said that about 1 in 4 around the world have some sort of disability. It’s the only minority anybody can join at any time. If you can’t think about this in terms of helping other people, think about it in terms of helping your future self.”

Shuman believes that many organizations and employers are genuinely interested in going above and beyond the ADA to create inclusive environments. She also thinks that exposure to those with disabilities is important to changing attitudes.

Eareckson Tada points out that many states have stricter inclusivity rules than the law requires. “There are many states whose building codes and access codes are much more strict than even the ADA.”

Helping build the change they need

Disney, who lives in Lindon, has been working with the Utah Department of Transportation on improving road safety for those who are visually impaired around crosswalks. UDOT’s Degen Lewis, a traffic signal engineer, called her “a force of nature.”

To help him understand the needs of those who are blind or have low vision, Lewis signed up for a program through the Utah Schools for the Deaf and Blind. They blindfolded him, gave him a white cane and had him cross the street.

“That was a really good experience for me. It definitely helped me gain a better appreciation and understanding of what a person with disabilities, specifically blindness, faces when they have to cross our busy roads,” Lewis said.

UDOT has been placing accessible pedestrian signals technology at crosswalks to help those with low or no vision. And when Disney encounters a crosswalk that doesn’t give an audible signal, she tells Lewis. His office has prioritized installing the sound-signal technology along her route and others where he knows they are needed. They’ll eventually be widespread, but he’s putting them in first where individuals use them. UDOT has prioritized intersections that need APS and people can suggest locations using an online form. Said Lewis, “I have 360 various traffic signals and flashers that I’m responsible for in the state. So I really do need the public to say ‘Hey, I’ve got a question,’ or ‘I’ve got a concern’ or ‘I have a need,’ in order to meet them.”

Per UDOT, the signals say “wait” or “walk sign is on.” A bluetooth-linked app (the Ped App) can provide hearing-impaired users with a vibration and other notifications to help them understand when to stop or move forward.

Any step that bolsters independence is empowering, Disney said.