As long as I can remember, people have praised me for “always smiling”. Every so often I encounter strangers who say “look at you smiling with all that you have”. I usually respond by laughing, because I truly don’t have a reply.
Or, rather, I don’t have the energy to explain. How can I explain my internal battle, how can I reveal a ‘weakness’ that I need to keep locked away because if it comes out and is visible for everyone to see then it will became part of my reality, like a guest that will invade your space and never leaves? More urgently, how can I make people understand that my disability has never been an issue that made me low or triggered my negative mood?
I was born with muscular dystrophy, a progressive muscle-wasting condition. I have never experienced life without disability, and for that reason I have always accepted and embraced my disability. It is part of who I am, so how can I dislike or reject it? How can I long for something I have not known?
When I tell people this though, I can see in their eyes the disbelief as they give me a pity look which says ‘we know you are down because of your disability, and trying to hide it’. Disability in mine and other’s experience does not have to affect your quality of life – recent research has shown life satisfaction for people with spinal cord injury showed they are not affected by their physical ability.
It baffles me people can’t see there are so many other factors that will affect your mental thoughts. The fact that from a very young age you are constantly ‘fighting’ a new daily battle; from getting accepted by your peers at school, to convincing inadequate teachers that your wheelchair does not mean you are not smart enough to sit an exam, to being excluded from social outing due to inaccessibility.
And things only get harder as you grow older. Choosing a subject to study becomes almost a battle as you try to prove to universities that your disability is not an issue and you are forced to get a health certificate to be worthy of a place whereas every student only has to present their grades.
Applying for more than 300 jobs and reaching the interview stage only to get rejected every time, and you know it’s your disability that is being rejecting and not your experience or qualifications. Missing appointments or events because taxis won’t stop for you because of your wheelchair. Going to see your doctor when you are ill and the minute they see you decide whatever pain you are going through has to be part of your disability, no matter how hard you try to explain.
Why does everyone want to blame disability for their outdated attitudes? And more importantly, why does everyone want me to be low because of my disability? In reality, it is them that have the problem with my disability and not me.
I would strongly urge people to look at the person, not their disability. Look at our inner characters, not our appearance, to talk to us. Understand our thoughts and experiences rather than making sweeping assumptions based what you have been ‘taught’ about being disabled by TV and media.
Over the years I developed my own system of dealing with any dark or negative thoughts, and found my escape through writing. I might not talk too much to people about my issues for fear they won’t understand or empathise, but when I write? I find a pen and paper far more open and understanding.