Wherever you are on this planet, as a disabled person, your quality of life is often dramatically affected by the consideration shown by those around you.
Nicking the parking spot of someone who might have a far greater need of it than you is just one example (depressingly common in some cities) of how many should try to take account more of certain things that disabled people have to have, in order to live their lives like anyone else’s.
Like many in similar situations to me, I detest being beholden to anyone for anything. But, whether it was help with food or dressing (I can’t handle knives or forks or buttons), or being able to park directly outside the newsagent, so that it takes me 10 minutes to buy a paper, not 20, I learned to swallow my pride, letting practical considerations prevail.
Despite this, I do try to do everything I can to help myself all the time. It therefore gets me rather upset when some able-bodied people do not show consideration.
This happens in London a lot of the time. Don’t get me wrong, I don’t want to have a go at Londoners (I am one). I’m having a go at the London pace of life and time poverty that removes much of the compassion for your fellow man.
Let’s compare this to Australia where I now live. I moved here because the built environment is much easier to contend with, as a wheelchair user, than in my home country and city. Having been here for nearly 6 months now, of this there is no doubt – and not only has it liberated me, but also both me and Justine (if I can’t go somewhere, we can’t go somewhere).
But it turns out that a more useable built environment is only half the reason that it is such a pleasure being here. It’s also marvelous being here as a wheelchair user because people with mobility issues are quite clearly more integrated into society.
This must be because of the far greater visibility and participation of older people here in everyday society – and because older people are much more likely to have a disability, there are disabled people wherever you go.
A buzzword in the disability world is inclusion. There isn’t 100 percent inclusion here yet, but there is a darn site more than in the UK.
The iBot is a miracle piece of technology that leaves most people in awe when they see it.
When it turns transformer-like from a standard wheelchair into a machine on two wheels at standing level, or when it climbs an unexpected flight of stairs in a friend’s home, most people begin to see the benefits to wheelchair users that such technology can bring.
I am lucky enough to own an iBot. I can’t get round the supermarket when I’m up on two wheels, because I am constantly besieged by questions from the fascinated and the curious.
It is an absolute tragedy that this miracle piece of human ingenuity is in danger of going the same way as Concorde. Consigned by bean counter accountants to the scrapheap of “great advances for humanity that were never given the chance to live”.
For those of you who haven’t been following the story, the makers of the iBot have been forced to cease production because insurance cover for it was unexpectedly withdrawn, making the iBot economically unviable.
We need to save the iBot for several reasons.
Firstly, as I said, it encourages human interaction, by operating at eye level. People are inquisitive and want to know more. Unfortunately, wheelchair users rarely have equal relationships with their counterparts. In the iBot, wheeling down the food aisles, they do.
Secondly, being up on two wheels adds personality to wheelchair users. Some people occasionally don’t see the wheelchair user. Instead, they just see the chair. The iBot, on two wheels, is dramatic. It adds drama that gives character to the user.
Thirdly, I’ve always found my iBot to be an icebreaker. It actually stimulates questions, even from the timid. People aren’t familiar with the technology. It doesn’t make sense, and they want to know more. As a result, some people start up conversations with iBot owners, when they would normally avoid talking to wheelchair users at all costs.
Fourthly, the iBot’s stair-climbing ability means that some people don’t have to leave their homes. Losing the ability to walk is challenging enough. The knock-on effect of that is seldom seen and often more devastating. Most wheelchair users are faced with leaving their homes if those homes have stairs. An iBot user doesn’t have to.
Finally, everything the iBot does allows its owner to get so much more out of life. Sadly, the productivity of many wheelchair users plummets once they find themselves unable to walk. And nowadays, because of war, we are seeing more young people with horrific injuries survive rather than die. Are we to confine them to the dust heap of an inactive and unproductive life, with years stretching ahead of them?
Here is an article that appeared in the UK’s Observer newspaper on 4th December, the day after the annual International Day of People with Disability
http://www.guardian.co.uk/commentisfree/2011/dec/04/ian-birrell-prejudice-against-disabled
It talks about the depressingly widespread “demonization” of disabled people – and a climate of hostility that is made more common in this era of global austerity.
Without doubt it is the case that possibly in the whole of Europe, and definitely in the UK, in recent times the tendency to label disabled people as cheats, scroungers and skivers has grown. It seems that if the intolerance of dishonest behaviour in society at large has doubled, then that attitude has risen tenfold towards disabled people.
Despite many well-intentioned people and disabled groups protesting at this unfairness, it’s almost like you can hear the voices still clamouring no one likes a cheat at the moment, let’s single out one of the most disadvantaged and vulnerable groups we can!
Unfortunately, language like the following does people with disability no favours at all:
“…[disabled people] remain locked in a state of virtual apartheid. They are forced to the fringes of society, ostracised from things the rest of us take for granted…”
This is 100% true. However this statement assumes that the public can feel this “apartheid” – the reality is that the majority of people, whoever they are, do not naturally have the empathy necessary to feel that “apartheid”. The statement lacks power because it doesn’t resonate with most peoples’ own lives.
Disabled people, more than anyone, should know this – after all, few people can understand what it’s like to be blind or in a wheelchair unless they have experienced it. It’s the same thing with understanding what it’s like to be a marginalised disabled person.
If we want disabled people to stop being seen as the scroungers of society, we need to stop knocking our heads against a brick wall, demanding more empathy, and instead use ways of communicating real emotion that resonates.
Three years ago, when we decided to move to Australia, to live near Sydney in Pearl Beach, Justine said “I’m buggered if we’re going to be in Pearl Beach in 2011, and unable to stroll along it hand in hand together!”
So began our search to find a powered wheelchair that could cope with sand, whether made wet by the sea, or powder dry by the sun. The problem is that all wheelchairs have extreme difficulty on most softer surfaces. In particular, they sink in all but the hardest sand – a problem made worse by all powered wheelchairs being heavy.
Months of research ended with dead ends, until two years ago we came across an eccentric and absurdly talented designer in Barcelona. He had created a kit for fitting a seat to a Segway (one of those gyroscopic “personal transporters” that people whizz around on, whilst standing).
Two main features of the finished product are a collapsible steering column (allowing people with restricted mobility like me to get on & off) and parking stands (keeping the device upright when getting on and off).
Since everyone’s disability is different, fitting the kit was in many ways like fitting a bespoke suit. After two trips to Barcelona and one by Josep to London, nine months later the conversion was born. When I first got it back to the UK last year, I tested it on the soft sand of Sunderland beach, using extra wide Segway tyres, especially made for off-road use.
3 years have gone by. Justine & I have realised an ambition which at first we thought was unattainable – to be on the soft sand of Pearl Beach together.
In this film, Justine as camerawoman is on the other side of the lens, but her & I are at the water’s edge together - somewhere we thought we’d never realistically be.
What I now call the WheelEasy Beachcomber overcomes many hassles for me. Thicker tyres for soft sand, but also all-purpose standard width tyres that go over anything but the softest sand. And really importantly:
1) unlike most heavy powered wheelchairs, this comparatively light machine folds down and fits into many unconverted cars
2) you don’t need to lug around heavy or bulky chargers – the charge lasts for ages, and if you’re running low, you just plug it in using a kettle lead for an hour or so while you’re having lunch
Best of all though, it’s perfectly suited to the outdoor Australian life, to which so many Aussie wheelchair users must feel excluded. In fact, in the three months that we’ve been here, so many members of the public have talked so passionately about how liberating this chair would be here, that I’m now exploring ways of bringing a mass market version to market.
I haven’t written this blog for a few months, because in July I moved to Australia. I won’t go into detail here about the enormous logistical task it was for my wife, myself (and our cat) to relocate to the other side of the world, but I will say hats off to Justine for bringing about something that few (if any) spouses of severely disabled individuals can ever have done.
The move to this country was precipitated by many things, but primarily by the fact that wheelchair users here encounter many fewer hassles in their daily lives than they do in my old home; London.
There are lots of reasons why the built environment is so much less of a headache for people who are reliant on wheels (including mothers with prams). A few of these are a wiser use of public money, less antiquated buildings, a more modern transport infrastructure, and simply more space (& consequently less tall thin buildings). When you combine this with better weather and less of a desire to spend time indoors, you can begin to appreciate one of the reasons why we found Australia a seductive option.
I say “we” because if the restaurant or café or cinema or shop has an access issue for me, it has an access issue for the person I am with. The environment I’m in restricts not only me, but also my companion.
Australia likes to think of itself as “the lucky country”. From the perspective of living life in a wheelchair, in many ways it is. However, in some ways the country lags far behind the one I have left. On the one hand, individuals generally display a more intrinsic good nature and thoughtfulness, on the other, attitudes towards disabled people could be interpreted as belittling – for example, Justine frequently gets asked the does Max take sugar? -type question.
Apart from attitudes, the State’s approach is markedly different from the UK’s. Sales tax (eg GST) is charged over here on nearly all goods that are needed as a result of being disabled. For example, I might need doorways widening in my house for my wheelchair to pass through comfortably. Here I would be charged GST. Is that fair? Another dramatic difference is that here there is very limited funding for disabled peoples’ needs in the workplace.
As with everything in life, it’s swings and roundabouts. “The lucky country” is only half the story.
