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The Wheelchair Choice

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lilwatchergirl | 08:52 UK time, Tuesday, 21 August 2007

I'm a part-time wheelchair user. I make a conscious choice over whether to use my wheelchair, not only every day but every time I leave the house (I have other 'mobility-friendly habits' for indoors, mostly because my flat is the size of a large cupboard). This choice tends to be based around whether my mobility and independence would be best served by a) using my old, second-hand and rapidly falling apart, but otherwise very useful powerchair, b) being pushed around in a massive but more portable NHS-standard manual by my Girl, or c) walking the very variable distances that are still possible if I have a stick for balance and support.

There are, of course, serious barriers and problems that come with choices a) and b), as you'd expect. Not least of these is the battle I'm waging with my local council over a small access adaptation to my home that they're currently refusing to make (as anyone who reads my blog will know, as it's quite literally all I talk about these days. More on that here another time, I've no doubt). Transport, shopping, leisure activities etc are all a lot more difficult from a seated position, since the world is not designed for people who are effectively three feet tall and can't do steps. But the very fact that I even have the chance to worry about lack of access to such things, instead of having to sit at home waiting for other people to bring me news of the outside world, is surely a positive thing.

Which is why I find people's attitudes extremely interesting, when it comes to The Wheelchair Choice. I'm not talking about the hordes of oblivious strangers who regularly step out in front of me because they're incapable of looking down, or who are depressingly patronising about offering me 'a push' (in my powered wheelchair) when I'm just waiting for the lights to change at pedestrian crossings. No, I mean people who know me. You'd expect my friends and family to be pleased that I can once again, after nearly a year of very serious illness, complain about how very bored I am by my intense lack of social life, instead of by being unable to leave the house. And of course, most of my best friends have been fine about it, in the same way as they were nonplussed when I started going out with a girl, or when they first found out that I like to go to church every Sunday (OK, so they're still not quite sure what that one's about). An awful lot of people have surprised me, though. Even people who I thought knew me really well have questioned how much I really 'need' the chair (I want to answer "And how much do you really *need* a flushing toilet?" but I'm just not nasty enough), or whether it wouldn't be better for me to try and 'keep going' with my stick for as long as possible (because it's just so much fun to collapse in pain and be entirely immobile for the next three days, all because you wanted to see how far you could really walk that morning). My neighbours have been confused by the fact that I can do some weeding in my garden - from a comfortably seated position - but still need to 'inconvenience' them by my use of a wheelchair (yes, I'm harping on about that adaptation again, I apologise). Even some close friends have worried about appearances, asking me not to stand up at all in the pub, in case other people accuse me of not needing the wheelchair (as if it's their problem what people think about me). Family have admitted their 'confusion' over the chair (what's confusing? It's a seat with wheels attached) and a few people have quite clearly stated - if only behind my back - that I use it more than I should for 'attention'. I'd like them to try out some of this attention for a few days and then tell me whether they like it. Being daily offered that push at the lights is not a particularly fun experience, people.

I think the problem here is society's perception of what a wheelchair signifies. We use phrases like 'wheelchair-bound' and 'confined to a wheelchair' that suggest that, rather than being something enabling and life-enhancing, it's a wholly negative experience. I was at a comedy club the other night (without my wheelchair, since it was, of course, up a large flight of stairs), where an otherwise very funny comic made a passing reference to a wheelchair that betrayed an attitude of 'your life is over' towards people with mobility impairments. While most medical professionals are now becoming increasingly supportive of my need for ways to increase my choices in getting around, I still find some of them very resistant to the idea. Some months ago, just as I was gaining enough independence to start leaving the house alone, my physiotherapist signed me off with the words "You must keep working harder, Naomi, because this is not normal. You may think it is, but it's not." What an encouraging thing to say to someone who's just discovering how to live a relatively active life again. If that's how medical people think, no wonder society thinks wheelchair users should be shoved out of sight where they can't offend anyone with their irritating negative choices.

I'm being interviewed today for a study into how people cope with changes in health and impairment, by the social policy research unit of a university. They'll be following me and my choices for about three years. I'm sitting here with my breakfast and a list of areas of life - education, employment, housing and so on. I am supposed to discuss ways in which I have been able to exercise choice in these areas since I developed a physical impairment. I'm struck not only by how I have had almost no choices in any of these areas since I became unwell, but also by how much I further reduce my choices by that daily, 'ultimate' choice I make - to use a wheelchair. And yet I continue to use it. Why? Because it's also the most empowering choice I've made since I became ill. It's allowed me indepedence, mobility, freedom, the opportunity to look for work again, and the chance to get some control back over my life. Am I pissed off by the limitations it places on my access, and by people's attitudes to it - to me when I'm using it - to the ways in which I choose to use it? Of course. It's more than worth it.

Which is why my favourite comment about wheelchairs and attitudes will always be that of my wonderful flatmate, upon hearing about my neighbour's negative comment regarding my Wheelchair Choice when I can still weed the garden. "It shouldn't even matter whether you choose to use the wheelchair because you just enjoy it more than walking. It's your choice." Well done on the Social Model thinking, Flatmate. If it enables me, I will wheel.

• Visit Through Myself and Back Again

Comments

I guess some people just have this mental equation that says something like this:

1. Having a disability is a horrible tragic thing that makes you, well, LESS than you were (cue, deeply sorrowful violin music)

2. Therefore, when faced with the possible idea of using a wheelchair or any other assistive device (e.g., a device to help you communicate if you can't talk on your own, etc), the correct response is to fight and NOT go gentle into the dark night of disability (cue, dramatic line of music)

3. So if you are in a wheelchair (or an assistive communication device in place of talking or whatever) this means you are automatically choosing to have (cue, dramatic gasp) A DISABILITY. Horrors. CHOOSING it instead of fighting it. (Cue, accusing tone) YOU AREN'T FOLLOWING THE SCRIPT! Just stop using the wheelchair (or other device) and you won't have a disability any more! Why isn't that so hard to understand?

*sigh*

Some Autistic people, apparently, can talk some of the time but other times need to use some form of assistive device (e.g, typing in a computer or whatever). And apparently that can confuse other, non-Autistic people no end. (Why do you need to use this? You were talking just fine this morning. You're just seeking attention. etc.) There have been occasional conversations about this sort of bizzare response from non-disabled, non-autistic people in the comments thread over at http://ballastexistenz.autistics.org, though I can't remember off hand exactly which topic threads now.

Deaf people who sometimes talk/sometimes not, or sometimes use an interpreter/sometimes not can sometimes confuse other people too, though from my own experience it's usually easier to explain in a way that hearing people will "get" than it is with Autistic part-time talkers/part time augmented communication users. For example, if it is clear that the other person hasn't understood my speech, that's one of the times I will tend to write something down (or use my interpreter to translate from sign to voice where relevant)--and there, it's usually pretty obvious why I made the switch, so no explanation is needed. People SEE the disability, whereas they don't "see" it for part time wheelchair users etc. where the rationale for each day to day (or hour to hour) choice is not as obvious to an external observer who doesn't know you and knows little to nothing about the various reasons why a person might choose a wheelchair in the first place where a choice exists.

Beautifully put.

For me it's a choice too (I have CFS). I use my wheelchair when I go out but not for every trip. If I know I have to walk or stand for longer than a few minutes at the moment a chair with wheels is required.

It's not about using a wheelchair for an easy life - it's about not making myself ill for the sake of "appearances".

It's still nerve wracking to stand up (I also have a back problem so stretching is good) and to walk from wheelchair to toilet or car or over tricky terrain for a minute or two.

Last time someone gawped at me my husband shouted "It's a miracle!" waving his arms in the air and pulling a dumfounded expression. Laughter is always a good tension breaker for me - I'm not bothered what effect it had on the gawpers.

I'm glad to have a choice. But in reality my choices are:

- never go anywhere
- go out and use a wheelchair
- go out without a chair and spend the next month recovering from a simple excursion

Not much of a choice really.

Once the people around me saw the difference using a chair made to my health by the end of a day out ... everyone was convinced that using a wheelchair for me is enabling not disabling.

  • 3.
  • At 02:54 PM on 21 Aug 2007, PG Monkey wrote:

Naomi, this is a hugely inspiring, positive post (as well as wonderfully written). Thank you. As someone who hopes to walk more, but is still at the stage of sometimes using a wheelchair, it's good to read the 'decision' about when to use which mobility aids put so eloquently and positively.

  • 4.
  • At 06:45 PM on 21 Aug 2007, Mhari wrote:

This really extends WAY beyond just the choice to use a wheelchair. I am disabled, I wear AFO's most of the time, although I can walk without them. By the end of a long day, sometimes I yearn to just grab my crutches to take some of the weight of a sore joint, but I don't because I am very perceived by friends and co-workers as 'non-disabled'. People don't get that what I do comes at a cost in pain, exertion and effort, because I'm good at making it look effortless. It's sort of nice to be 'away' because I feel much more comfortable doing whatever I need to do, and not worrying about what people who know me are thinking. For me, my 'assistive stuff' is what lets me do what I can. Without it I absolutely couldn't do my job, and be as active as I am.

I totally agree with the 'sense of humor' thing. It's caused some very funny moments, including when I've said 'Oh no, thats my twin sister, I'm the disabled one'.

T.C.

  • 5.
  • At 09:31 PM on 21 Aug 2007, Mike C wrote:

Council (OT) dalying your adaptation ?

read this recent Ombudsman report re. OT delays here
http://www.lgo.org.uk/socserv.htm

scroll down to
London Borough of Croydon (05/B/246)

The Local Govt. Ombudsman has, over the years, become more and more critical over adaptation delys - a complaint to them would surely be upheld

  • 6.
  • At 03:02 PM on 22 Aug 2007, Just a Girl wrote:

It is shocking the lengths we will go to sometimes, either to gain others' acceptance or avoid making them uncomfortable at our own expense.

Your writing about the choice to use a wheelchair when you need to (which only you can decide), is inspiring in many different contexts.

I completely understand where you are coming from. For me it's a case of "the more I do, the worse I am", so if I use my wheelchair a lot of the time, my walking gets better. But if I walk more than I ought, my pain gets bad and I need my wheelchair. This leads to confusion, since I feel a lot better in a chair and think "Maybe I'm a fraud! It hardly hurts!" - until the next time I think I can manage on crutches and spend the whole time popping pills and looking for somewhere to rest...

A friend recently said that my walking had improved and I said yes, that was because I used my wheelchair more often. That took a bit of explaining!

And this is before you consider the difference in perception. For some reason wheelchairs suggest permanent injury and elicit pity and talking down to you, but crutches suggest something temporary and strangers want to know what I've done and when I will be off them - but they talk to me as an equal because they can relate to injuries and crutches.

  • 8.
  • At 05:51 AM on 23 Aug 2007, wheelchairdancer wrote:

So well put. So well put.

WCD

"Even some close friends have worried about appearances" Well, that prompted raised eyebrows...

"You must keep working harder, Naomi, because this is not normal" - jaw hits floor.

"It shouldn't even matter whether you choose to use the wheelchair because you just enjoy it more than walking. It's your choice." HURRAY for friends who understand.

Great post.

Thanks for writing this -- your willingness to speak helps others.

I've been a part-time chair user for 14 years. At first I was afraid that other wheelchair users would think I was a fraud. On my third paratransit (dial-a-ride) trip, we stopped by the State Capitol to pick up someone who worked for the legislature. He wheeled out in a shiny manual chair, the driver tied him down, and the worker promptly stood up to adjust his coat. That relaxed me considerably.

A little while later I got up the nerve to chat up some of the 'old-timers' at the local independent living center. One with CP explained how he'd grown up in a 2 story house with his bedroom upstairs; the parents expected him to walk up and down every day. "Put your PT to work!" He said, "Why waste my energy on that when I'd rather be busy advocating?" He uses a power chair mostly, and a manual at home.

  • 11.
  • At 08:03 PM on 07 Jan 2008, Jude wrote:

Hey I completely understand your wish to choose whether or not you use your chair as I make the same decision everyday too. I personally find it empowering to be in my chair because I can move much faster. I also love the option of walking and using my stick which is a LOT easier at gigs. :)
I can't figure out why people who haven't been in this situation try to make the decision for you or why they can't understand that using a chair can be a lot better than walking.
I'm so glad I'm not the only person who has these opinions. Since my amputation which, in a way disabled me even more than I was, I have felt alot more able to get out and around and enjoy my life.
:)

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