A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Monday, 11 August 2008

Wheely varied reactions

I have a powered wheelchair (which I've named Taz) for those times when my breathing is on it's way down and I haven't got the puff to walk, or when I'm just out of hospital and have very little physical energy, but still need to get out and about. I don't want to use it all the time, because I want to be able to walk and make use of my legs when I'm able to, but it is ever so useful to have Taz for those times when I need it. Most of my friends are now used to it, and some of the folk at church have seen me out and about in it too, although not all that often. As most of my family don't live in the area they haven't really seen me use Taz, but they know that I have it and they're used to seeing it in my flat when they visit. It's taken a bit for them to get used to the idea of my needing it, but no more than me ... in fact, when I first got it sometime last year I felt very self-conscious when I was out in it, and still am to a degree when I'm in my local area. This isn't because of any adverse response I've had, but because I know that I confuse my neighbours by sometimes needing to use the powered wheelchair, but sometimes being fine to walk about. Actually, it can be quite amusing at times seeing the confusion on their faces, but if they don't ask why I sometimes use it and why I sometimes don't then I'm not going to go out of my way to explain - I have no obligation to, after all.

Although it's tremendously helpful to have Taz during those times when I need to use it, it has taken a lot to get my head around the idea of it and to lose most of my self-consciousness about it. People do look though, and it's quite surprising how varied their reactions can be, both in people I know and those I don't. The important people in my life know why I have Taz, but it does seem to surprise some who know the reasons for it when they see me using it ... it feels to me a little as though my identity has changed for them, because I suppose it makes my disability kind of visible. There are those who know me, know that I have Taz, and have seen me use it, but not frequently enough for them necessarily to remember that I have an electric wheelchair until they are reminded by seeing me in it again, and each time that happens I see something not quite discernible fleetingly pass through their mind.

On a few occasions I have gone to church in Taz. The first time I did this felt like a really big deal to me, I think because it meant a lot of people who knew me on different levels 'seeing' my disability, which I don't like to think of as being my identity, but which I think is a part of my identity in a lot of people's minds. Anyway, because I can't actually fit the electric wheelchair into the car then I only go in it to church when it's a nice day/evening and I have the time to trundle my way there and back. Most of the time I can manage church by driving there anyway, as there's usually little need to walk far once there, so it's a while since I was at church in Taz. In fact I didn't even use Taz for church last weekend, despite only being a few days out of hospital, but all the same, after the service, one member of the congregation asked me how my chair was. It took me a little while to work out what she asking after, and I wondered if I'd recently made some passing comment about thinking about getting a new armchair or something (which I haven't been thinking about so wouldn't make sense to me either). The person who asked is one of those I know relatively well, but she hasn't seen me in Taz all that often, although I did bump into her (not literally) while I was in it shortly before my most recent hospital admission. All the same, I thought it rather an odd question and, after she'd explained that she meant my electric wheelchair, I wasn't all that sure how to answer. I mean, what do you say when someone asks after a piece of mobility equipment you happen to need to use at times? It's a little like asking the gentleman down the road how his walking stick is, or the woman who lives round the corner if her zimmer frame is okay. It's not that I mind ... it just seems a little bizarre.

The strangest reaction I've had to date was last week when I was in town. I was trundling up the main shopping street in the city centre, half watching where I was going whilst also gazing into shop windows rather mindlessly. I hadn't gone all that far up the road when I woman I'd never seen before, and who was sitting on one of the benches in the street (it's a pedestrianised street), caught my eye and said 'Excuse me.' I stopped beside her, wondering what she wanted, and she said, 'That's a nice little chair. Where did you get it?' A little confused by this random interjection into my thoughts I replied that it was from the NHS, at which she smiled and asked, 'It wasn't from the Freeman, was it?' Still confused, I answered that I had indeed got it from the Freeman Hospital, and then waited for her response. There wasn't one, so I trundled away again, still rather confused by the short interaction, and wondered if this slightly strange woman was just lonely and in need of some human contact, or if this had been some good deed to talk to a 'poor disabled person'. There was nothing about the interaction that made me feel angry or particularly patronised (well, perhaps a little patronised, if I'm honest, but not much), it just felt odd that a random, apparently able-bodied stranger should stop me in my tracks to ask about the origins of my electric wheelchair.

On the whole though, I'd much rather that people ask me if they have questions about my health/disability. I don't have any obligation to answer, and won't necessarily give all the details, but I'd much prefer people ask questions so they can form accurate thoughts and ideas about my situation, rather than make assumptions or be judgmental. I may have mentioned this next thing before, but when I was in the supermarket a couple of months ago a young child was staring at me as I trundled around the fruit and veg section. At one point I was right next to her and had to ask her to move slightly to one side so that I get past her. In all her inquisitive innocence she asked me why I was in the chair. I didn't mind the question at all, and think that children should be free to ask such questions so long as they are aware that not everyone will want to answer them. Her mother, though, was more than taken-aback by her daughter's question and began to reprimand the child. I said that I didn't mind and I took a few minutes to explain that my legs work fine, but that my lungs don't always work very well, which means that I can't always breathe enough to walk. She said that I looked like I could breathe okay, so I told her that while I was sitting down at the moment then my breathing wasn't too bad, but if I tried to walk then I'd get very out of breath and would be quite poorly. The little girl looked a little thoughtful, perhaps slightly confused (I'm guessing she hasn't come across many people with lung disease before), but also satisfied with the answers I'd given. However, her mother still looked cross with her daughter, so I smiled at her, told her not to worry, and said that I prefer if people ask me their questions so not to be angry with the little girl. The mother looked very confused, and I'm not convinced that the child didn't get told off anyway, but it's only through education, and through personal experience relayed to others, that prejudices (and perhaps fear) will be overcome.


Anonymous said...

I agree with the rather being asked, there is no obligation to answer, but a little education can go a long way :)

As for equating your disability with your identity, it's not something that I do personally. I'm a bit rubbish in that without constant reminders, I tend to shift that kind of information to a very background position in my mind. So, my friend Charlie who has MS is my friend, who I tend to forget has a condition unless that information is needed at the time.

Sorry, rambling there :) and I have to ask, is Taz decorated?

BeckyG said...

I think it's good that you don't immediate use Charlie's MS as her identity. Disability is bound to contribute to ones identity, as all of one's life experiences do, but it is not the entirity of a person. It's great that Charlie is first and foremost an entire person to you, and that you only call upon the fact of her MS when a situation needs it. I wouldn't say that's being 'a bit rubbish', but rather commendable and heart-warming.

As for Taz, I have a picture of the cartoon character Taz stuck on the seat rest so that you see if either when I'm not using it or when I lean forward. I also have a couple of stickers on the back, one of which says, '0-60 in 15 minutes', and the other, 'Chaos. Panic. Disorder. My work here is done.' I want to get a sticker made for my unpowered wheelchair that says, 'Are you trying to push me around?' ;oP