Thursday, October 29, 2009

New Podlett, New Doctor

My new fleece Podlett came in the mail today--the first thing I've bought for myself since I can remember (before the layoff; reimbursed medical products excepted). The Podlett can be used as a wheelchair blanket and there's a pocket for your feet that comes up behind the knees. No more hypothermia on campouts and fall events and getting blankets muddy and grassy as they fall off my lap, while the back of my legs and my feet still freeze. I'll still have to wear thermal underwear when it's really cold. I love it! You could probably also fit another lightweight layer/blanket inside it if you needed.
I bought this with our ebay money--maybe I shouldn't have, but I would have to stay at home a lot otherwise. The scooter wheels do not like blankets, and I can't steer and hold one in place. It will be used--at home too. On last year's annual campout I got hypothermia quickly and could not get completely warm the whole weekend. This time, I sweat in my long johns on the way down rather than waiting to change, and the Podlett will be on immediately and can be used in the tent. My husband will also go down earlier with someone else to set up the tent and start a fire.

The new doctor/internist: I like her a lot. The door in her office was hung on the wrong end of the door frame so it's *very* difficult to get in and out of the patient room because it can't be opened all the way--wondering if I should suggest that this be moved to the other part of the door frame. Yes, we called first.

High pain/going. I will catch up on emails to several of you soon.

Wednesday, October 28, 2009

On Disability and Rudeness

I feel like I am Sappho without the poetry, writing in fragments. I'm adding to and posting several bits at once, though now I'm behind on correspondence! This is a piece that I started before my daughter came home ill from school a few weeks ago:

"Hands off me, creepy guy at Starbucks, before I karate chop your man bits," a female friend of mine wrote recently, recollecting a moment with an overly flirtatious stranger. She only thought this and did not say anything in person; women have often been taught to be polite to people who are invading our space or our privacy. Women who are disabled often experience additional sticky terrain and unwanted confrontations. Men with disabilities also experience many of the same difficult interactions.

Putting aside gender for a moment, when disability is involved, the rudeness of others is often deflected back onto us--we are considered rude for not complying with the rude behaviors of others or for requesting our rights. I've seen myself expected to answer personal questions that I'd rather not answer--in front of family members. I know that not answering, no matter how gently I aver, would be taken as rude; it's a break in the back-and-forth of conversation, a refusal to interact. Assertion can be double-edged--if we speak up for ourselves, we make it less likely for that person to do the same to others, but this does not help interactions. Even though Miss Manners does tell people not to ask questions or invade our space, they do. In a nutshell, we are considered the rude ones for not answering nosy questions, for defending our personal space or bodily autonomy, or for making requests for accommodation for others. Sometimes we are considered rude for existing, for being in the way, our bodies regarded as physical obstacles, nevermind that people who use grocery carts or baby strollers, also assistive devices, occupy the same space.

Take the examples of Wheelie Catholic, who has been repeatedly rammed into with a grocery cart because someone is annoyed with her existence and Laurie Clements Lambeth, a poet with multiple sclerosis who must claim her space in the store. And Katja at Broken Clay, who was recently denied a comfortable theater seat by someone reading the signage so strictly that she would not move over one seat for Katja and her husband. By refusing to move because Katja did not state her requests "properly" and did not give the full explanation requested, this woman was able to see her own act of unkindness as righteous and could ignore the physical and social discomfort of another person without guilt or a sense of wrongdoing.

I don't understand why kindness goes away, why we are treated as lesser or our lives seen as not worthwhile. In a more extreme example, when my grandfather died, within an hour or two a stream of visitors showed up to my grandparents' home. So many people said that he was in a better place, which accorded with my grandmother's beliefs but isn't much comfort during immediate grief. But they also said that he was suffering so much, had suffered so much, had been so ill and so housebound, and now that he's better off. They said this in front of me. It made me feel like they thought I should die. I don't agree with this rudeness--it was not comforting at all. He wanted to live and had even changed his mind about his advance directives. He wanted to live! Even at the end, he preferred life as long as he could, despite pain that made him restless and made him grimace and close his eyes tight. What a view of disability people have. The church woman who leaned over his bed, telling him to "let go, just let go"--that wasn't her place. He was disabled. I am disabled. People said he never complained or mentioned his pain. They just didn't listen. They don't listen to us.

How do we protect ourselves without obscuring our point? How do we respond to others--or not respond to them, without becoming doormats or being labeled as bitches? I don't have the answer, only the thought, again, that others project their rudeness onto us if we don't accept what they say.

Denied, A New Book

The photos in the short book Denied (linked below and discovered in New Mobility) show the life-changing effects of good versus poor wheelchair seating and explain the Medicare in-home restriction, which insurance companies also adopt:

See the text of HR 3184 at:

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.

Sunday, October 4, 2009

Grandfather Passed Away

My grandfather passed away this morning at 11:00 with as many family members who could get there quickly enough there--I rubbed his head and Grandma and my aunt held him while my uncle and church members said prayers and words of encouragement. The hospice workers were wonderful.