Mina’s Story – ‘Sometimes people look at me like I’m ungrateful, and at other times they completely shut down and ignore me and what I’m trying to tell them, as if I’m not worth speaking or listening to. ‘

I have FSHD and use a manual wheelchair to get around safely using both my arms and feet to propel me around. On numerous occasions I’ve had people start pushing me without even asking first which is not only startling, but dangerous since my fingers can get caught in the wheels or my ankle sometimes gets caught underneath, especially when the ground is uneven. I’ve had to relearn how to position my fingers and hands so that I decrease the chance of them getting hurt. I understand people want to help, but it’s amazing how different it is now than when I was able-bodied. People feel so entitled to just touch me and push me and cross those boundaries. And when I tell people to stop and explain how my fingers can get caught, the reaction has been just as strange. Sometimes people look at me like I’m ungrateful, and at other times they completely shut down and ignore me and what I’m trying to tell them, as if I’m not worth speaking or listening to. I’ve literally had people turn their backs on me once I start talking to them and explaining that they should just ask first! It’s really that simple! And it’s not like I’m screaming at them, I start with a “Thanks, but next time….” but it’s no use.
Today was one of the worst days. I was waiting alone at the bus stop, and a man came up to me, started chatting, then put his hand on my shoulder and knelt down right beside me, trying to make conversation even when I refused to engage with him. I didn’t know what to do since one, he’s able-bodied and two, I didn’t know if he was on drugs or mentally ill as many people are in that area.Trying to get away might have provoked him, playing along would have encouraged him, there was no one around to get back up from, and I would not able to physically defend myself. He could have dumped me out of my chair if he wanted to, or hit me, and I wouldn’t have been able to fight back, not physically, and not with a self-defense weapon since they are illegal here in Canada. He came with me on the bus pushing my chair, and I finally felt safe enough to yell at him to stop. He got miffed and mumbled to himself, but he left me alone. But I was so angry that I had to put up with this unwanted touching and didn’t have a safe way to get away. I’ve been thinking about what I could do to avoid that in the future, maybe fake a phone call and wheel somewhere else? I just don’t know. It’s hard enough commuting, and it’s so unfair thinking that I would have to change my bus stop completely just because of these types of people or even that I have to waste time and energy thinking about how to keep myself safe when I’m just trying to get to work. And I know I’m rather lucky because people don’t know what FSHD is or what it looks like, so a lot of times people think I’ve been injured and am simply doing physiotherapy. After all, how many people in wheelchairs still use their legs? I think that’s part of the reason why people still listen to me when I have spoken up when the situation is safer.