Wednesday, October 28, 2009

What I Want to Write to Abled People But Don't

Personal updates to follow at end.

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don't know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don't mean themselves. I've found what they said to be true. My suggestion is to at least try, because often you'll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone--about the kids' school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don't know me, make the same small talk with me as you would with anyone. If you already know me, I'm truly the same person. If you're feeling awkward about wheelchair use, work on overcoming that; I don't feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won't make eye contact, say hello, or speak to me anymore. If you're so concerned that you'll be rude that you'll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

-Don't race me to the elevator, jump on, and let the doors close before I can get on. Don't offer to hold the heavy glass door for me and then let it slam hard on me. Don't illegally hog up all the disabled parking at the school without a permit. Don't make your child get up when she tries to sit next to my kids. See, you're nicer than that--what do you have to worry about?

-When my eyes open wide with fear, like this -- OO -- back away slowly. *Please* do not tear up my wheelchair or allow your kids to do so. I cannot protect myself and often can't move out of the way quickly.

-This one's tricky. Don't stare and point--I will stare and point back. But don't avoid talking to me and looking at me. It's very weird and lonely to sit next to people for an hour or hour and a half and not have them look at or speak to you.

-Don't squeeze past like Borat! Please be aware that your rear end or crotch is at my eye level--Nancy Mairs was being polite when she wrote "Waist High in the World." Please give me time to move or go around and be aware that you can cause me a lot of pain if you force your body between my wheelchair and a wall, push me in the back, etc.

-Please do ask if it looks like I need help with something--I'm reluctant to ask because of people who have snapped but I may need assistance. But please accept if I say no--I may want to push an automatic door opener myself so it doesn't close on me when I'm halfway through and trap me between double doors--again, I can be injured if you try to push me in the back to "help" me over a bump, I can't get my chair off the lift if you overtighten the hooks, etc.

-Don't hit me in the head with your shopping bag or backpack or prevent me from moving or seeing by placing yourself or objects in front of me. Give me time to move or go around.

-If you have placed a long scratch on or dent my wheelchair, especially intentionally (and squeezing past rather than going one step around is intentional), you might consider parking your car far, far away from the disability parking. My wheelchair is part of my physical appearance and I like it the way it is.

-Please do not ask me or my friends what's "wrong" with me. Please do not dig for details so you can tell me how I need to fix it, especially if we've just met. Don't whisper "acupuncture" at me every time I roll by. Chances are that I've tried everything, alternative and traditional, that won't harm me and have invested huge amounts of money and time into it, to little end. Please accept the way I am. If we know each other well, you can ask/discuss more privately, but please protect my medical privacy if I entrust you with it.

-Please do not test my reflexes and electromagnetic braking by hurling your body in front of me. I could end up in a wheelchair (joke recalled from Wheelchair Kamikaze).

-I don't want to find out what cartwheeling backwards on a ramp is like, so don't play with the anti-tip wheels on the back--they are not calling your name, nor your kids'. Don't climb over my lap, lean on the scooter, or climb over into the front end to get by. I am not your footrest. Please do not scratch up the paint, whirl me around in my seat, or pat me on the head.

-Unless you're a close friend or family, don't feel up my wheelchair, rubbing your hands all over the hand controls and seat back, even if I'm not sitting in it (this happened a lot at the hospital ICU, with church members and families of other patients--they did not listen when I asked them to stop). I am going to be dragging out the Purell when I get home, not from OCD (that's CDO alphabetized), but because I don't want pneumonia again. Trying out the scooter is by special permission. I don't run up to the chair you're sitting in and start pulling on or caressing it.

-Even if I demur, I love compliments ("what, this old wheelchair?") and people who are positive. Please don't make jokes about my wheelchair unless you can be original (speeding ticket and beeping noises, not so much). But again, don't make fun of me. I am as much a nerd about wheelchair use as about everything else and will be quick to bore you with technical specifications if you show interest.

-No, I don't know that other wheelchair or scooter user who always drives in the street. Unless it was me because of a lack of curb cuts at the hospital/medical complex. Yes, I know you were almost in a wheelchair once. So was I. :)

Most of these are pretty obvious and people adopt them easily when they know.

Miss Manners covers this better than I do--she's a liberal and very feminist (start one page back; she discusses visual impairments in the next section and then has another section on wheelchair use).

This lacks a nice wrap-up, but that sums up my life right now. I originally wrote this in a more neutral tone but switched to a more humorous tone (I hope it sounds this way rather than sarcastic)--I think some people are so worried about making mistakes when talking to disabled people that they won't try.

Personal updates:
I have been writing some but not as much, not getting around to final editing and posting because of fatigue and pain or other things that must be done when I'm not fatigued or in pain. We have been at a truce in our household, thank God (though it's not really an equal truce--"he's decided" that it's not fair to ask that much of me when I'm in very severe pain or ill). I talked to an assistance dog organization last week and get to meet with the dogs next week--this really good organization typically helps veterans, but they do take applications from others and have graduated some non-vets. I had dropped the application process because I can't afford the couple of weeks' hotel and other travel expenses. Two other state organizations are now defunct and one requires financial commitments and fundraising. I also found a new primary care doctor who is highly recommended--and only five minutes away. This will be a lot easier logistically, in terms of fatigue when I'm sick, etc. She is a mom to two boys and wants to keep a small, unrushed practice--she has just one assistant and plenty of time for people, my friend says. My last doctor's religious beliefs sometimes caused problems in our interactions and with my friends' interactions with him; I am hoping this doctor's do not.


RMJ said...

Came here from FWD - great post!

FridaWrites said...

Thanks--much appreciated!

Unknown said...

Also via FWD--really good post, a lot of food for thought for me. Thank you!

FridaWrites said...

Thanks, both of you--I am also pleased to discover FWD.

kitrona said...

Also here from FWD. Thanks for the article; I hadn't thought about the bag issue before, but once I stopped and thought about it, it was pretty obvious. The rest... well, some astonished me (people spinning you around? what? racing you to the elevator and then shutting the doors?? where did they learn manners?) and some were obvious to me, though obviously by no means all! This was a great post, informative and useful. Thanks for writing it!

FridaWrites said...

Hi, Kitrona--those particular examples are pretty rare things (as opposed to people trying too hard to squeeze past where they won't fit--that's common). The couple of people hurrying past me to the elevator were college students, probably in a hurry to get to class--though they probably could have taken the stairs right next to the elevator. I think other people on elevators panic and aren't sure what they'd do if I actually get on. People spinning me around isn't intentional, but if they're trying to get past, sometimes they'll grab on to the back of my seat, which isn't a good idea--I don't lock my seat in place so that I can swivel as I need (I use a scooter). I think it startles them as much as it does me--but it also wrenches the muscles in my back. Since most people aren't really directly rude and actually do show some basic manners around wheelchairs, I think most people need to worry less. In general, people are probably "safe" if they don't touch a wheelchair without being asked to--and then conversation can be about normal everyday topics.