Asks the Independent. Er . . . Yes.
I’ve been a wheelchair user for 29 years. Occasionally, at first, full-time these days. I’m typing this from my chair. Which isn’t really germane – just saying.
Let me say, up front, that I have no objection to able-bodied people offering unlooked-for help – just so long as they accept that it’s my right to politely decline that help if I don’t need it (sometimes I do need it, we probably all do occasionally, if we’re honest with ourselves). I also reserve the right to tell them to fuck right off if they become insistent.
I treat offers of help with the same good faith in which I assume they are made, and if I decline I do so politely. But I expect that to be the end of the matter – get pushy at your own risk.
It does anger me, though, when, after I’ve given a polite “No, thanks, I’m fine,” in response to their offer, they then insist in “helping”. Folks, you’re not helping, you’re just in the way.
For example, I’ve devised a very good system for carrying shopping on a powerchair or a manual chair, though since my legs turned on me I get my food delivered as the system puts pressure on my legs (this day I had my manual chair – I was still a biker, the chair rode in the sidecar). Anyway, in my local Sainsbury’s, I was at the checkout when up pops a member of staff.
“Can I help you?”
“No, I’m fine, thanks.”
“Well,” brightly grinning, bordering on deranged, and squatting directly in front of me, “I’m going to help you anyway!”
“No, you’re not. If you touch me it will be assault and I won’t be responsible for the consequences! Please go away.” (I paraphrase somewhat – expletives omitted…)
Which, grudgingly, she did – but she hovered, just in case. Just in case of what I have no idea. I’d managed to navigate the entire store without difficulty, what was so special about the checkout?
Anyway, I successfully put my groceries on the belt, retrieved them at the other end (after having asked the operator to stop the belt that delivered them to me so it didn’t carry my stuff out of reach (I could retrieve the items fast enough that no-one was held up), and NOT to put my goodies out of reach in the first place (both perennial, if relatively minor, problems, fixable with proper staff training as, indeed, was the original one but, Sainsbury’s – staff training is your job, not mine).
So here’s a thought. When a disabled person, whether in a wheelchair or not, declines your offer of help, don’t just think to yourself “Miserable bugger!” and flounce off (and NEVER impose yourself where you’re not invited – many of us greatly value our independence), ask yourself a simple question instead – how do you think we cope when no-one is around? Not everyone has a carer. Many, like me, live alone. To be honest, I do need a carer, badly, but I know that if I had one, it would be a recipe for conflict. I value my independence too much, probably to my own detriment, I have to admit.
Here’s another thought, for Sainsbury’s and other organisations who interact with disabled people on a regular basis – if you want to know what we need, ask us. Most, I suspect, will happily tell you, but don’t be surprised if some are angry – it’s probably justified.
Before I wind this up, there’s been a popular theme on Twitter recently which stresses that being a wheelchair jockey does NOT mean that we are incapable of standing or, even, walking a little. In my own case, I can do both, but doing so is excruciatingly painful for a variety of reasons, primarily bilateral lymphoedema – both legs are grossly swollen, the right has a huge ulcer and the left has an enormous leak which, in time, might become an ulcer. Both, as a result, are missing a huge amount of skin, exposing raw flesh which is immensely painful. I take more morphine than, I’m told, the average cancer patient, and I’m still wiped out by pain** much of the time, especially after a dressing change which, right now, happens every day. Being on my feet is positively dangerous, too, as the risk of an injurious fall is very high (I’m still suffering from the effects of a fall a few days ago, getting out of my manual chair in my own home). So I use wheelchairs for about 18 hours a day on average.
**Pain is an intensely personal experience. A condition that one person finds devastating can be, to another person, a relatively minor inconvenience. And a lot depends on the mindset of the individuals concerned. In either case, it’s the actual experience of the pain that is the individual’s reality, and it’s that which needs to be treated.
I have a manual chair for use at home, for hospital visits and – if I ever have a social life again – for going out. A powerchair for everything else. As I’m currently housebound and have been for a couple of years, “everything else” tends to be trips to the bin room with crap, or to the laundry room with my washing (being unable to use my legs to push them open, I find negotiating doors in my manual chair to be well nigh impossible).
I also have another manual chair, a rigid Quickie Ti, to which I’ve fitted a FreeWheel adaptation which I hope will see some outdoor use when the weather perks up.
Watch this space…