A few months ago at church, an usher came up to me and made a gesture that was — in his mind — “nice.” Seeing me, the young guy in the wheelchair, he placed his hand on my shoulder and said in a loud voice “let me know if you need anything!” Well accustomed to these awkward encounters with people, I simply nodded my head and moved along.
As my brother and I headed toward our seats, I said to him, “Hey, guess what — I’m blind, deaf, and can’t walk.”
My “favorite” scenario was when two guys came up to a friend and me at a movie theater several years ago and prayed for me to be healed. This happened as the movie was about to start. I think they were a little disappointed when I wasn’t jumping out of my chair by the time the trailers ended. My friend was embarrassed for me, but I usually find a way to poke fun at these scenarios.
Here’s the thing: The people in these situations weren’t just trying to be nice or empathetic to me — they were pitying me because I have a disability.
The Oxford dictionary defines empathy as “the ability to understand and share the feelings of another,” while pity is “the feeling of sorrow and compassion caused by the suffering and misfortunes of others.” When I think of pity, I feel that the term is appropriate in situations like death, a major illness, loss, etc. However, is my merely being in a wheelchair and having a disability enough to warrant pity from total strangers?
If you’ve read my columns for a while, you’ll know that I live an active, fulfilling life. I have challenges that others don’t have, but I don’t “suffer” daily. I don’t like receiving pity from total strangers, because the people who take one look at me and pity me are making assumptions about my quality of life.
Only the people who truly know me and listen to my story can empathize with me, and for that I am grateful. Close friends know my struggles and my frustrations. They know when I’m dealing with fatigue and stress from juggling work, caregiver schedules, doctor’s appointments, physical therapy, and cough assist sessions. I maintain a positive attitude most of the time, but it helps to vent to people who “get it.”
I am grateful for people who are empathetic and compassionate, but pity isn’t something I’m fond of. Granted, the experiences of one person with SMA may not mirror the experiences of another. Others with SMA have significantly harder lives than mine, and that’s why it’s so important to listen to people’s stories.
The next time you see someone in a wheelchair or with SMA, don’t jump to assumptions and start pitying them. I promise you that it makes us feel awkward and alienated. Instead, talk to them, ask questions, listen to them, and hear their stories. We’re just people, and all that we ask is that you treat us as such.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.