Image by Esthr via Flickr
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’d probably just dust himself off and apologize to me.”
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 hope I haven’t made it too complicated for everyone. I will reiterate that the vast majority of my dealings with people in the community are very pleasant and respectful, and are not like those described above. Now get out there and interact with your favorite cripple disabled person!
I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.
I have been lucky enough to know Mitch since 2005. I have never been anything less than enormously impressed with him, but this blog, conceptually and as written, only raises my admiration and expectations of him.
Great to be able to keep up to date with your life in this way. Thanks for the video of your trip to the beach. I miss you buddy.
Matt S, Vancouver, WA
Nice writing of course. Know what I find interesting… is when you first meet someone with a disease or disabled…it's kind of how you identify them. That's Sue the curly haired woman, Joe the big Pats fan, Mitch the guy with MS. But after a while when you get to know a person they stop being Mitch with MS and start just being Mitch. You do such a good job of not letting your MS define you.
I remember how upsetting it was to me when you got the voice software because honestly I would see you so often I would really forget that your MS was progressing until it gave a reminder…sticks to chair…scooter to Ibot…keyboard to voice.
Anyways, as usual a little longer than I intended but I can only imagine that the "new" period of meeting someone when they are highly aware of your disability must be tough, it would make me grumpy for sure wanting people to know me as just me, and not me +.
Jen
Hi Mitch. I enjoy reading your well-written and entertaining blog. As a fellow 45 yr old , progressive MSer also in a power chair, I would like to comment that I find it very rude when strangers ask me why I'm in a wheelchair. I am private and don't wish to discuss my health with strangers. Also, because, as you know, we live with this 24/7, I enjoy "forgetting" about it whenever possible.
Whenever strangers ask me what is wrong with me, I think they would never go up to someone and say "Why are you so fat?" or "How long have you been bald/ugly/short?" etc. Why is this any different?
Thanks for listening to my comments, Mitch and take care.
Jane
Jane, thanks so much for reading my blog and responding to this post. I completely understand where you are coming from. As I alluded to in the post my opinion on the "why are you in a wheelchair?" intrusion is not universal. In fact your feelings on the subject may very well be more representative of the wheelchair using population than mine.
Good luck with your MS. Take care.
Good Morning Mitch;
I have not seen you in a bit except through facebook. I am saddened that your diseases is making life more of a challenge than it should be but amazed at how you are handling it. Not surprised because you were always someone who seemed capable of handling many things effortlessly but proud to call you a friend. If there is anything I can do to help, let me know. For now, I will follow your progress and keep you and your family in my thoughts and prayers.
Take care.
Kathleen
I agree with you on the kids. They think my scooter is pretty cool. One small boy asked me how fast my motorcycle could go? So, I no longer have a scooter but rather a bike. Just like Peter Fonda in Easy Rider. Gary
Nice set of guidelines. I try hard to set young children (and the parents of young children) at ease – you know how parents will gather their children to them as you pass, as if you are 15 feet wide and have spinning blades? My usual response is to smile (if possible) and to say, "Don't worry, I haven't mowed down a child in weeks" (or something to that effect).
Kathleen,
Thanks for reading my blog. Glad you like it. There is life after Contech, isn't there?
Anonymous,
I actually love it when the cute little kids are amazed by my wheelchair, if even if their parents are horrified by their bluntness.
and Katja,
I love that comeback. May I borrow it sometime?
Hi Mr.Sturgeon,
The good part about being "different" is that People feel like they want to help you. For example when I was younger I was in a grocery store and an elderly person gave me a dollar because she felt bad for me. It has happened more than 3 times in my life, and it makes me laugh and what can you do? Except buy some candy, but now those days are over and I dont get money from stangers anymore. So now i'm broke. Haha just kidding. The only thing that gets on my nerve is when little kids piont and say: Look mom! Its a kid with one leg! Which leads to everyone else thats in the room to look at me. I find that embarrasing but I try to hide the embarrasment and smile. I really don't like it at all. Tell Mrs.Sturgeon I say hi! Take care,
Christina Kouros
Christina,
I've never had anyone offer me money! Sometimes people want to help, but they just don't know what to do. When you were a small girl it may have been OK to give you some money, but of course now that you're in High School that wouldn't make sense anymore.
Like I said in the post, I try not to get upset by anything little kids say. They just don't know any better. I try to joke with them and show them that I'm just like them except for my disability.
But it can be tough to stay smiling when everyone is looking. I think they are looking at you most of the time because you do such an amazing job in getting around on just one leg.