Postcards from My Wheelchair: 2024 Q1

Maureen Gaynor

Well, it is another new year. Sometimes we, as designers of structures, may want to sit back and contemplate how we can design a little bit differently. Thirty years out of college, life brings us knowledge from experiences we have seen firsthand. My experiences are a little different than most because I have been a wheelchair user my entire life. As a child, you do not consider things like if doorways are wide enough, you do not consider if ramps, if they existed, are at the right slope ratio, and you do not consider if towel racks have the proper blocking inside walls to be used as a grab bar. Many children with developmental disabilities are carried around by their parents until they grow, and it becomes more difficult carrying and managing the care of teens with developmental disabilities in homes that are not designed for accessibility.

“It is not very common that architects find themselves designing homes for people who have a disability”

I grew up in the 70’s and 80’s, well before the signing of the Americans with Disabilities Act (ADA) on July 26, 1990. When my parents put an addition onto their house for my grandmother, a little foresight was used to design the new bathroom so I could use it too. My father continued to carry me upstairs to bathe me. My grandmother was ambulatory to get into a 36” by 36” shower stall. I have athetoid cerebral palsy, so even as a child, getting me into that particular shower stall would have been nearly impossible. I also remember my parents applying to the State of Rhode Island for financial assistance to put a ramp onto our house. The state would have helped my parents, although with the regulations and the use of aluminum, the ramp would have extended well into the driveway, blocking our unattached garage, and creating an ugly eyesore in our neighborhood signaling a person with a mobility impairment lived in the house. My parents decided to go rogue and had their own ramp built out of wood. It was a switchback ramp, a little narrow and steep, but by this time, I had a power wheelchair, and it was very manageable.

I also went to school at a residential facility up in Greenfield, New Hampshire, so the entire campus was wheelchair accessible; it had to be. I had the freedom to go wherever I wanted to go. The campus had ramps galore! Every bathroom had grab bars and accessible sinks. This is where I found my independence. Being independent is totally different for each person with a disability because disabilities can vary from severe to mild. People who have severe disabilities often rely on caregivers to assist them with getting out of bed, dressing, toileting, eating, and most activities of daily living. Others may not require assistance at all and still be a wheelchair user. This is where having 36-inch-wide doorways becomes critical. If you have a 28-inch-wide bathroom door, chances are that a wheelchair user will not be able to access the bathroom. We all know how critical bathrooms are. If I go over to someone’s home and can get inside, chances are I will not be able to access the bathroom. Sometimes I am pleasantly surprised when I go to a family member’s home, and I can actually fit into a bathroom. This doesn’t happen too often.

I also recall having medical appointments in buildings that were not wheelchair accessible, one provided orthopedic services. This seemed very strange to me for the obvious reasons. I also had to visit my orthodontist once a month for three years. The orthodontist’s office essentially was a small ranch house with only one step up. Even if somebody had the brilliant idea to build a small ramp, I do not think my power wheelchair would have made it through the main entrance. At every visit, my wheelchair remained outside while I had to be carried inside. No one really gave wheelchair accessibility a second thought back in those days. People with disabilities learned to adapt, instead of the building being adapted to serve people with all abilities. Things have gotten much better, but we need to go further, even if the obstacle is a simple step.

In 2017, my late sister was diagnosed with cancer. She had to endure multiple rounds of chemotherapy, a few surgeries, and a short period of radiation. She had a two-story home with bedrooms on the second floor. Her house was not conducive to setting up a bedroom on the main floor even if there was a full bath. Many times, my sister just inhabited the second floor until her next appointment. This is where we, as architects and designers, can develop floor plans that might be more ‘malleable’ than the average home.

“People with disabilities learned to adapt, instead of the building being adapted to serve people with all abilities.”

The fact is it is not very common that architects find themselves designing homes for people who have a disability, so we do not have proper experience to design homes for people of all abilities. Let us face the facts that as we age, activities become more difficult, such as climbing stairs and taking a bath. Why not design homes with the foresight that a family member might need an accessible shower in the future? Why not have this bathroom attached to a flex room on the first floor that could be easily converted into a bedroom? Designing homes like this can alleviate a lot of stress if a serious injury or an illness occurs. Designing a home in this manner can save homeowners financially by not having to put an addition onto their homes. This method of preparing homes for accessibility for the future is called Livable Design, a concept conceived by architect, Jeffrey DeMure, AIA, following a motorcycle accident that left him with fifteen broken bones when he was 22. Having that experience changed his perspective on design.

In the following year, I will be writing on Livable Design and its concepts.

Maureen Gaynor lives in Greenville, Rhode Island. Born with athetoid cerebral palsy, she graduated from Roger Williams University, majoring in architectural studies. With limited fine motor control in her hands, Maureen uses a headpointer to type. In 2015, she received the prestigious Courage of Conscience Award from The Peace Abbey in Millis, Massachusetts for her strong advocacy work for people with developmental disabilities. In her spare time, Maureen loves to compose music—a lifelong passion. Maureen is the 2022 recipient of the AIAri Archistar.