I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair. My friend remarked, “You could hurt somebody the way you drive.”
She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he would be more likely to apologize to me than be angry with me.”
Without further ado, here are my top 10 rules to follow when you meet a wheelchair user in public (at least if the wheelchair user is me):
1. If you’ve read my earlier posts, you know that I can sometimes be seen in my high-tech wheelchair, the iBot. If you’d like to know how it works, and I’m not in a big hurry, I’ll probably tell you everything I know about it. However, please don’t yell out in the middle of a busy shopping mall, “Earl! Earl! Get over here! You’ve got to see this! This chair is the freakiest thing I’ve ever seen!” This really happened to me.
2. If you are so inclined, feel free to offer me assistance with tasks. However, if I decline the offer, please respect my wishes. Just because I’m sitting by the door doesn’t mean I want to go out through it. Just because I’m in line for a beer at Fenway Park doesn’t mean I want you to buy me one. Bad example — I do want you to buy me one.
Also, please don’t take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to make the offer if it feels right to do so, but be prepared to step away if I decline.
3. I don’t mind if you ask me why I’m in a wheelchair. It’s killing you, right? You just have to know, and I don’t blame you. I feel the same way when I see someone in a wheelchair. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
4. On a related note, please resist the urge to give me advice on how I can be fixed. I don’t know how many people have, upon learning that I have MS, blurted out the fact that they know the cure because of a friend or relative’s experience, and here it is!
And it’s almost as bad to utter, “I’m not saying this is a cure, but you should try it anyway. What have you got to lose?”
My mind. I’ll lose my mind if I try all these potential cures. I pick and choose the ones I’m most comfortable with.
Now, if you are a close friend or a medical professional, and especially if you’re one of my close friends who is a medical professional, an acceptable conversation starter would be, “Did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. Probably I already did, though.
5. Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, don’t go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. Be cool.
6. Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. “You poor thing. I feel so bad for you,” is not good.
7. Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is beyond annoying.
8. When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
9. If your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile, I’ll get one right back.
10. Do not, under any circumstances, make the “beep – beep – beep” sound when I am backing up. I cannot stress this enough. Under no circumstances.
I hope I haven’t made it too complicated for everyone. Now, laminate this list, place it in your wallet or purse, and go make me proud.
All good. I would love to see this list as part of some basic civility class. This is not hard stuff, most of it is treat me as you would anyone else. We're just people!
Having all this hardware attached to our backside almost makes folks forget that we are just people.
My son wrote so much of this info in his blog. The funniest one is when his barber told him about her friend who jumped out of a helicopter and was cured of her disease. Who knows what disease.? The saddest one is of the time he was accosted by a drunk in a bar on St. Patrick's Day and was rescued by two people who work in rehab.
This to a man who was previously physically fit as well as six foot two. All that was noticed, was a handicapped person in a wheelchair. Mostly, the everyday reaction from many people chipped away at his inner self and caused despair.Unfortunately, the people who should read this article never will.
I might add many work in Washington, DC.!!! Meow!!!
Hilda
Hilda, I think people are moving too fast sometimes to stop and noticed that there is a human being sitting in that wheelchair. Easier just to look through us.