Addressing home accessibility concerns are different when you’re born with a disability versus acquiring one later in life. I certainly didn’t expect becoming paralyzed, wheelchair-bound and ventilator dependent at the age of 16 years old. Although sometimes life gives you obstacles and you have to learn to overcome or deal with them in whatever way possible. For myself and my family, this meant changing our lifestyle in order to accommodate my needs.
At the time of my accident, we lived in a duplex that had a main floor and basement with stairs separating the two. It wasn’t accessible for me to move back into. While I was in the hospital my mom searched for somewhere else to live, specifically looking at a home’s potential for accessible design and space. She found a townhouse that was listed as accessible, considered a no step entry and easy to get into with a wheelchair. The main floor had been remodeled; it included an accessible bathroom and a bedroom across from it with a wide door.
My mom and sister moved into it while I was in the hospital and I joined them 6 months later. After living there for a year, I felt like the walls were caving in on me. I found out it wasn’t as accessible as I thought. Although there was a full basement and my mom’s room on the main floor, I was only able to access 3 spaces: my room, the living room and the kitchen. I could barely even get into the bathroom that was supposedly accessible.
Although I have 24/7 nursing, I direct all my own cares. That means anything from talking someone through range of motion to letting my nurse know what I want to wear or when I want to get into my wheelchair. Sometimes I battle with myself or those taking care of me when it comes to making decisions. I find it difficult dealing with loss of control and having the ability to do things on my own. It can cause me to come to decisions that may not be to my benefit.
While living in the townhouse, there was a time where I refused to get out of bed and it had to do with an emotional and physical state. The main reason was because I thought, what was the point? I was only going to leave my room to go to the living room to watch TV, so why not watch it in my room? After three days of struggling, my mom finally just got me out of bed into my wheelchair and brought me into the other room. That was the lowest point in my life so far and will hopefully be the last.
Since living in a house where I could only access a few rooms wasn’t working, we bought a house on about an acre of land and remodeled it using a company called Equal Access Homes. They made it completely accessible so that I could go everywhere in the house and not have to worry about stairs, thresholds, or uneven flooring. The most important modification I made was putting in an elevator so that I can access all three floors. It gives me the freedom that I need in order to live my life.
Now that I’m able to access my entire home rather than just a couple rooms, I don’t feel trapped or boxed in like I did before. The basement is pretty much set up like its own unit. There is a living room, full kitchen, two bedrooms, two bathrooms, and a desk area for my nurses to sit at. My room is amazing and I even have a ceiling lift to help transfer me. It also goes all the way into the bathroom I use for showering.
Independence is really important for someone in my situation. It helps to be able to go everywhere I possibly can in the environment I live in. My feelings of being caved in are gone and I’m no longer literarily “stuck” or confined to one certain area. I enjoy my freedom and look forward to moving from room to room whenever I want to.