I am a disability rights attorney who is well-versed in special education and disability law, and I am quite familiar with universal design. Our daughter Pazya, now 25, has lissencephaly, a rare brain disorder resulting in profound cognitive and physical disabilities. She is completely dependent for all aspects of her care and uses a wheelchair for mobility.
When she was young, we lived in a traditional colonial-style house with bedrooms on the second floor. When I tripped while carrying her down the stairs when she was six or seven, we realized that it was time to look for a more accessible house. We looked at many houses, including ranchers, which are ostensibly accessible because they are all one level, but a remarkable number of them had steps to get into the house or steps within the house. We finally found an unusually designed multi-level house with two bedrooms on the first floor, which we gave to Paz and our other daughter. The house was built in 1950 when nobody was thinking about universal design. We built a ramp along our garage and did some other work to make the house more accessible, and then a few years ago renovated our kitchen. In fact, our contractor won a prestigious award for the renovation, in part because of the accessibility features he included; our center island has an overhang that allows us to wheel Paz up to the island to sit with us, and the wood underneath has a plexiglass shield to protect it if the wheelchair bangs against it. Although we have made the first floor of our home very accessible to Paz, the basement and second floor are not, so much of our life is centered in her room and the kitchen when we are all home.
Because it is not possible to install a ceiling lift to transport Paz into and out of her bathroom, we are reliant on a mobile bath chair. There are only a couple of people who are able to manage bathing her. We have made our house work for us, but given Paz’s age and weight, we find it difficult to travel with her because of the lack of suitable changing areas for diaper changes for someone of her size.
Also, we live in a city where many buildings and homes are old, and there are stairs everywhere. When Paz’s sister, now in college, was young, lack of accessible changing facilities and lack of places in museums or other places where we could get Paz out of her chair for a rest made it difficult for us to do activities together as a family, and we often split ourselves with one parent staying with Paz and the other taking Rebecca out. I remember feeling very stressed and frustrated about this. It’s one of the reasons why I have such wonderful memories of our Make A Wish trip to Orlando; for one week, everything was accessible to Paz, and she and Rebecca were able to participate in activities together.