By Guest Blogger Mariah Kilbourne, Ms. Wheelchair America 2013
Freedom! Independence! As an eighteen-year-old college freshman, I was bound and determined for those things to become mine. As I crossed the threshold of my college dorm the first day of the semester in 2007, I was beginning a new journey. For the first time in my life, I was on my own. It was thrilling, yet terrifying – I felt joy, excitement and a little trepidation all rolled into one. I was on my way to become all that I was meant to be. Many steps led up to that moment, to making that life-changing leap of independence possible – including going to college, driving my accessible van and living on my own.
I have been a mover and shaker since the day I was born – three months early. I just could not wait to get my start in the world! Due to my premature birth, I was diagnosed with cerebral palsy. My cerebral palsy affects the way my muscles move, so I rely on a wheelchair – a.k.a. “The Beast” – for mobility.
For a long time, the thought of living on my own made me anxious. I was the kid who called my mom at 3 a.m. during sleepovers because I wanted to come home. I had never been to sleepover camp without my mom as a chaperone. When the time came to consider living on my own in a college dorm, I adamantly told everyone it would not be happening. I was 110 percent convinced I would be a commuter student, and I would not consider otherwise.
My firm decision was shaped in part by my cerebral palsy. At my childhood home, my accessibility and care needs were always met. My parents had seamlessly worked accessibility features into our custom home design by lowering shelves, cabinets and light switches; adding grab bars and shower benches; and widening doorways. All these features were integrated into my home environment so that I could live comfortably and confidently.
Then came my final semester of high school and the college campus tours. As soon as I rolled into the park-like environment of the Texas Lutheran University campus, it immediately felt like home. Everyone was friendly, welcoming and encouraging. Maybe, just maybe, I would consider looking at the dorms during my visit. When I saw Trinity Hall, an accessible dorm with all the same accessibility features I had at home, I decided to take a giant leap of faith. I became a proud resident of that dorm in August 2007.
I flourished in my college environment. Confident and courageous after my first few months in college, my parents had to drive up to see me because there was no way I was moving back home. I loved my newfound independence. I became an active member on the Campus Activities Board, the Alpha Mu Gamma Spanish Language Club and more. I was thrilled to accept an editor position on the college newspaper, which allowed my passions for writing, photography and meeting people to thrive.
After I finished up my college career as a Summa Cum Laude graduate, I became gainfully employed in a position with the City of Seguin, Texas, which I still proudly hold to this day. In my positions with the Main Street Program and Seguin Economic Development Corporation, I assist with writing columns, photography, social media and other tasks. I also write a bi-monthly column for a disability resource site – The Mobility Resource.
My years in college had been a major success. I never let my physical challenges get me down. Instead, I used them as my power, force and fuel to get through life with gusto and joy – at 8 MPH. After my college graduation, I was determined for my success and independence to continue.
However, I faced an unexpected hurdle after I packed up and moved out of my beloved Trinity Hall. I quickly discovered there is a lack of accessible housing throughout my home city of San Antonio, the state of Texas and the United States at large. I called about apartment after apartment, only to be told that they did not offer fully accessible units, or that the few Americans with Disabilities Act (ADA) compliant ones they had were already occupied with tenants and had been for years. I contacted local independent living agencies to get advice and was told that the accessible housing options offered by the state were currently filled and, worse, had a waiting list of more than 10 years long. Nonetheless, I placed my name on the list. Without any other viable options, I moved back home.
If I have to continue to wait for services and accessible housing options, I will be stuck at my childhood home until I am at least 34 years old. I do not want to be known as the successful college graduate and independent business woman who is “living with my parents.” There is shame and negative stigma associated with that notion. After years of hard work to become independent, I’ve had to regress and give back some of my freedom because no other choices were available to me.
Unfortunately, this same scenario is happening to young adults with disabilities throughout the United States. In a 2010 NPR Report by Joseph Shapiro noted that the number of young adults moving into nursing homes is on the rise due to a lack of resources available for people with disabilities to live independently in their communities. Data from the Department of Health and Human Services indicated that individuals ages 31 to 64 accounted for 14 percent of nursing home residents that year.
The report went on to state that the trend is likely the result of limited resources to help people with disabilities. Even as funds for home-based care have increased in some states, the need for assistance is rising faster. Ultimately, states are required to pay for nursing homes, but aren’t required to pay for in-home assistance, leaving many people with disabilities few options. This, even though the Supreme Court determined more than 10 years ago, in Olmstead v. L.C., that people with disabilities should have the option to live in their communities whenever possible.
This is not the future I envisioned or want for myself or for my peers with disabilities. People with disabilities have the right to live independent lives of purpose, just like our non-disabled peers. It is my hope that we will continue to support housing options that encourage independence within our communities. And it is my fervent hope that we continue to create an inclusive world for people of all cognitive and physical abilities so that we may all be included, respected and valued as active participants in our communities and society at large – without any limits or barriers.
Mariah Kilbourne is a Summa Cum Laude graduate of Texas Lutheran University, where she majored in Communication Studies and minored in the Spanish Language. She currently works in the Economic Development Office for the City of Seguin, Texas, and is also, at the age of 24, a published writer, successful advocate and avid adaptive sports enthusiast.
Born with cerebral palsy, Mariah was crowned Ms. Wheelchair America 2013. As Ms. Wheelchair America, Mariah is a spokseperson and advocate for the 57 million Americans living with disabilities. She is using her year as Ms. Wheelchair America to encourage everyone to be “Inclined for Inclusion” through accessibility. She wants to increase fair and equitable access to public facilities, especially in historic districts, which are currently inaccessible to people with disabilities. She travels throughout the United States to promote the need to eliminate architectural and attitudinal barriers that have plagued the disabled community in the past.