Advocating for Change

Thirty years ago this month, a major victory was achieved in the ongoing civil rights movement for legal rights and protections for people with disabilities. On July 26, 1990, the Americans with Disabilities Act (ADA) was passed and signed into law, prohibiting discrimination on the basis of disability and helping ensure equal access to opportunities. 

This groundbreaking legislation is recognized today as the most comprehensive disability law in the United States, mirroring and supplementing the Civil Rights Act of 1964 and the Rehabilitation Act of 1973.  

In commemoration of this important anniversary, AMRPA spoke with Lex Frieden, who is widely considered the chief architect behind the ADA, about the meeting that sparked his advocacy journey, the years of work that led up to the ADA, what still needs to be done to ensure equality and promote equity for people like him, how to become an advocate for change and the power of medical rehabilitation.

A Chance Meeting

Throughout life, there are key moments that end up defining who we are and encouraging us to take the first step on a future path that we couldn’t have possibly imagined for ourselves before. For Lex Frieden, as a freshman in college, one of those moments occurred in November 1967 when he was involved in a car accident and sustained a life-threatening spinal cord injury.  

“I went to an acute care hospital in a really bad situation. I couldn’t move. I couldn’t feel anything.”

After his health stabilized in January 1968, his doctors gave him two options: go home and be in a local hospital for the rest of his life or go to a rehabilitation hospital, a new post-acute care offering at the time, to attempt to regain some level of independence. 

“My advice to people who have the option is to choose the elite care that one would get in a comprehensive medical rehabilitation facility.”

Faced with this decision, he enlisted the help of his father to visit some rehabilitation hospitals. After touring the very few choices around the country, one stuck out as the clear choice: TIRR (known today as TIRR Memorial Hermann) in Houston. With medical rehabilitation being a relatively new science in the late 1970s, there wasn’t much information on how best to choose care, but Lex recalled his father’s personal welcome from TIRR’s founder, Dr. William A. Spencer, as well as assistance from employees who had actually been patients at the facility and the overall relaxed, patient-centered environment.

“My life was changed at the point the decision was made by myself and my family to engage in a comprehensive medical rehabilitation program rather than just stop the world and go home and live in a hospital,” Frieden said.

In addition to his daily rehab with his specialized team, Frieden noted the positive influence that sharing a room with six other patients, a standard at the time, had: “After the lights went off at night, I would say as much occurred just by having the peer support and conversation in that room.”

After two and a half months of intensive and successful rehabilitation, Lex went home and reapplied to college.

“My life was changed at the point the decision was made by myself and my family to engage in a comprehensive medical rehabilitation program rather than just stop the world and go home and live in a hospital.”

Then came another defining moment in his life.

“I was shocked then to discover that I could not even be readmitted to the college because I had indicated on my application that I used a wheelchair for mobility, and that had a profound impact on my life. At that point, I would say I became a disability rights advocate,” Frieden said.

An expected encounter occurred after he was eventually accepted into graduate school at another institution when Dr. Spencer, who become one of Lex’s mentors, invited him to a meeting at TIRR with Congressman Olin Teague.

“The meeting with Teague led me to believe that in fact our representatives in the Congress could relate to some of the issues we had as people with disabilities.”

The Journey

Meeting Congressman Teague quickly led to Lex’s recently-undertaken journey in advocacy being realized, when he was invited to be part of a panel of experts commissioned by a congressional committee that dealt with science and technology. 

Lex traveled around the country discussing how those with disabilities could benefit from the latest technology that was being developed for use in the then booming space program, giving his unique perspective in the process.  

“That also kind of conditioned and reinforced the notion that people with disabilities must be involved in programs that affect their lives, in making decisions about those programs and leading those programs.” 

This panel eventually became the National Institute on Handicapped Research in 1978 and later in 1986 the National Institute on Disability and Rehabilitation Research.

Shortly after, the first step in legislation ensuring equal access for those living with disabilities was taken with the Rehabilitation Act of 1973. However, Title V of the Act, which would have delegated federal funds to be used for public space accessibility, was not implemented.

“Apparently, nobody understood how you could apply non-discrimination laws to people with disabilities. It just was not intuitive,” Frieden said.

In 1976 in protest of the non-inclusion of Title V, people with disabilities blocked the Golden Gate Bridge and organized a sit-in in federal office buildings in San Francisco, shutting some down for weeks. The following year, Lex helped found the Independent Living Research Utilization Program (ILRU) at TIRR Memorial Hermann, of which he currently serves as director.

As part of the same protest, a candlelight vigil was held in Washington, D.C., to urge then Secretary of Health, Education and Welfare Joseph A. Califano Jr. to officially sign Section 504 of the Rehabilitation Act. The protest worked, and the section was signed into law.

Looking now to ensuring equal rights under non-discrimination protections, Frieden took the next step.

In 1983, he gave a testimony before Congress about independent living programs recommended in amendments made in 1978 to the Rehabilitation Act of 1973, which was due soon for reauthorization. A year later, he was appointed director of the National Council on the Handicapped (now the National Council on Disability) by President Ronald Reagan. 

Under his leadership, the council produced two special reports, “Toward Independence” in 1986 and “On the Threshold of Independence” in 1988, which produced information on the legislative needs of people with disabilities in the United States. Congress chose not to move forward with the former, and thus the latter was produced with sample legislation called the “Americans with Disabilities Act” (ADA).

“Apparently, nobody understood how you could apply non-discrimination laws to people with disabilities. It just was not intuitive."

Two weeks after Frieden met with members of the Senate and participated in a televised interview in public support of the ADA, George H.W. Bush was made president, and it was at that moment that Lex was certain his vision was going to made reality.

But in 1990, the year that the ADA was passed, a number of small business owners with financial concerns lobbied against the bill. In response, a historic protest was held in Washington, where people with mobility disabilities abandoned their wheelchairs and dragged themselves up the steps of the Capitol building.

“I thought there aren’t going to be anymore barriers. Members of Congress came out of the Capitol to encourage us and basically said, ‘You all have done what’s needed to prove to the nation we need this bill.’”

The ADA was signed into law on July 26, 1990.

What Comes Next

While the 30th anniversary of the ADA is cause for celebration to commemorate the strides that have been made in securing equal rights for people with disabilities, it is also a time for reflection and review of areas that still need attention.

One such area is employment, where Frieden mentions rates are almost the same as they were 30 years ago.

“It’s very clear to me that employment remains one of the biggest challenges for inclusion of people with disabilities. … While we have changed the physical environment and while we have changed … the attitudinal and social environment, we have not effectively changed the workplace.”

Another central issue that has yet to be resolved is access to affordable housing, about which Frieden said, “People are stuck in places where they don’t belong, simply because there’s no other place to live.” 

Over the years, disability rights advocates made major progress in health care, especially with the Affordable Care Act, but with the change in administrations, this progress has been reversed.

“People’s access to health care has improved until now, and recent action by Congress and by the administration to take away access that was provided under the Affordable Care Act has had a profound impact on many people.” 

Frieden says that since employer-paid insurance can now factor preexisting conditions into their insurance assessments, many are worried that they will lose their coverage and/or compromise their Medicare and Medicaid benefits. 

He also advocates for and is proposing a better community-based infrastructure, where a team can provide services to people with disabilities in their home. In this new model, caregivers and assistants would be on-call and provide support for daily tasks, such as preparing meals and putting on clothes.

Finally, he sees opportunities brought on by the public health emergency for those with disabilities in that remote work has become a viable option for many industries and their employees, in addition to the growth of telehealth offerings.

“I think COVID … may improve opportunities for people with disabilities, as we’ve proved that remote work can effectively be done. ... This may be a silver lining somewhere in this cloud. … I think there are huge opportunities in adapting our clinical approaches to a telemedical modality, and we really need to exert some effort there … and build programs people can use to seek good medical care from rehabilitation programs in telemedicine and remotely.”

Becoming an Advocate

So how can someone like Frieden take the first step on a journey of advocacy?

“People should take initiative, and they should be assertive, and they should expect to be treated equally and not simply resign themselves to a lifestyle that they may have perceived living … but instead be aggressive and attack those barriers.”

Frieden gave numerous recommendations for how to get started, including being in touch with the local mayor’s office, working in campaigns for candidates who have solid platforms on disability issues and participating in centers for independent living.

“People should take initiative, and they should be assertive, and they should expect to be treated equally and not simply resign themselves to a lifestyle that they may have perceived living … but instead be aggressive and attack those barriers.”

Organizations like the United Spinal Association for those with spinal cord injuries and the American Association of People with Disabilities, which Lex helped found, also provide platforms for advocates and offer peer support.

The Power of Medical Rehab

In January of this year, Frieden was again a patient at TIRR Memorial Hermann for rehabilitative care for 10 days after he was intubated and treated in the ICU for pneumonia.

“If I had been discharged from the ICU to my home, it’s very likely that I would not be mobile in the wheelchair right now; I’d still be recovering from the results of the intubation, from the ventilator and from the treatment that I received to get over the pneumonia.”

Frieden went on to explain the power of medical rehabilitation, saying, “When I left there, I felt like I was actually more fit than I was before I had the pneumonia and probably more fit than I had been for three years.”

Given the variety of post-acute care options, making a decision about where to be treated can be difficult, but for Lex, as it was back in 1968, the choice was clear.

“My advice to people who have the option is to choose the elite care that one would get in a comprehensive medical rehabilitation facility.”

Two years ago, Frieden formally accepted the AMRPA National Leadership Excellence Award, he recalled that one of his doctors told him, “You can anything you want to do, as long as you can figure out how to do it on four wheels.”

It goes without saying that Frieden did figure it out, and while his advocacy journey still continues, his life-defining moment back in 1967 came to fruition with the passage of the ADA 30 years ago.

To connect with Lex Frieden and follow along on his ongoing journey, follow him on Twitter and LinkedIn.

For more information on the Americans with Disabilities Act, visit its website.

To learn more about the life-changing care provided by TIRR Memorial Hermann Hospital and talk with someone from their team, go to their website.

Are you an AMRPA member interested in submitting a story? Visit our submissions page to learn more.