I have a rare condition called Spinal Muscular Atrophy. I was diagnosed at the age of 1 due to not progressing as my twin sister was. SMA is a genetic disorder, and as I get older, I will slowly deteriorate. I was given a life expectancy of five years old; however, I am now 25 and I don’t plan on slowing down anytime soon.
This year for International Disability Day, the theme is “Not all disabilities are visible.” I’m in a wheelchair, so I often feel that my disability is visible and obvious to people. I thought that, due to this, I didn’t have a reason to participate in or share this international disability awareness month. However, people do not understand what I go through every day. Not all people understand what goes into having a rare disease or what I deal with behind the scenes. People often think that because someone is in an electric wheelchair, they have everything sorted out and that life is quite simple, but you don’t always see the difficulties. I have trouble finding accessible buildings or being able to reach something due to being quite short and always sitting down in a wheelchair. The constant fight for the medical system to understand rare conditions People may not understand that it takes two other people to help get me ready in the morning and that I’m often unable to do certain things on my own.
Over and above physical disabilities, our mental capacity is often questioned due to being in a wheelchair. My mental capacity is as good as anybody else’s. I have managed to get a degree and a job in a challenging business environment. Something that I really struggle with is when people speak over me to the person that I am with because they don’t feel that I have the capacity to answer for myself. I believe that this is due to a lack of knowledge, and people just assume that a disability includes both mental and physical capabilities. I feel it is important to create knowledge to increase the level of respect that people have for people with disabilities. Create awareness that just because I may have a physical disability does not mean I cannot answer the question for myself.
We often don’t understand what people are going through, and we don’t understand everyone’s day-to-day battles. It is important to keep an open mind and show care and compassion to all people. I have always been pretty open about my disability, as I believe that awareness is the door to acceptance. If people have more information, they will be more open to giving people with disabilities more opportunities.
