Waspish Wednesday: Yes! I DO Know How to Operate My Powerchair!

I’ve decided to start a new series, called “Waspish Wednesday.” These will be short posts that will tell readers that, “Hey, that thing you do/say because I’m disabled? You can stop now.”

Today, I went to the doctor. Not to put too fine a point on it, but I hate this doctor. If I never had to see him again, it would be too soon. He’s the only person on the planet I’ve ever threatened with an ADA lawsuit (and I meant it, too).

However, this particular thing that he said, and that he has said every single time I’ve seen him in the decade I’ve gone to his office using a powerchair, is — sadly — not unique to him. It is ubiquitous in medical settings: doctor’s offices, hospitals, even occasionally home visits (VNA or home draw programs), etcetera.

Here are the people I happen to remember who have said this to me: PCPs, surgeons, interventional radiologists, MRI technicians, nurses (of all varieties), office staff/clerical, phlebotomists/lab technicians, and every specialist imaginable.

What happens is this. We are about to leave or enter an office or corridor, or we need to reposition ourselves in an exam room, operating theater, or blood draw cubicle, and I move.

“Hey!” They say, in a tone that is half amazement and half amusement. . . .

  • “You really know how to corner in that thing!”
  • “You really know how to move in that thing!”
  • “You’re really good at that!”
  • “Wow! You can turn on a dime!”

They are jocular and seem pleased that they have been able to serve up this compliment, that they have noticed this rare phenomenon and can point it out to me.

What I want to say, but never do is, “Yes! Isn’t it amazing that I know how to operate the mobility device that I’ve used everyday, all day, for several years? This powerchair that I use inside my non-wheelchair accessible house, everyday, for years?”

Or, I could say (but don’t), “Actually, I’m pretty sucky at it. You should see the inside of my house, where every doorway is splintered and chipped, where every tight corner has had the plaster dinged all to hell, where I took the strip of molding off the bathroom door (and we never even bothered to put it back), and where the plates of protective Plexiglas are splintered where I hit them!”

Or, I could say (but don’t), “Yes! And look at you! You are walking! You really know how to ambulate! You can really move on those feet! You sure know how to work those legs! Good for you!”

What I say when I am in a really good mood or I really like the person, is, “Thank you.”

Otherwise, what I say is (nothing).

I have not been happy with either of these options. So, now I’m saying something else:

Hey! General public! Please stop acting like a disabled person’s ability to use the mobility equipment we use every day to get around is a big freaking deal! Or we might just start telling you, in a congratulatory and avuncular manner, how impressed we are that you know how to operate your shoes.

Thank you.

– Sharon, the muse of Gadget (I looooved to run next to the chair), and Barnum (SDiT?)

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14 Responses to “Waspish Wednesday: Yes! I DO Know How to Operate My Powerchair!”


  1. 1 Carol Birdwell April 27, 2011 at 9:46 pm

    Awww, a true smart ass is born, never learned, lol! You must tire of stupid comments, but on the bright side when I’m in a ‘mood’ and was in a store with Lily in the past and mentioned my particular mental disorders that gave me the priviledge of having a ‘doggy in the store’, they back away…slowly. 😉

  2. 2 kendra April 27, 2011 at 9:49 pm

    ahh, sharon–LOL and almost in tears at same time.
    deeply appreciate your awareness and ability to express it in WORDS and get it into print.

    i’m new to wheelchair, after over 2 year of trying to find manual wheelchair i could tolerate (fabric odor make me sick–aired out for 2 years. then brought in house and the rubber wheel odor make me sick. back out to garage.) but also have no strength in hands arms to push wheels. finally bought my own transport chair with no-smell! yippee, well, very short-lived. realized i am too weak to push even this light transport chair with my feet. so this week, getting eval for powerchair. sigh.

    are you willing-able to share insights into how to find powerchair that you can live with when have MCS? if you prefer, send by private email.

    with profound gratitude & curiousity,
    kendra

  3. 4 Sharon Wachsler April 27, 2011 at 11:02 pm

    Ahh, Kendra, I feel your pain. I didn’t know you had MCS. I’m sorry to hear that.
    This is a long and complex problem.
    I, too, started with a manual chair which I wasn’t really able to use, got a lighter-weight one, still couldn’t really use it (even with help from dog power), etc. I have other CFIDS/MCS friends who went through the same thing. It seems to be a common problem, unfortunately.
    The only chair I ever got that didn’t require outgassing time was a used 4-wheel scooter, and the situation was a total luck-out. The previous owner had only used it once and then died. It had been in his garage for many months (outgassing), where they kept no cars, didn’t smoke, didn’t have laundry machines, etc., and his son, who sold it to me, was good friends with my friend with severe MCS, so he understood about what was safe or not.
    Otherwise, what I’ve had to do is get the chair, and then put it in a room I never or rarely use (an outgassing room, a mudroom, etc.), and then let it sit for several months. Since heat, sun, and air speed up the outgassing process, when I got my most recent indoor chair, every day that it was warm and sunny outside, we put it out to sit in the sunniest spot in the yard in the morning, and brought it in before evening. I think that helped a lot. The worst part was the vinyl covering of the chair and the foam inside the vinyl. The wheels outgassed faster. I know one MCSer who was able to use a chair from the same company right away, so it really depends. I think, if it’s possible, fabric covers are better, because vinyl is so toxic. (My scooter had a fabric-covered seat.) IME, the wheels just need time, and I haven’t experienced much difference amongst different types of wheels or devices.
    Obviously, in all these situations, it was important that I had a chair I could use until the “new” one was workable. I ran into problems when I waited too long to get my newest Medicare chair, and I couldn’t use it for several months, and the wheel motor on the old one (which was my daily use chair) crapped out. M’care wouldn’t pay for the old chair; they had already bought me a new one. If I didn’t want to be stranded in bed all day, I had to pay out-of-pocket for a new wheel motor. That sucked. Being disabled is expensive, and being disabled with MCS in addition to other disabilities really throws a monkey into the wrench ointment (or whatever).
    I wish I had better news for you.
    Actually, my friend Karyn, who sometimes reads my blog, is a lifelong chair user, and developed MCS about 10 years ago, might have some tips for you. She is way more chair-savvy than I am. I’ll ask her to read these comments.

  4. 5 patti brehler April 27, 2011 at 11:07 pm

    Great post…keep them coming! (Although I wonder if any of them would have heard you if you DID say what you wanted.)

  5. 6 Sharon Wachsler April 27, 2011 at 11:21 pm

    Patti,
    Thanks! Actually I said quite a few things during the actual appointment that I wonder if he took in or not. I intimated that his negligent dismissal of my illness almost killed me. He thinks very highly of himself and has incredible defense mechanisms, so I doubt he took that in at all. Story for another post. . . .

  6. 8 Sharon Wachsler April 27, 2011 at 11:23 pm

    I think my parents can vouch for me having been a smart ass from the beginning. I have worked long and hard to curb my smart-assery, but I can only go so long without it re-emerging.

  7. 9 Kat April 28, 2011 at 1:18 am

    Jeez, what a dummy!

    Although I can almost (almost) see the cornering thing. You know, like how people talk about their cars cornering on a dime.

    When my friend got a broken leg in the car accident we were in, I spent the summer taking her everywhere. In a manual wheelchair. You should have seen all the bruises I got.

    I really appreciated when someone would hold a door for us, as I was still struggling to learn how to navigate with her and injured myself from the accident. (And I think it was pretty obvious we were struggling.) Too often a waiting room full of people would pretend to ignore us while we struggled out the door.

    That was the summer I learned that wheelchair-accessible doesn’t equal wheelchair-friendly.

  8. 10 Karyn April 28, 2011 at 11:38 am

    Hi Kendra, I have MCS and rely on power wheelchairs with tilt systems for my mobility needs. I learned a lot in regards to this the hard way. Keep in mind every MCSer is different but this is what works for me.
    I won’t accept chairs with captain seats (all vinyl covered foam like a scooter) I have skin issues but use cushions from supracor.com These detox easily are washable and covers can be replaced with pillow case until they detox. They are covered by insurance
    I use plastic armrest pads instead of vinyl or rubber now that I found them- maybe not as comfy but certainly better for MCS. One of the best things for new tires/ casters/ wheels is to run the chair around your town or city HARD. It doesn’t get rid of all the smell only time does that but it seems to remove the sheen that is so much more smelly IMO. I opt to buy my own replacement tires online when I can afford to so I can detox them and we either change ourselves or I swap with the vender so next time its free for me via insurance paid tires.
    Honestly as Sharon said it takes time for a lot to detox but a lot can be wiped down with super clean, vinegar, vodka (dont laugh) to help process
    My last insured chair I got after both my regular insured chair died AND my backup died because the vender took a year to get me my chair with 10 months of that being them sitting on the paperwork not submitting it- there needs to be a law against that one. I am wheelchair bound so had no real option but to use the chair. My careworker was great though. We put several towels over the back- that was a nightmare because the vender totally disregarded my MCS and did what he wanted- I have since rebuilt that back and its awesome!
    We covered the armrest pads with foil and then covered them in several layers of toweling which I pinned in place. While it charged in my detox room, I uncovered them and the back for airing out. The joystick I kept covered with a detoxed plastic bag for veggies from grocery store when in use. It was uncovered to charge.
    The main key is that if they do things you say is really not OK for your function, don’t sign the paperwork until that chair meets your needs. This isn’t for MCS reasons unfortunately as you do have to sign under a short time frame but for aspects of the chair that aren’t comfortable or make you feel unbalanced or whatever. They have to fix this stuff especially when they chose against what works for you and you told them so much when they evaluated you. I did not know that and signed.
    If you want more insights which I am sure I have left out, ask Sharon for my email she can provide it to you

  9. 11 Sharon Wachsler April 28, 2011 at 12:21 pm

    Hey Kat,

    Yeah, the “car jokes” are another theme. “Have you got a license for that?” and “There are speed limits, you know!” — both said jokingly, and with seeming certainty of having come up with something new and clever — are comments all pchair users have heard.

    As to the situation with you and your friend, that sounds really miserable. I have been in that type of situation, too, and it always astonishes me how people can offer or foist help on me when I don’t need it, but fail to offer it when I do. I have to say that I get more of the former than the latter since I became a pchair user, but back when I was trying to make do with manual chairs, or staggering along on foot with my oxygen tank and dealing with heavy doors, I would sometimes try to literally wave people down for help, or call to them, and have them fail to respond.

    Really, it seems like common sense to me (I guess a misnomer, because if it was common sense, it wouldn’t be so uncommon) that if someone — anyone, whether they appear to be disabled or not — APPEARS to be struggling in some way (with a heavy door, or an unwieldy chair, or a ripped grocery bag), the kind and polite thing to do is to say, “Would you like some assistance?” And if the person says, “Yes!” You ask them what they need or you just do whatever obvious thing seems to need doing.

    And if they say, “No,” you nod and go on your merry way.

    Betsy works for an elderly stroke survivor, and she is always covered with bruises from dealing with her manual chair. Her employer now has a powerchair but doesn’t want to use it. I wish she would, not only for her sake — more freedom and independence — but for the sake of Betsy’s poor body!

  10. 12 Ashley April 28, 2011 at 2:18 pm

    Oh those comments. Sometimes my mouth gets away with me before my manners can catch up and I say “well, I’ve only been doing it for 2 years now.” While I usually feel bad later, those people don’t say anything about my maneuvering again.
    There is one time I don’t mind as much and that is when they’ve just been run over by someone who doesn’t watch out for people around them and the nurse says (usually in a tone of immense relief) “You’re good at that!” while rubbing their newest bruise. Of course, those people who “drive” like that are a whole other rant, especially when I have to save my self and my dog from being run over/crashed in to

  11. 13 MiMo April 28, 2011 at 11:09 pm

    How some people manage to be surprised that you are competent at something you do every damn day is beyond me!

    Although, I have to say I laughed particularly at the idea of you saying something back about being good at operating their shoes, since I, personally (mostly TAB), am not actually all that good at operating my shoes! 😉
    (my multiply-sprained ankles can testify to that!)


  1. 1 May Disability Blog Carnival « Astrid's Journal Trackback on May 27, 2011 at 10:08 am
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