Contagious Conversations / Episode 2: Infrastructure, Inclusivity and the ADA
Transforming the lives of Americans living with disabilities
Dr. Lex Frieden, disability rights activist and architect of the Americans with Disabilities Act, shares his personal story and his passion for independent living by people with disabilities.
Below: “The first time former President George H.W. Bush invited us to Kennebunkport, he realized the day before our visit that he didn’t have a ramp leading to the house for those of us in wheelchairs—so he actually built a new ramp for us that morning.”
Transcript
Claire Stinson: Hello, and welcome to Contagious Conversations. I'm your host, Claire Stinson. Every episode, we'll hear from inspiring leaders and innovators who make the world healthier and safer for us all. Contagious Conversations is brought to you by the CDC Foundation, an independent nonprofit that builds partnerships to help the Centers for Disease Control and Prevention save and improve more lives.
Joining me on the phone today is Dr. Lex Frieden, a professor of biomedical informatics and rehabilitation at the University of Texas Health Science Center at Houston. Lex also directs the Independent Living Research Utilization Program at TIRR Memorial Hermann in Houston. Lex is known as an architect of The Americans with Disabilities Act of 1990 and a catalyst in the worldwide disabilities rights and independent living movements.
In this episode, Lex shares his personal story, his passion for independent living by people with disabilities, and his memories about working closely with former President George H.W. Bush. Lex is also the recipient of the 2017 Fries Prize for Improving Health. Welcome, Lex!
Dr. Lex Frieden: Claire, thank you for having me today. I'm glad to be here.
Claire Stinson: We're excited to talk to you today. For starters, Lex, tell us about your life story. How did you become a champion for people living with disabilities?
Dr. Lex Frieden: Well, you used the word champion, and it's hard for me to think of myself in those terms. I mean, I was a regular kid. Grew up in Northwestern Oklahoma and decided to go on to college as most of my classmates did. I was interested in studying electrical engineering as my uncle had been an engineer at a television station, and I thought that technology was really cool. A few weeks after I started school, I was in a car accident with a number of other students. We had a head-on collision, two carloads of students. Everyone in the cars had been drinking, including the driver, and my neck was broken. I was not aware of the implications of that at the time, but I did have the good fortune to be treated quickly in Oklahoma City and then transferred to TIRR hospital in Houston where I received medical rehabilitation.
That was a good experience for me because when I left there a few months later the doctor said to me, "Lex, you're probably not going to walk again. You'll use a wheelchair, but you can do anything that you might have done before the accident if you can figure out how to do it on four wheels." At the time that didn't seem intimidating to me because in 1968 we had astronauts circling the moon ready for a landing, and I thought, “If that's our future, then wheelchairs shouldn’t provide many barriers for me.” I was eager to go back to college.
Then the surprises began to hit, because when I applied for college my admission was turned down by the university because I used a wheelchair. That kind of threw me for a loop, Claire. It probably would anybody.
Claire Stinson: Yes, absolutely. Would you say that was a defining moment in your pathway?
Dr. Lex Frieden: I'm sure it was, because after that I had a hard time regrouping. Fortunately there was another university in the city, Tulsa University, and I applied to go there and they welcomed me. I was concerned because there weren't any wheelchair accessible buildings on that campus as there had been on the campus of Oral Roberts University, but the Dean there, whom I met with, said, “There's a new building coming this fall and if you'll tell us what courses you want to take we'll put them in that building,” which made a lot of sense for me. They didn't have to build ramps to every building for me; they just had to put me and the courses in the same building where we fit together.
That, again, was kind of a life lesson that I have retained about how one can solve problems sometimes more simply than they might seem at first.
I really took it upon myself, given those experiences, to find out whether people around the world, around my state, around my community were affected by disability the same way that I was. That has given me the opportunity to learn a lot, to contribute I think to the body of law that we have regarding the rights of people with disabilities, and to continue to look for new pathways to problem solving in America.
Claire Stinson: That's a really powerful story, and thank you so much for sharing that with us. We understand you had a special relationship with George H.W. Bush, especially related to your work as an architect of the Americans with Disabilities Act. Can you tell us a little bit about that?
Dr. Lex Frieden: Just briefly, I spent a lot of time after I graduated from college working with groups trying to organize disability advocacy groups, speaking before public assemblies, including congressional hearings. At one point in the early 80s, President Reagan invited me to be the executive director of the National Council on the Handicapped, now called the National Council on Disability. It gave me the opportunity to work with a group of presidentially-appointed people who understood disability because they had family members with disabilities, or they worked in the disability field, or they themselves had disabilities. Together with that group and the staff that we had, a remarkable staff of young people, we made a report for the President about the needs of people with disabilities in the United States. The first recommendation in that report was that there should be a law protecting people with disabilities from discrimination.
In 1986, the report was completed in January and we had scheduled a meeting with the President to present this report, believing that he would welcome the report and want to have immediately a press conference on the White House lawn to discuss the goals of America to have a law preventing discrimination on the basis of disability. That didn't happen, because on the morning the appointment was scheduled the space ship Challenger blew up on take-off and it was a sad day for all of us as Americans and our meeting was rescheduled, only this time with the Vice President.
Vice President Bush welcomed us (this was a few days after the disaster) to his office in the White House and we discussed this report. Interestingly enough, the Vice President had told us that he had read the report the night before with Barbara and that they identified with our first recommendation because they had a child with a disability who had died early on and they had another child, one of their boys, who had a learning disability or difficulty reading. They understood how the system sometimes did not accommodate people with different characteristics, including disabilities.
So the Vice President said before we left that meeting that he would report to the President and that he was himself very interested in our proposal. Not only that one but the other ones in our report. He said that he would do what he could do as Vice President and if he had more opportunity in the future to help us, he would. Two years later he was elected President, and two years after that he signed the Americans with Disabilities Act. That first meeting with him was a real seminal moment because it was clear from the beginning that he had a heartfelt interest in our interest and that he understood clearly from his own personal experience and that of his family.
He told us about an uncle whom he had that had a disability, and so he understood disability in a way that some people don't and that was important because throughout the ADA battle he was a champion. Every turn when there was a choice to be made about whether to be more or less aggressive in terms of establishing these rights, he was right there with us. So, I do consider him to be a dear friend and I'm sorry we lost him, and he'll forever be remembered by people with disabilities as the Abraham Lincoln of the disability movement.
Claire Stinson: What an incredible friend and ally to have. Did you maintain a relationship with him through the years?
Dr. Lex Frieden: Yes, of course. He invited my family and I to go to the movies just a few years ago. We went to the local theater in Houston with he and his family and some other close friends. We would have kind of an annual celebration around the time of the anniversary of the ADA, and he even created an award called the Bush Medal for Disability Rights that he gave to a number of people in the course of his life. We had some intriguing moments and some nice times. The first time he ever invited us to Kennebunkport to visit their home there he realized, I think, the day before, that he didn't have a ramp to the house for those of us in wheelchairs to come in. So, he built a ramp the morning that we visited the home there in Kennebunkport.
Claire Stinson: He really did? That's awesome. I'm sure you'll never forget that.
Dr. Lex Frieden: No, no. None of those memories will ever go away. That whole episode, beginning with the proposal to have an Americans with Disabilities Act through the work that we did to get the bill passed, the passage by the Congress, the signing ceremony on July 26, 1990. Anyone who was involved in that will remember it always. The signing ceremony on the lawn of the White House was the largest signing ceremony ever up until that date. There were 3,000 some odd people on the White House lawn when the President said, "The walls of exclusion should come tumbling down.” It was brilliant.
Claire Stinson: Wow. Well, thank you for sharing that with us and sharing your memories of the President. So Lex, a number of our listeners may not remember life before the ADA. Can you share some of the challenges that existed for people living with disabilities before the Act was passed?
Dr. Lex Frieden: Well, I mean remember that was 35, 40 years or more ago, it's almost like the Stone Age. I have thought about that question before and casually answered it and then thought, "You know, young people when they think about what happened in the 1970s are equivalent to me thinking about what happened in the 1930s." I mean, it is a long, long time ago. Many things have changed, thank goodness. Some of them as a result of the law and some of them just as a result of progress, but about the time that we started working on the ADA we had no idea there would be an Internet, for example. We did have computers that began to replace typewriters, but nobody ever thought about a worldwide network for communications at that time.
The things that we dealt with were businesses that could discriminate freely, people would go to apply for jobs and the employer would say, "No, you're not eligible, you are disabled," and they just have an outright prohibition against hiring people who were obese, or people who had any kind of health condition. It doesn't make sense now, it's hard to believe but that's the way life was. Restaurants weren't required to have ramps, neither were motels or hotels, movie theaters didn't have any accommodations whatsoever. If you wanted to watch television and you were deaf, there were no captions. Life was a lot different.
When we went down the streets, many streets didn't have ramps on them as they do now, and you'd roll in the street, not on the sidewalk, and you would try to find a driveway to get up. If you tried to get into a building, the most likely route would be through the loading dock because there was typically a ramp there for the carts, and you'd roll up the ramp and use the freight elevator to get to the floor you were going to. This is not only visitors, these are people who sometimes worked in those buildings. So, life was much, much different before July 26, 1990. After that almost immediately every transit system in the country put lifts on their buses, the law required that and they did it. Some of the changes occurred quite rapidly. But the thing about that question, Claire, that frustrates me a little bit is the things that have not changed since the ADA. The backward steps that we have taken since that time, and some of the progress that should have been made that hasn't.
There are still millions of people with health conditions and disabilities who want to get jobs and they can't get them because employers, not now overtly discriminating, but I think perhaps their attitudes affect the way they make hiring decisions and they just make these assumptions that somebody, because they have a certain health condition or characteristic, cannot do a job. Yet people are very qualified or they wouldn't be applying for these jobs, and we need them in the workforce. So, as things have improved dramatically, we still have a ways to go.
Claire Stinson: I'm glad that it's hard to imagine life before the ADA, though, and we have you to thank for that. So thank you for everything that you've done.
Dr. Lex Frieden: No, I appreciate that and, again, I can't take singular credit for that. I mean the disability movement, 36 million people with disabilities at the time, each one of those people presumably had two parents or at least two close friends who understood and supported them. You've got 100 million people in the United States in 1990 who probably would have stood up to say, “Pass this bill.” So, Congress had to pay attention to it. There were many organizers besides myself, some of them still living, who worked very, very hard to see the passage of that bill. That's not to mention the members of Congress who changed their agendas in order to support the Americans with Disabilities Act. So, it was not a singular act, there were many people involved and I have to pay tribute to my colleague Bob Burgdorf who was an attorney in the council with me working and who literally helped to draft the first draft of the Americans with Disabilities Act. Without all these people there would be no ADA.
Claire Stinson: Absolutely. We'll be right back with Dr. Lex Frieden.
Since this is a show about contagious conversations, we want to hear from you. Each episode we'll ask you a question, and this episode’s question is, “Do you have a story to share about how the ADA has benefited you or someone you know?” Just go to cdcfoundation.org/conversations and click on the email icon to answer. That's cdcfoundation.org/conversations. And if you share your thoughts with us, you'll be eligible to win Contagious Conversations merchandise.
Now, back to our conversation with Lex.
Can I ask you, what is the one thing from the ADA that you consider the most important component?
Dr. Lex Frieden: I think the principle of the ADA is the most important component. The ADA changed the paradigm from thinking about people with disabilities as those who have diagnoses, we got away from the medical model, and I think this is the profound lesson that we have to teach and that we learned from the ADA. People may have functional impairments, it may be difficult for me to climb steps because I use a wheelchair, but it doesn't mean that I can't get to the top of the steps if I use a ramp, an alternative. So, therefore, it's not my disability, it's not my spinal cord injury, that prevents me from getting to the top of those steps, it is the environment. If the environment were built properly, if the environment... and furthermore, it's the social environment.
If people would accept the fact that mental illness is a part of our society, that there are a number of people in the population who as a result of genetic background or other disease, may have mental abnormalities. We have to accept that's part of life, it's part of our society, and we need to accommodate people with every type of physical or mental condition. Anybody with a sensory impairment. I mentioned the captioning on the television. Deaf people were asking for captioning well before the ADA was passed, and now that we have captioning on the television it's hard to walk into a restaurant with a television that you don't see captioning, and when you don't you wonder where it is. Everybody uses that. Everybody uses the ramps on the curb. And everybody will benefit from engaging all people, regardless of their characteristic. This is how the disability movement sort of merges with the movement for racial equality and gender equality.
Discrimination is based on misunderstanding, it's based on lack of knowledge and it also is based on hatred. I think that we can alter that, and I think the ADA was a part of that. Thinking of people with different characteristics is healthy for us, and without people of different characteristics we wouldn't have a beautiful world that we do, and we wouldn't have nearly as much progress as we've made. We have to do everything we can to be inclusive in our planning for the workplace, in our planning for the community, and our planning for the world. It needs to be an inclusive world and then people don't feel left out, and they don't feel resentful, and they're likely to be contributors.
Claire Stinson: Thank you for so eloquently answering that question. To follow up on our discussion of how the ADA has transformed life for Americans with Disabilities, do you think there is a role for public-private partnerships to improve the lives of people living with disabilities?
Dr. Lex Frieden: Well it's the only way we're going to get anything done. The private sector can move quickly when they need to get things done or when they have a desire to do that, provided that they have an economic basis. In order to have an economic basis you've got to have a fair playing field that's workable, and that's partly the governments' responsibility. The public-private partnerships get a lot done, and they get them done quickly in terms of changing our communities, in terms of improving the quality of our lives, we can't depend on one sector or another. That's the beauty of America.
We have a society where we're not expecting the government to do everything, and by the same token we don't depend on the private sector to manage and maintain all the infrastructure. So together we can achieve a lot and people who are working on plans to improve their communities need to engage all sectors, including the public sector in solving these problems. I think empowerment, really the empowerment of individuals to be engaged in these projects and to work jointly with the public and private sector, is very important, and I think that's why we need to encourage communities to reach out more and partner with the citizens and why the private sector shouldn't just go off and do something independently in the views of the community.
Any kind of forward planning or progress that we make will be dependent, in this country at least, on collaboration, and that certainly relates to solving problems that people with disabilities face every day.
Claire Stinson: We're a big fan of public-private partnerships here at the CDC Foundation, so we're really happy to hear that. So Lex, looking ahead especially in light of so many baby boomers aging currently, what are some of the challenges you see for Americans living with disabilities, or the growing number of people who will be living with disabilities?
Dr. Lex Frieden: That's a thoughtful question, Claire. You hit the proverbial nail on the head when you said baby boomers, that's a key word here. Between 1946 and 1964, 76 million people were born in the United States. All of those people, like me, are becoming older and we're retirement age, and people who are aging will naturally acquire disabilities. Not everybody will acquire the same disability, and not everybody's disability will be as profound or severe as the next person's, but people with age lose hearing acuity, they lose visual acuity, they lose memory acuity. People simply age and they age at different rates and by the year 2021, half of those 76 million people will have some kind of impairment, some kind of disability. That will have a profound effect on our infrastructure, particularly our health care infrastructure.
We do not now have the means to accommodate all the people who will become physically disabled or who will need assistance because of memory loss or intellectual disability. We don't have the means to accommodate them in their homes and the community. We don't have an infrastructure of community-based support that is resilient enough, that is strong enough to support all these people in the community. We hardly have the infrastructure now, and that is a challenge that all of us face. We face it for ourselves, our children face it for us, and our grandchildren will face it in the future. We've got to build a stronger community-based culture of social service and health service programs. That is the biggest challenge I think we face in America right now.
Claire Stinson: Well said, and an important point. Thank you so much for sharing your story with us in general. You've had a profound influence on society, and lead an incredible life. What advice do you give to others living with disabilities and to their families, friends, and colleagues as well?
Dr. Lex Frieden: I think people are motivated by life experiences and I think sometimes people tend to moderate their enthusiasm over their life experiences. I think we should, anybody, people with and without disabilities, will enjoy life more if you realize these experiences can motivate one to make positive change for themselves, their own families, and for others. I think people need to be engaged in the social discourse, I think people need not to be frustrated by their disagreement with others but to be engaged in conversation and in social action that is intended to improve society for everyone else.
And I think every time we hit a frustrating barrier, every time we hit a bump in the road, we shouldn't be stopped by that, but we should be motivated to figure out what happened, why it happened, and how we can fix it and how we can make it better for ourselves and for others. That certainly motivated me when they said I couldn't go to college because I had a disability, and it motivated everyone else who worked in the disability movement because we could see we weren't the only ones affected by that problem. I think that's generally true with issues that people face in their daily lives, that is we don't need to personalize these things, they're not just us, we're not the only ones frustrated by some of these issues. If we work together we can resolve them and we can make our lives better and we can be happier and our families can be better off as a result of that.
So, I think appreciate life and understand that our personal experiences can be very motivating and we need to motivate ourselves to find ways that we can contribute and be rewarded by that, just the notion that we are contributing to improving the life and the world for everybody else as well as ourselves. I think the ADA affected not only the lives of people with disabilities but everybody's life, and I think that legislation changed our infrastructure but it also changed the way we look at disability and health issues. Again, before the ADA, people with disabilities were seen as different, they're not a part of society and we were segregated, sometimes because we were simply not able to negotiate the environment. But today people should be able to negotiate the environment and if they're not they should file a complaint under the Americans with Disabilities Act. We will continue to make progress particularly in the area of employment. I think more people need to understand that regardless of what you're able to contribute, you can be able in the workplace, and that employers should understand people with disabilities can achieve anything anyone else can achieve, particularly if they're appropriately accommodated.
Claire Stinson: Really important words of advice. Lex, I have so enjoyed talking to you today. You are such an inspiration, and I know you will inspire our listeners. Thank you for being with us today.
Dr. Lex Frieden: Thank you so much for having me.
Claire Stinson: To explore bonus content from today's episode, including a photo of Lex with the Bush family at their home in Kennebunkport, Maine, and video of Lex receiving the Fries Prize for Improving Health, go to cdcfoundation.org/conversations.
Thanks for listening to Contagious Conversations, produced by the CDC Foundation and available wherever you get your podcasts. Be sure to visit cdcfoundation.org/conversations for show notes and bonus content. If you like what you just heard, please pass it along to your colleagues and friends, rate the show, leave a review, and tell others. It helps us get the word out. Thanks again for tuning in and join us next time for another episode of Contagious Conversations.
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All photos courtesy Lex Frieden