There are some things about having muscular dystrophy or any disability that require you to train the people around you so that some things become automatic. I’m not saying you need to have a training class and you should never expect everyone to be at your disposal, but there are situations that arise which offer opportunities for you to tell people why you need something the way you need it. Then they’ll remember next time.
For example, people will serve me beverages in whatever cups they want to unless I specify, “If you could please put it in a plastic or lighter cup, that would make it really easy for me to lift it and drink it.” Not only am I asking for what I need, but I’m telling them why I need it that way. This seems to help people make the connection and remember it for next time. Remembering to say “Thank you ” for the accommodation is also an important thing to do.
Here are a few things I’ve noticed recently that I’ve had to train my friends/family to do over the years.
1) Serve my drinks in the lightest cup/glass possible
As I mentioned, reducing the weight of a cup makes it much easier for me to drink whatever is in it. Light, thin plastic cups work great. Heavy beer mugs or coffee cups do not. True, a straw would be helpful but not everyone has straws at their homes. Also true is that the amount of beverage could be reduced, but then who wants to do that?!?
2) Keep me warm
I hate being cold and am prone to being colder than everyone else around me. If someone wants to open a window, I don’t even have to ask for a blanket anymore. Same goes for a group event that is outside. My family knows they’re gonna have to sit me right next to the grill or the campfire or cover me in blankets. It’s almost automatic. I also carry my own extra blanket in the car and have been investigating heated clothing as well, so I can keep myself warm too.
3) Help me with food
In buffet-style situations, I’m not the most adept at putting food on my plate. So at parties or restaurants where food is self-serve, it’s an automatic. If I am feeling particularly healthful that day, I can also tell the person helping me to keep the portion size small and therefore restrict myself from eating like a pig.
4) Get out the ramps
There are a few places I go where my friends/family meet me at the car to grab my wheelchair ramp when I arrive so I can get right into their homes. This works really well when it is cold out because I can just wait in the warm car until the ramps are all set up!
5) Know when not to help
There are times when I don’t need as much help as people might assume. It’s also important to politely train people to know what you don’t need help with. For example, I’m not a baby bird and don’t need my food chewed for me first! But if someone offers to do something like cut my steak for me, I politely say, “Thank you so much for offering, but it’s great exercise for me!” or something to that effect.
Part of the reason this “training” is important is because it helps me feel more “normal” and less high maintenance in future interactions with people. When I don’t have to ask for something, I don’t feel like an inconvenience but still feel special because someone remembered. How have you “trained” the people around you to help you out?