for Technical Assistance
Connecting people with disabilities who are facing day-to-day barriers with those who have overcome them.
Peg was born with spinal muscular atrophy. She is the executive director of the Center for Research on Women with Disabilities and a professor of physical medicine and rehabilitation at Baylor College of Medicine. She discusses her life before and after the ADA. She gives advice on requesting reasonable accommodations for work and shares her stories about owning her own home and having live-in attendants on a 24-hour basis.
My background is before and after the ADA. I grew up in the northern part of the U.S. where all of the buildings were old. There was no transportation; it snowed; it was hard to get around. Until I was 25 years old, I lived with my parents. They would take me everywhere and lug me up and down steps in my wheelchair. Our house was inaccessible. My parents would leave my wheelchair outside and carry me to and from my chair. The schools were inaccessible, as well; there were steps, no ramps. We had to pretty much corral people around us to help me.
I just thought that’s what life was about if you had a disability. I would always need to live with my parents. Then, when I was 24, I got a power chair from the Ohio VR agency. I was so liberated by that. I began tooling around suburbs of Cleveland and getting to explore so many places on my own for the first time! My mother would carry me outside to my chair and I would go around and explore places. Sidewalks, though, were inaccessible and I would have to struggle to get to driveways and go from there. I remember my mom and I were walking one day and we noticed some construction workers were putting in a new sidewalk. We went up to them and said, “Why don’t you put a ramp in that sidewalk so I can use it?” That was in the 1960s and we had to go to City Hall to request they authorize the workers to put in the ramps.
Realizing that I had rights as a person with a disability, came in 1977 when I went to the University of Texas in Austin. It was around the time Section 504 was being implemented. The regulations came down in 1978. The universities were gearing up to figure out how to accommodate students with disabilities. UT was very accommodating. I was going to teach music theory at the graduate student level, but the Music Department was on the second floor and there were no elevators. Because of Section 504 (the predecessor of the ADA), the University equipped a first floor classroom for me. They built a blackboard that was away from the wall where I could roll under it; they built shelves at the level where I could reach; and they added a ramp so I could get in the building. This was the first time that someone had ever accommodated me!
I worked hard for the next 12 years with a lot of people, including my mentor, Justin W. Dart, Jr., to help get the ADA passed. When it did pass, I was so excited. This was going to help so many people. It’s when we saw the rapid expansion of accessibility. Those changes were easy to see. It was not so easy to see other kinds of accommodations that weren’t necessarily tangible, such as accommodations for work. That’s where I really had to do some pushing!
When I came to Baylor College of Medicine in 1984 (pre-ADA), it was really a struggle for me. Being a woman, it was difficult to find someone to help me go to the restroom during the day. I needed to be lifted from my chair and helped with adjusting my clothes. I had to monitor what I ate and drank – to make it until I had someone available to meet me. I could do my job in research, but something as basic as getting to the bathroom was difficult. After the ADA passed, which requires employers to provide reasonable accommodations for all needs (not just the essential needs of the job), I asked my supervisor at Baylor to pay someone to come and help me in the bathroom. Without that simple service, it was very difficult for me to do my job. I sent the request to the head of the Department. They offered to pay part of a secretary’s position to help me when I needed help. That was my first accommodation under the ADA. Things have changed over time. My condition is progressive, which means I get weaker over time and my needs change. It has become difficult to work in the office, so I now spend most of my work time at home. I asked for a reasonable accommodation - to do telecommuting - and they met my need by setting up a work computer in my home. The Department has been very flexible. Other logistical things have followed to support me so that I can use my skills and continue to do my work.
I talk a lot to other people with disabilities and they don’t realize they can ask for these things of their employers. If you can’t work without an accommodation ask your employer to provide it. I have even hired people with disabilities here in my office and have had to deal with providing accommodations for them. Some were as simple as a modified desk set up in their office, a modification to a computer, or a certain piece of equipment so they could use a computer better. What goes around comes around!
When I was looking for a job, I was afraid I wouldn’t get one because of my disability. Because of living expenses and needs, income is always a fear. I was lucky that I never received government subsidies so I always had to be self-sufficient; therefore, I didn’t lose benefits by taking a job. Losing benefits creates a lot of fear for a lot of people. I didn’t lose; I only gained when I became employed.
It’s important to have an accurate estimate of your expenses. For example, after I lived in an apartment for four years, I really wanted to buy a house. I thought it would be so cool to own my own home. I never had a clue about what the maintenance costs of a house were; all I thought about was the mortgage costs. Whoa! Property tax!? Those come once a year and are a huge expense! Then the roof leaks! You have to hire somebody to mow the lawn! Houses are an incredible money drain, so get a realistic estimate of what it’s going to cost.
Perla (my main attendant) and her kids have lived with me for 18 years. For many years, I had students as attendants. Usually they were students from other countries. These students usually had a difficult time finding places to live that were affordable. I offered them free room and board and a small salary. They would help with getting me in and out of bed, keeping house, and doing some driving. It worked out well until I started needing to travel and go to meetings during the day. I needed someone more dedicated to me. For students, school was their first priority; I was their second. So, I started looking for someone who would just be working for me. I started paying by the hour, but that was expensive. I looked for people who had low resources–people who didn’t have any family or a place to live and did not speak English. I spoke Spanish, so I would help them, as well. I paid them a salary; gave them room and board; and helped them to get into English classes. These attendants usually didn’t last more than six months to a year.
Somehow, Perla has lasted...She tolerates me, I tolerate her, and we have a good relationship. I helped her get her permanent residency and she went on to get her citizenship papers. This solidified the relationship – each providing support for the other. Then she met a man and lived with him for a while. She still worked for me. She came to work in the daytime and then went home to him. Then she had children. I never knew I had so much love inside me for children, but she helped me learn that out about myself by bringing them with her to work. Her outside relationship didn’t last, so she moved back in with me. We built an addition onto the house so she and the children would have their own space.
Finding a dependable attendant is invaluable. I could never pay Perla what she is worth in money. Offering a stable place with a family atmosphere; including her and her children in activities; celebrating holidays together; making the kids feel like this is their home – these are the things that form a lasting relationship - beyond the hourly salary. She works 10 hours a day. Another lady lives with me, too. She works from 5:00 in the afternoon and stays overnight until the next morning when Perla takes over. Someone else works weekends. For me, it works better to also have backups. If someone needs time off, I can negotiate with the backups. People need private time.
I also pay for Medicare, unemployment taxes, and Social Security (both the employer’s share and the employee’s share). It’s important for people to have Social Security and Medicare—knowing they will have something in retirement. For most, they don’t get that if they clean houses or work as an attendant for other people. Because I do, their job is more valuable to them - it helps make it a lasting relationship. Having a live-in attendant is like being married. It’s a relationship and its hard work. We yell and scream at each other when I’m in a bad mood, but it’s like any other relationship—we have to work it out.
It’s always good not to assume that family and friends are okay with helping you. Allow them the space to say no. If they can’t handle it, accept it. People are helpful in different ways.
For instance, my sister-in-law (my brother’s wife), is not comfortable with anything where she would have to touch me. Even though she is not one of those touching kind of people, she is very generous and helpful in other ways. During a hospital stay, when my lungs collapsed, I had a tracheotomy and was unable to talk to anyone for the first week or two. No one could understand me; not my family; not my doctors; not my nurses. My sister-in-law had studied sign language and lip reading in college. She came from Ohio and stayed with me the whole time, reading my lips and interpreting for me to both doctors and nurses and my family. At that time in my life, when I was at my lowest and it was the most frightening time in my whole existence, she was there for me.
Some people have the fear that they could never deal with a disability if it happened to them. I am the only person in my family with this level of disability, yet my extended family has the attitude that, if they get a bit of arthritis, they are going to have to go into a nursing home. My uncle says, “Oh, Peggy, you’re just such an inspiration. But when I can’t mow my lawn anymore I guess I’m going to be put into a nursing home.” They will not let go of the belief that if you become disabled, you’re done in and are of no value. It gets very tiring to convince them otherwise.
Questions or comments may be sent to Peg by e-mailing the Southwest ADA and referencing ADA StoryTeller client #13-02-001 in the subject line.