Image by Esthr via Flickr
Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):
- If you've read my earlier posts you know that I have a high-tech wheelchair. If you'd like to know how it works, and I'm not in a big hurry for some reason, I'll probably tell you everything I know about it. However, I would appreciate it if you don't cause a scene. 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 last week.
- If you are so inclined, feel free to offer me assistance with tasks. However, if I say "that's okay, I have the door" then please don't open the door for me anyway and just get in my way and turn what was going to be a slick maneuver into a pileup in the doorway. In many situations I wholeheartedly welcome offers of assistance like this. So 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 offer assistance if it feels right, but be prepared to step away if your offer is kindly refused.
- Personally, I find it okay if you ask me "why are you in a wheelchair?" It gives me a chance to advocate for my favorite disease. 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.
- On a related note, unless we are close friends please resist the urge to give me advice on how I can be fixed. Most of the time a person is in a wheelchair because of serious injury or illness. However, I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure for MS because of a friend or relative’s experience, and here it is! In contrast, 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. I have no doubt that your heart is in the right place, but remember that there is a 99% chance that I know way more than you do about why I am broken, and what I can and cannot do about it. I’ve spent hundreds of hours studying this.
- Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, do not go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. I am hereby publicly apologizing for all the toes I already have, or may in the future, run over.
- 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.
- 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 really annoying.
- 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.
- A couple of months ago I was preparing to leave a restaurant, and sat before the exit trying to determine the best strategy for getting through those big heavy doors. Sure enough two young men zigzagged around me and barreled out of the restaurant without even asking if I could use some help with the doors. If you see a disabled person pausing in front of a door, then there's a good chance that they would appreciate somebody holding the door open for them. After the doors slammed behind the two young men I threw my arms out in disgust, a pure reaction, and a waitress saw me and opened the doors for me. I was a little embarrassed that I had reacted in that demonstrative way. I don't feel "entitled" to help from everyone who comes along, but the situation just struck a chord with me.
- Finally, 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.
I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.