Welcome to my second post in my series for SMA Awareness Month! In my last post, I tried to give a general overview of my life with SMA. This time, I wanted to talk about how old people perceive me.
I’ve mentioned that I’ve been in a wheelchair since I was two years old. I’m used to the stares – they don’t bother me when they come from little kids, who are probably seeing someone in a wheelchair for the first time – they are a bit more unexplainable when they come from adults! But it’s not the stares that surprise me the most – it’s how some people react when they interact with me.
To start with – some people interact AT me, not with me. These are the people who talk at me, and they direct their questions or comments about me to whoever is around me, rather than talking to me. They assume that because I am in a wheelchair, I am delayed developmentally and can’t carry on a conversation.
Even people who do interact directly with me bring a lot of assumptions into the conversation. If I’m talking to someone out in public, rather than at work or at school, so many people are surprised that I have a life and a job and school. My life might look a little different than a “normal” person’s, but SMA only affects me physically, not mentally.
I don’t want to sound bitter about this, but it does get frustrating to constantly have to disprove people’s assumptions about me and my life. That’s a big part of the reason I started this blog! I want people to understand that yes, I have SMA, and yes, I use a wheelchair and that affects my life in a big way – but it doesn’t mean that I don’t have a job, that I don’t have friends, that I don’t care about hair and clothes and makeup. I want people to think of my diagnosis and my wheelchair as just another part of me, like my sarcastic sense of humor and my obsession with the Real Housewives.
Please feel free to comment or e-mail me at firstname.lastname@example.org with any questions or comments. My first post in this series really seemed to get people’s attention, and I’d love to connect with all of you!