I am the lucky owner of a fab new powered wheelchair. And my new trick is that I am an ambulatory wheelchair user.
That means, sometimes you'll see me sitting in my wheelchair, and sometimes you'll see me walking.
This causes a great deal of social awkwardness, consternation and even shock. People seem to think I'm leading a double life. So I'll explain how it works.
If you see my in my chair, thank you for your concern, but I have not just had an accident or broken any bones. And, thankfully, my condition is no worse than it has been for the past few years.
If you see me walking, I have not suddenly been graced by a miraculous recovery. I still have the same crappy chronic illness I've had for 30 years. Neither am I using my chair to get attention or to pretend to be more disabled than I am in order to get some kind of advantage over everyone else - like a parking spot or a free ride.
No. I use my powerchair in the same way people use their car - for greater freedom and extending their horizons. If you have a car, it doesn't mean you'll never walk anywhere, never cycle, or never get on a bus. It just means you have the luxury of choice and convenience.
Technically, I can walk. But because of energy impairment my walking range is very limited. My metabolic "battery" goes flat very quickly. So sometimes I'll do a short walk in the morning, say, (because a bit of walking is good for me and gives me a huge kick) but then I'll have used up my "charge" for the rest of the day, so if I get a crazy notion to go out again, say for a pint of milk, I'll use the powerchair. Also, my condition fluctuates, so when I'm having a bad patch, I can't walk outside at all. So the powerchair is the only way I'm able to leave the house independently.
It's really not that hard to fathom, is it? So why do people find it so unnerving to see me sometimes walking and sometimes wheeling? I've had stares and sniggers, social avoidance and on one occasion, outright hostility.
One reason may be unfamiliarity, hence the hashtag #AmbulatoryWheelchairUsersExist on Twitter. Most people with energy-limiting chronic illness like mine are stuck indoors. In fact, the reason you never saw me in a wheelchair before, if you live in my neighbourhood, was simply that I didn't have the luxury of using one. For years, I had no one to push me in a manual wheelchair, so there was no point in having one. And the wonderful powerchair I have now, with all the independence it gives me, was totally out of reach. Not only was it unaffordable but my home was inaccessible.
So if you're thinking I look tragic in my wheelchair, you couldn't be more wrong. The "tragic" part was being trapped indoors, invisible to the world, for years on end. Having the powerchair is liberation.
For 30 years I've been like a dog tied to a very short leash. With the powerchair, it's like being finally let off my leash. I've been able to "stroll" all the way round my local park for the first time. My mental geography of my city is expanding as I've been able to wander round its streets for the first time since I was 18. I can go to an art exhibition and not spend my time flopped on a bench. I can take my daughters to the local shopping mall to buy the basic stuff they need. I've been to social gatherings where I could mingle and enjoy talking to people without having to retreat to a seat in the corner of the room after 5 minutes because of my orthostatic intolerance. It is heaven.
The freedom is not limitless. The cognitive task of steering and navigating, and coping with noise and crowds also drain my "battery", albeit much less quickly than walking. On a bad day, I've lost the ability to steer or hold my head up while I was out. I've also had my eyes opened to the barriers that full-time wheelchair users come up against on a daily basis. I never realised that 90% of the shops and businesses in my local parade of shops are inaccessible due to a stupid great unnecessary step in the doorway. I never fully realised how badly designed pavements, and the simple lack of a dropped kerb, can make everyday life a misery.
But I wish everyone whose life is restricted by exhaustion and pain could have the same freedom as I do. The Chronic Illness Inclusion Project that I lead is about exploring how society disables us, sometimes as much as, or more than, disease itself. At around £2K, the cost of my powerchair is the first and obvious obstacle to freedom for most people. Then there's the huge issue of lack of accessible housing, for people who are full-time wheelchair users, let alone us part-timers. But there is also a massive cultural obstacle to overcome: the suspicion and ridicule that ambulatory wheelchair users are subjected to.
For decades, I was conditioned by doctors, and the family members who cared for me, that I should always walk as much as possible, til the point where I collapsed in the street, in order to demonstrate the right attitude to my chronic illness. The" right attitude" consisted of trying as hard as I could to behave normally, and not do anything that suggested my disability was a permanent fixture, like sitting in a wheelchair, because that would signify defeat, and no-one could cope with that.
I'm finally giving myself permission to decide when, and when not, to use a wheelchair, not based on other people's judgements or needs, but purely on the basis of making the most I possibly can out of my life. And my family are now pretty accepting. It's strangers and acquaintances who seem to find me challenging. People seem to have only two responses to seeing someone in a wheelchair: either pity, or if it appears you're not completely paralysed as they initially assumed, circumspection.
In the TV series Little Britain, Andy, who gets out of his wheelchair and up to mischief when his long-suffering carer Lou isn't looking, is lazy and shameless in his deceit. That is how some people look at me - as an imposter. Sometimes the disapproving stares are too much for me to cope with, and I stay indoors. But I'm learning to fight that impulse to stay hidden. It is their problem, not mine. I have no agency over my disease, but I can decide not to let ignorance and prejudice get me down.
That means, sometimes you'll see me sitting in my wheelchair, and sometimes you'll see me walking.
This causes a great deal of social awkwardness, consternation and even shock. People seem to think I'm leading a double life. So I'll explain how it works.
 |
| Little Britain's Andy and Lou sketch: making part-time wheelchair users into a laughing stock. |
If you see my in my chair, thank you for your concern, but I have not just had an accident or broken any bones. And, thankfully, my condition is no worse than it has been for the past few years.
If you see me walking, I have not suddenly been graced by a miraculous recovery. I still have the same crappy chronic illness I've had for 30 years. Neither am I using my chair to get attention or to pretend to be more disabled than I am in order to get some kind of advantage over everyone else - like a parking spot or a free ride.
No. I use my powerchair in the same way people use their car - for greater freedom and extending their horizons. If you have a car, it doesn't mean you'll never walk anywhere, never cycle, or never get on a bus. It just means you have the luxury of choice and convenience.
Technically, I can walk. But because of energy impairment my walking range is very limited. My metabolic "battery" goes flat very quickly. So sometimes I'll do a short walk in the morning, say, (because a bit of walking is good for me and gives me a huge kick) but then I'll have used up my "charge" for the rest of the day, so if I get a crazy notion to go out again, say for a pint of milk, I'll use the powerchair. Also, my condition fluctuates, so when I'm having a bad patch, I can't walk outside at all. So the powerchair is the only way I'm able to leave the house independently.
It's really not that hard to fathom, is it? So why do people find it so unnerving to see me sometimes walking and sometimes wheeling? I've had stares and sniggers, social avoidance and on one occasion, outright hostility.
One reason may be unfamiliarity, hence the hashtag #AmbulatoryWheelchairUsersExist on Twitter. Most people with energy-limiting chronic illness like mine are stuck indoors. In fact, the reason you never saw me in a wheelchair before, if you live in my neighbourhood, was simply that I didn't have the luxury of using one. For years, I had no one to push me in a manual wheelchair, so there was no point in having one. And the wonderful powerchair I have now, with all the independence it gives me, was totally out of reach. Not only was it unaffordable but my home was inaccessible.
So if you're thinking I look tragic in my wheelchair, you couldn't be more wrong. The "tragic" part was being trapped indoors, invisible to the world, for years on end. Having the powerchair is liberation.
For 30 years I've been like a dog tied to a very short leash. With the powerchair, it's like being finally let off my leash. I've been able to "stroll" all the way round my local park for the first time. My mental geography of my city is expanding as I've been able to wander round its streets for the first time since I was 18. I can go to an art exhibition and not spend my time flopped on a bench. I can take my daughters to the local shopping mall to buy the basic stuff they need. I've been to social gatherings where I could mingle and enjoy talking to people without having to retreat to a seat in the corner of the room after 5 minutes because of my orthostatic intolerance. It is heaven.
The freedom is not limitless. The cognitive task of steering and navigating, and coping with noise and crowds also drain my "battery", albeit much less quickly than walking. On a bad day, I've lost the ability to steer or hold my head up while I was out. I've also had my eyes opened to the barriers that full-time wheelchair users come up against on a daily basis. I never realised that 90% of the shops and businesses in my local parade of shops are inaccessible due to a stupid great unnecessary step in the doorway. I never fully realised how badly designed pavements, and the simple lack of a dropped kerb, can make everyday life a misery.
But I wish everyone whose life is restricted by exhaustion and pain could have the same freedom as I do. The Chronic Illness Inclusion Project that I lead is about exploring how society disables us, sometimes as much as, or more than, disease itself. At around £2K, the cost of my powerchair is the first and obvious obstacle to freedom for most people. Then there's the huge issue of lack of accessible housing, for people who are full-time wheelchair users, let alone us part-timers. But there is also a massive cultural obstacle to overcome: the suspicion and ridicule that ambulatory wheelchair users are subjected to.
For decades, I was conditioned by doctors, and the family members who cared for me, that I should always walk as much as possible, til the point where I collapsed in the street, in order to demonstrate the right attitude to my chronic illness. The" right attitude" consisted of trying as hard as I could to behave normally, and not do anything that suggested my disability was a permanent fixture, like sitting in a wheelchair, because that would signify defeat, and no-one could cope with that.
I'm finally giving myself permission to decide when, and when not, to use a wheelchair, not based on other people's judgements or needs, but purely on the basis of making the most I possibly can out of my life. And my family are now pretty accepting. It's strangers and acquaintances who seem to find me challenging. People seem to have only two responses to seeing someone in a wheelchair: either pity, or if it appears you're not completely paralysed as they initially assumed, circumspection.
In the TV series Little Britain, Andy, who gets out of his wheelchair and up to mischief when his long-suffering carer Lou isn't looking, is lazy and shameless in his deceit. That is how some people look at me - as an imposter. Sometimes the disapproving stares are too much for me to cope with, and I stay indoors. But I'm learning to fight that impulse to stay hidden. It is their problem, not mine. I have no agency over my disease, but I can decide not to let ignorance and prejudice get me down.
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