Hello everyone. I hope someone can benefit from my experience and understand the importance and need for Universal Design.
My story starts back in 1985. I was 19 and living with my folks in a split level single family home. It was my unfortunate situation of being in wrong place at wrong time. I was a passenger in a vehicle that got hit head on. It left me with a high level spinal cord injury. After months of hospitalization and rehabilitation, I finally came home just before Christmas. Being carried up the very steps I used to run up and down was difficult to overcome both emotionally and physically. My family and then new bride had to lift me up those steps. I cried nearly ever time in the beginning because I felt the burden I now became.
That was just part of it. These “cookie cutter” homes left little space to get around in. I could not get into any of the bathrooms. My hair was washed in the kitchen tilted backwards. Another hardship on my loved ones. Getting around was very limited. So, I spent most of my time in bed at first. Eventually, I realized I had to live my life no matter where I was. So, over the years, we worked on making the house more accessible. Best bet was to use the basement because there was more room and with sloping drive way and sidewalk to enter through the sliding glass doors.
I was interested in high school to pursue architecture. I realized even then, without a degree, there is a need to make places sustainable. From the time a family purchased a home that they should have the opportunity to live there all of their lives. Even when things changed with age or in my case with trauma, they should not have to expend extra funds trying to retrofit their homes.
I was fortunate that I knew some great people in the scouting community that helped with donations and volunteer work. Family and friends of the family also helped where they could. But not all people have those same capabilities. It slowly came together and allowed me the independence I desired.
It allowed me to go through vocational rehabilitation and then on to getting a job. I was very independent which allowed me to take the burden off the family. Once a few things fell into place, I was able to go to college and pursue my Bachelor of Architecture from Mississippi State in 1999.
After that I looked into Universal Design. I saw the real need after other people like me told me stories of trying to live in a home that needed retrofitting. In 2009, the market for construction hit rock bottom and I was laid off. At the time, I was a member of the Anne Arundel County Commission on Disability Issues. The short of it is that once appointed by the County Executive, you volunteer to work with other people in the disability community to resolve issues and make advisory recommendations. One thing we worked on was “Visitability” which basically required new construction to make at least one area entry in a main floor a “zero” entry. Meaning no steps or obstructions leading into the residence so a wheelchair can easily gain access. That was my first taste of the Universal Design community. Met with a few advocates and actual practitioners that helped develop the bill that would eventually pass and become law.
I started a nonprofit in 2009 that would assist people with disabilities. Late in 2010, it became a Center for Independent Living (CIL) that covered 2 counties in the state of Maryland. It’s only able to become a CIL through a grant from the federal government. Once again, during that time, I saw many people that acquired a new disability and could benefitted from Universal Design. Trying to add and retrofit changes to be accessible is not always going to work because it’s too expensive, physically impossible or lack of understanding the impact of the situation on the family. Meaning, they would just have to deal with the current condition even if in the end it would hurt or even cause someone to end up with a disability.
That is why I feel strongly that Universal Design needs to be an asset and become the norm and not the minority. Thanks for taking the time to read my story. I hope you can feel a little more motivated to do something about the lack of Universal Design.
Housing and Health
Ir is a stress inducing unneeded situation that constantly creates a number of health issues. It was not until I actually gained more access in and out of the house that my health truly got better. My mental well being went up and I felt worth more than I had felt before. Coming home from my injury made me very depressed, but I kept hoping, praying and figuring out how to change things. I can only imagine how much easier life would have been with things already in place.
Physically, my body only got stronger and healthier from getting around. Being sedimentary only kept my health down. Lost muscle mass, lacked energy, spent a lot of time doing little to engage with others and became a recluse. This all impacted the mental aspects of my condition. It was a vicious cycle until we managed to change the living conditions.
The added stress of the financial burden also contributed to the depression. Millions of Americans stress over keeping their families fed or safe, making sure bills are paid, etc. Throw the financial impact of making a home accessible, it’s like a ticking time bomb.
There were many moments in which we had bouts if arguing about little things because of the living conditions. After 3 years of that situation, you can see how it grows not just on you, the person with the disability, but the other family members that want to change things for the better, but can only do so much. Back in the late 80’s there was no ADA that could even be thought about fir housing like today. But, even today there are limits. Unless you have money to have a home custom built, you are stuck with the limited options. That is no way anyone should have to live.