Please Don't Call Me 'Wheelchair Bound'
I was on the phone with my Long Term Disability claims consultant completing a “randomly selected” review of my condition when she asked, “Are you wheelchair bound?”
How do I answer that question? My response… “What do you mean by wheelchair bound?” What does anyone mean by “wheelchair bound?” No, I am not bound to my wheelchair by some medieval torture device. No, I’m not strapped down like a misunderstood patient with mental illness in early American history. No, I’m not superglued to my chair. Why do people continue to use the term “wheelchair bound?”
It seems we have not come as far as we would have hoped when it comes to inclusion, acceptance, and understanding of disabilities. People who use wheelchairs are not bound to their chair. The wheelchair is a mobility device used to assist hundreds of thousands of people in everyday activities for a multitude of reasons. Some use a wheelchair more often than others. People with spinal cord injuries, spina bifida, muscular dystrophy, or cerebral palsy may use their wheelchair more often than those with chronic fatigue, EDS, POTS, fibromyalgia, or other chronic pain conditions. However, I know many people who have the aforementioned disabilities who do not ever use a wheelchair. But I have never met anyone, no matter how severe their physical limitations, who stayed in their chair 24/7, 365 days a year. So what do you mean by “wheelchair bound?”
I think you mean, “Do you use a wheelchair for everyday activities,” or “Do you use your wheelchair a certain percentage of the day?” Yes, I use my wheelchair to help me perform everyday activities such as going to the store, an appointment, or visiting a friend. Yes, I use my wheelchair to assist me in my home. Yes, I use my wheelchair a majority of my day. But I also use my bed, my couch, my car, my walker, my braces and other items to assist me in comfort, pain control and mobility each day. I am not “bound” to my wheelchair.
By saying “wheelchair bound” you are assuming I am stuck in my wheelchair and unable to perform daily activities. You are assuming I am inferior, or less than capable of leading a happy, productive life. You are perpetuating the stigma that all people who use wheelchairs cannot stand or walk, causing a plethora of discrimination issues for individuals who are part time wheelchair users. This mentality needs to be altered for our society to move forward in our acceptance and understanding of disabilities.
Please don’t call me “wheelchair bound.” I am not bound to my wheelchair, I am liberated by it. Because of my wheelchair I can go places and do things I would never be capable of without it. My wheelchair is not a negative item that should be looked down on. I don’t need to be pitied or seen as less worthy because of it. It is a device I use to allow me to have the best quality of life possible. So, no ma’am, I am not wheelchair bound. I am a wheelchair user who is liberated, not bound, by my device.
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I spent 16 years searching for answers to my mysterious symptoms, and finally at the age of 32 I got my diagnosis. 3-Methylglutaconic Aciduria with Mitochondrial Dysfunction. It’s a very rare organic aciduria that affects my ability to process protein, and affects mitochondrial function. I have multiple system impairments as a result of my rare illness including mitochondrial disease, muscle weakness, lung disease, gastrointestinal problems, urinary issues, dysautonomia, and neuromuscular disease. I live with my loving husband of 13 years and my fur babies. My hope is to bring awareness to the struggles of living with chronic, rare diseases.
marie-harman