Susan Sivola's story helps us understand who to include in "design that's usable by all people."

And not just in Aplington, IA, but anywhere.

Story

I had been a physical therapist for 17 years when my daughter was diagnosed at the age of 5 months with a brain malformation that would cause her to be severely physically disabled. Having seen, as a PT, the challenges people faced when returning home after an event that left them physically disabled for even a short period of time, I knew that our 2 story old farmhouse would not become easily wheelchair accessible. That was the beginning of my ‘next house’ folder; I clipped house plans and sketched out floor plans and when our daughter was 8 and we built an accessible house.

I like big old houses and never wanted a rectangle (ranch) so we have a T with a bit of character in the way of a porch. Hallways and doorways are wider; we had a corner in the hall that leads to my daughter’s room angled as I knew, even with wider hallways, that we would clip that corner with her wheelchair on a regular basis. All of our entrances/exits are ramped including the deck. The stairway to the basement is also wider so it is easier/safer to carry her downstairs in the event of a tornado warning (we live in Iowa, and yes we’ve had to go to the basement more than once).

When my husband was diagnosed with cancer that eventually progressed to a spinal cord tumor and paraplegia, our accessible home made his needing a wheelchair the easy part of his condition. He could get in/out of the house easily; the bathroom including toilet and tub were easily accessible to him; he could move about the house without difficulty with plenty of space for his wheelchair. While we built our house for ease of our daughter’s mobility, it became invaluable after my husband’s diagnosis. At a time when we were dealing with a devastating diagnosis, we didn’t even have to think about how he was going to be able to live in our home. Unplanned events – diagnosis, accident, surgeries – happen all the time. Universal design takes a huge bit of stress out of the equation which, for us, allowed us to direct our energy and resources elsewhere.

Housing and Health

My daughter and I live on 4 acres literally in the middle of beautiful Iowa farm fields. With my husband gone and my son on his own, it is too big for us and too big for me to take care of. I will have no trouble selling this property because of location (yes, there really are people who enjoy living in the middle of a cornfield!) I believe whomever buys it, if not right away, will eventually be glad it is of universal design. I know they will appreciate the ramps when they move furniture in.

The challenge for us becomes, where do we go? We require an accessible place to live. I can still carry my 80 pound, 22 year old daughter, but over time that may take its toll and it becomes a safety concern for both of us. Will I have to carry her in/out of her bedroom or will her wheelchair fit down the hallway and through her door? What about the bathroom (the bigger challenge)? How much work will have to be done to make a house accessible? How will that affect our move timeline? I have to sell a house in order to be able to buy another. What if we need to rent in between? What might that look like? While living temporarily with a friend or relative may be an option for some, very few people live in accessible homes which limits our option to do so. Accessibility is about more than just being able to get in, interior space has to be usable. Any move can be stressful, we have so many things to consider it makes my head spin at times (and it’s probably why we are still on the acreage). Being on our current property is overwhelming at times; the thought of trying to find an accessible place to move to can also be overwhelming. Lack of accessible housing, for us, definitely impacts our safety and stress level.

Location: Aplington, IA, United States