Houston disability activist Lex Frieden
For nearly half a century, Houston disability rights activist Lex Frieden has worked to ensure that Americans of all abilities receive equal access to public services. In addition to his role as an advocate, he serves as the director of the Independent Living Research Utilization Program at TIRR Memorial Hermann, professor at The University of Texas Health Science Center at Houston (UTHealth) School of Biomedical Informatics, professor of physical medicine and rehabilitation at UTHealth’s McGovern Medical School and as adjunct professor of physical medicine and rehabilitation at Baylor College of Medicine.
Q | July 26, 2018 marks the 28th anniversary of the Americans with Disabilities Act (ADA). What does it mean to you to have played a leading role in such a monumental piece of legislation?
A | This year, 2018, is 50 years after I graduated from what is now TIRR Memorial Hermann, 40 years after we founded the Independent Living Research Utilization (ILRU) Program at TIRR and 30 years after the Metropolitan Multi-Service Center opened. I’m just thankful. I’m thankful that President Ronald Reagan and the 15 appointed members of the National Council on the Handicapped hired me to be the director of that agency. I’m thankful that I had the opportunity to write the report that asked for the ADA. I’m thankful that I had the chance to write the original draft of the ADA. I’m thankful for the experiences that I had. I don’t feel particularly, personally, responsible for it—I just feel thankful that people with disabilities for generations to come will not be bound by the limits imposed through discrimination.
Q | You have worked for decades to encourage disability awareness in Houston and across the United States. After your injury, what motivated you to activism?
A | Every time you do something, you learn something—or you ought to. Every time you learn something, you ought to find a way to apply that knowledge. I happened to have opportunities to apply what I learned and I seized those opportunities.
Q | In 1968, an automobile accident in Oklahoma left you paralyzed from the neck down. How did you find your way to TIRR and what was your rehabilitation experience?
A | My dad visited the Rusk Institute of Rehabilitation Medicine in New York, the Rehabilitation Institute of Chicago and TIRR [which stood for Texas Institute of Rehabilitation and Research at that time] in Houston while I was at the hospital in Oklahoma City. He came back from the last visit at TIRR and he said: ‘There’s no question. We should go to TIRR.’ Two weeks later, I was in a medical airlift from Oklahoma City to Houston to TIRR, and I spent the next three months in what I would call a boot camp. Every morning, I was getting up and doing exercises. One thing that was different about rehab then compared to now is that we used to have wards, so there were five other patients in the room with me and, at night, there was a lot of mutually supportive social interaction that went on. We talked about coping with our disabilities. We talked about how we got hurt. We talked about being stupid kids. We asked the older guys: ‘Does life get better?’ I’ll never forget the kind of interchange that went on and the kinds of things we collectively thought about and dreamed about.
Q | When you left TIRR, what helped you adjust to living with a disability?
A | Years before I got hurt, I liked amateur radio. After I became disabled, it seemed natural to take up the hobby again. The radio was therapeutic in some respects because I could get on and nobody would see me. They didn’t know I had a disability. We didn’t have to talk about that. While my friends were outside playing basketball and everything, I had something to do and I was enjoying myself. It was giving me a sense of well-being.
One day on the radio, I heard this deep voice call back to me. He had a British voice and his call sign was unique—it was JY1. I knew JY meant Jordan and the No. 1 must be the first person licensed in Jordan. Can this be the King of Jordan? And it was. I kind of had this catharsis and I said: ‘Here I am, sitting in my little room in Tulsa, Oklahoma, and my friends are outside playing. I always thought it was so cool that they could be outside playing and I felt bad for myself, but here I am talking to the King of Jordan.’ I told him thank you and that he made my day, but he told me: ‘Lex, I can’t go outside either. There’s a war going on outside.’ He told me it’s not all about where you are or who you’re talking to at any given time. It’s about what you think about yourself, whether you think you are doing the right thing and whether you’re doing the best you can despite all of the odds against you. I remembered that lesson all my life and that sort of brought me out of my depression.
Q | Was there a singular event that inspired your advocacy work?
A | After I was at TIRR, I went back to Oklahoma and applied to Oral Roberts University. I was turned down because I had a disability. I’m thankful for that experience. That taught me what discrimination was about. People were being told—some on the basis of race, some on the basis of gender—that they couldn’t do things that they knew they could just because of a characteristic over which they had no control. That’s what happened to me. They had sidewalks, doorways and ramps.
Why couldn’t I go to college there? Well, because they didn’t want me there. Simple as that. My friend, who graduated from the University of Tulsa, said: ‘You ought to go out there and talk to the admissions people.’ I said, ‘I don’t see the point; they don’t have a single building that is accessible.’ I met the dean of admissions for the University of Tulsa in the parking lot because I couldn’t get up the steps of the building and into his office. He said to me: ‘See the building across the campus there? That’s the first building we have built in about 15 years. It will be ready for the fall semester. It’s got a level entrance and an elevator in it.’ I asked him what they taught there and he said, ‘Biology.’ I said, ‘Sorry, that’s not my deal.’ He said, ‘Wait a minute. Take the catalogue, tell me what you want to take and those classes will be in that building.’ It was such a simple solution and that experience was actually incorporated into the plans we made for the ADA. The ADA says you don’t have to rebuild your building, but you have to find relatively inexpensive, simple ways to do things if you can.
Q | What was your first taste of advocacy work?
A | In 1978, we proposed that the city’s transit system, HouTran, should be accessible by people who use wheelchairs, by people who use baby carriages and by people who are older and have difficulty walking. At that time, no transit system in the country had those kinds of facilities. The mayor at the time, James Fred Hofheinz, wanted the transit system to be better used, so he offered free rides all day on Saturday to encourage people to try public transit. So, we got about 40 people in wheelchairs to go down to City Hall, where he was going to ride the bus, and line up with him to have our free bus rides. Of course, the bus came, and we were all waiting to get on. Some of our colleagues got out of their wheelchairs and got down on the ground and started dragging themselves up the stairs of the bus. The press was just having a field day. That was kind of our first public advocacy action to bring attention to the need for accommodations for people with disabilities.
Q | How did you find your way back to Houston?
A | I met a professor while I was at TIRR who taught at the University of Houston and I wrote and asked him if they had a graduate school program I would be able to participate in. He invited me to come there and also told me about a program that TIRR was starting that would provide housing for former patients and support services—attendant care. It was set up to be a community living arrangement where the residents managed their own facility. Logic pointed to Houston and I came here in 1972. Living in that place with other people who shared the same experiences is where we began to talk about how to change the world. What do we need to be full participants? Obviously, access, transportation and recreation.
Q | How did you meet your wife, Joyce?
A | She had been a patient at TIRR and she was going to the University of Houston, where I was. At the time, I was putting together the bylaws for the Houston Coalition for Barrier Free Living and I needed somebody to type. I couldn’t type fast enough. I saw this woman in a wheelchair, kind of attractive, in the hall one day and I asked her if she could help me type. She came to my house and helped me type that stuff up. Then we got a rain—a Houston rain—and I told her: ‘You can’t leave here. You’ll drown trying to get home. I’ll stay up all night and you can lay in the bed.’ She said: ‘No, I can’t get in your bathroom.’ I had never widened the doorway, but my neighbor came over and knocked that wall down. Joyce stayed that night. We’ve been married for 40 years now. I’m glad to have a wife and a daughter and grandson and a soon-to-be granddaughter-in-law.
Q | We are sitting in Houston’s Metropolitan Multi-Service Center, an adaptive sports and recreational facility for people with disabilities. How was this space created and what does the center mean to you?
A | This center was conceived by a group of former TIRR patients in 1978. I went with my wife, Joyce, on television—the KHOU Channel 11 morning show—and introduced this idea that Houston should be the most accessible city in the world. People would come from all over the world to TIRR, and why shouldn’t the city complement the medical center? We thought there should be a place where people with disabilities could go and meet and exercise and play basketball and swim and enjoy. There wasn’t any place. There were no parks in Houston with accessible playgrounds, there were no swimming pools that had ramps in them and no basketball courts reserved for wheelchair basketball players. It was a novel idea. It took 10 years to get this thing built, then it became a national symbol. It was the first time that federal dollars had been used with city dollars to build a fully accessible center for people with disabilities. Because of that, members of Congress, when they were having hearings prior to the ADA, came to Houston and sat in that big auditorium to hear testimony from people with disabilities and public officials about the prospective law. Some said this was going to cost cities and schools a lot of money to make everything accessible and the Houston leadership said they should do it anyway. It was significant because, at that point, the ADA was not a foregone conclusion.
Q | What are some of the challenges Houston continues to face in serving people with disabilities?
A | Right now, we have huge opportunities in Houston because of Mayor Sylvester Turner and the City Council. Metro now has a plan to make all 9,000 transit stops accessible to people with disabilities, but that plan has a bad wrinkle: Before you can use the transit stop, you have to be able to get there. The city doesn’t have sidewalks all over because there is a city ordinance that says the sidewalks have to be maintained by each property owner. When property owners choose not to make their sidewalks accessible or choose not to connect them to the Metro stop, we have a problem. This is an opportunity. I’m not sure what the solution will be, but there has to be a solution. It’s silly for us to have this investment in the infrastructure, all the buses accessible and all the stops accessible and, yet, some people can’t get down the sidewalk to get to the stop.
Q | Have there been any other defining moments in your advocacy work?
A | In January of 1986, I met with then-Vice President George H.W. Bush about the ADA. He supported what we were doing, but reminded me that he was just the vice president and as soon as he had the chance to do more, he would. Two years after that, he was elected president and in 1990, he signed the ADA. A couple of years ago, he had a meeting in downtown Houston and he was in a wheelchair at this point. They couldn’t park near the building because of construction. They got him out, pushed him down the street, down the curb, across the street, down the ramp and down the next block. After that, he said to me: ‘Am I really responsible for making those ramps on the sidewalk?’ I said: ‘Yes, sir, you are. You signed the law.’ He said: ‘That worked out pretty well, didn’t it?’
Lex Frieden was interviewed by Pulse staff writer Britni R. McAshan. The conversation was edited for clarity and length.