Earlier today, I interviewed my friend who lives with Spinal Muscular Atrophy. This is a disease which affects the mortar neurone in the spinal cord, taking away the ability to eat, walk or even breathe.
I asked my friend a few questions to get more information about what it is like to live with the disease. Honestly, it was heartbreaking to hear some of the answers because of the way the answers were so negatively answered.
What’s it like to live with a disability?
He told me that life with the disability is “pretty shit” because of how he is “treated differently and disrespectfully by society.” He also wishes for the world to be”more aware of the issues that people with disabilities face in their day-to-day life.” The upsetting thing is the fact that there are 90% of people in this world that aren’t able to think about the way that other people live due to the fact that they have never experienced living or being around anyone who is unfortunately seen to be different in this world because they are unable to do simple tasks that some people are unable to do easily.
Think about not being able to walk. Something that we view to be so simple taken away from us. The pain you would be in if you began to attempt to take one step. Think about how difficult it would be to keep your body healthy if you had to spend most of your day sat down so you could get around.
How does SMA affect your day to day life?
You may think that being disabled affects you physically. But, being disabled means that your affected mentally due to the fact that you feel like “you want to join in but you feel like you can’t because of the social aspects and the physical aspects involved.” It’s a massive shame that he feels this way because he is no different to you or me. I would love to be able to include everyone or make everyone feel as if they can join in as much or as little as they want. Unfortunately, not everyone has the ability to think the way that would be appreciated by people with a disability and people without.
What do you have difficulty with?
“Social anxiety issues aren’t helpful because it means that I have difficulty with being involved with my friends or family.” Even involving himself with friends or family is difficult especially in large crowds. This shows that despite having no choice but to be in a wheelchair, he still can’t go anything because of the concern of being different. What?! I honestly couldn’t believe what I was hearing.
It was at this point he wished for people to treat him “normally.” This got me thinking about what the definition of ‘normal’ is. I once told my family that I wanted to be normal but at that point I noticed how amazing it was to be different. I love being the way I am sometimes. I just have difficulty with getting it out there.
Social anxiety is something that affects many people in life. Difficulty with being in large or even small groups can be really overwhelming for some people and it means that they have to take time out to make themselves feel better. There is nothing wrong with suffering from it I just believe that if people were more aware about how to treat someone who is seen to be different then, the world would be a better place.
Thank you to my best friend, Owen for allowing me to interview you for this post. I really hope that one day the world will be more aware that it is important to treat you like an everyday person. I know I will for sure try my hardest while still helping you out.
Yugen – an emotional response too deep for words.