Results tagged “disability” from Looking Up

It's that time again

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Somehow the 1st of April came and went, without me taking to Looking Up and reflecting upon this date, the anniversary of my accident. This can probably be viewed as a good thing.

The reason I haven't commented on reaching 9 years post-injury is because I have been insanely busy writing on a very diverse range of subjects, all of which will become clear in the fullness of time. It's good to be busy, although it does mean that I have spent less time with the kids, and been somewhat preoccupied. Even my conversations with Penny have been largely filled with me waffling about work.

All for this is very mundane and makes me far from unusual as a man in his forties with a couple of kids, eking out a living as a freelancer. With the exception of my daily battle with chronic pain, I'd say it's all pretty normal.

Nine years ago, however, the idea of my life being normal ever again was inconceivable. My day to day was dominated by trying to master the simple everyday activities that most of us take for granted, and that would enable me to 'look after myself' again. I felt that I would eventually master this, but I couldn't really imagine a time when such things didn't dominate my life.

Now? Well I sleep badly, I spend too long in the bathroom, and I take slightly more medication than I would like to. Forty-something man, etc...

The way that I interact with the rest of the world has certainly changed. Living in a small town in Australia also means that I have lost my anonymity. With my appalling memory for names, and the Australian habit of using names immediately and often ("Tim? Hello, Tim. Well, Tim, this is your bank card." etc.) I spend the first few minutes of every conversation thinking,
"I know you. How do I know you? Are you a neighbour? Or is it a school thing? It could be a school thing. Do I know you? Maybe I don't know you. Have you just been told my name by someone else?"

As with any small town (and this is a pretty friendly one) every trip out to the shops inevitably involves several conversations. I have also had the inevitable curiosity voiced.
"How long have you been in a wheelchair, if you don't mind me asking?"
"What happened to you, if you don't mind me asking?"
Always tough ones, those. If I do mind, well it's too bloody late now.
And If I had been in a wheelchair all my life, how awkward would these questions become? What if there was no accident, no moment people could 'imagine for themselves' to help them understand?

I must confess to a little cruelty. A couple of weeks ago, I was in the bottle shop (off licence).
A 'bloke' came in as I was waiting to pay, and after a relatively short silence and his offering an "Alroight, mate," he asked me,
 "What happened to you, if you don't mind me asking?"
"Oh," says I, "I was just an idiot."
He looks uncomfortable.
"Yeah," I said, pointing to the sticking plaster bound around my thumb, "I was trying to open a shrink-wrapped pack of batteries with a craft knife and my hand slipped."
He smiled, nervously.
I paid and left.

A Frank conversation.

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It must be tedious to read posts on this blog apologising for the long gaps between missives, so I will move swiftly on. However, that's only after I make a cryptic reference to the forthcoming dramatic changes that are about to affect our lives. I will explain in due course, I promise.

On this occasion, I am merely here to draw you attention to my forthcoming appearance on BBC Radio 4 in the UK.  Tomorrow morning (27th Aug) at 9.30 am, I will be in conversation with the irrepressible Frank Gardner, discussing the adjustments one has to make after a serious life-changing injury.

I believe the interview will be available to listen to online after broadcast, so I will post a link as soon as I have the details.

The psychology of hope.

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Checking the balance

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So, first up: Happy New Year. Yes, it's been an age, and I have a number of excuses lined up, but none of them are particularly strong, so let's just move on, shall we?

I am pretty exhausted, mind, but that's the result of a weekend spent training up another new tranche of wheelchair skills instructors for the very lovely people at Back Up.

It's very satisfying to be able to contribute to the programme in this way, and nice to know that I can still make a decent fist of teaching. I used to train people in a professional capacity in a previous life. By this I mean before my spinal cord injury, not when I was stonemason to Hatshepsut in 1450 b.c. Because I wasn't).

But what I have found particularly interesting about the weekend just gone, is how passing on these skills makes me reflect on my feelings when I deliver a session. Many of the wheelchair skills sessions that I deliver tend to involve working with one or two individuals in general hospitals or other units. The participants are part of a widening group of individuals who have very little contact with any of the 13 specialist spinal centres in the UK.

There are a number of reasons why this might happen; it could be a lack of available beds at the time of injury; they may have complex other medical issues; it could even be the result of an attempt by their health trust to keep the funding in-house.

But whatever the reason, these people miss out on many essential components of rehabilitation, including knowledge and resources that can have a big effect on their ability to reach their full potential post-injury. Part of what we do is to offer a glimpse of what life might be like; the everyday, driving a car, going on holiday with the family, flying long-haul; just mentioning these things in conversation can have a real impact.

I used to find these encounters emotionally exhausting. Discussing the predicament other find themselves in can quickly shift the glass-half-full perspective that many of us rely on to get through the day. But with experience, I have found that I can sense the post session dip and keep myself busy and distracted. And for the last two years, I have enjoyed the process of training a new crop of wheelchair skills instructors. As well as a sense of satisfaction that comes with teaching anyone anything, the process of trainer training gives me a reminder of just how valuable the wheelchair skills programme is. It's also good to be reminded that I am not alone, and getting together with other instructors of a similar experience is a great way of recharging the emotional batteries.

Motivation for Ingenia Magazine

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Occasionally one gets the opportunity to write on a subject that feels really personal. My article on the wonderful Motivation for Ingenia Magazine was one of those opportunities. Enjoy.


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A shift in perspective.

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Just before Christmas I spoke at a charity fundraiser for Murray's Muscles, an organisation that does much to help those affected by muscular dystrophy. It was a challenge to think of what to say: My story has little in common with the experiences of those affected by muscular dystrophy. I have experience of navigating the world as a wheelchair user, but I do not have a degenerative condition, and many of my attitudes to life were shaped over thirty-six years as a biped.

But I am also a father, and so I tried to focus on what we can all do to improve the life experiences of children with disabilities. Here's an excerpt from the speech that I delivered.

"Much of the frustration that I felt during my rehabilitation came from having to learn life skills all over again, especially as I was doing this without the energy and wide-eyed enthusiasm of youth. It's easy to forget the excitement and enthusiasm that accompanied those first forays into independence.
 
Yes, we may remember moving away from home for the first time, but go back further. Can you remember the first time you made your own breakfast? This example is on my mind, as the father of a six-year old daughter. I have often reflected on these formative experiences while mopping up puddles of milk and picking cornflakes out of the toaster.
 
As a parent I can see how many of my daughter's games and activities are concerned with playing at being a grown-up and an enthusiasm for doing things on her own. But while I can appreciate the joy in this when I watch her, I felt very differently when I was trying to discover my independence the second time around.
 
It was certainly harder as my struggles with daily activities were soundtracked by a voice in my head just kept saying, "What's the fuss. You can do this." It took me some time to re-calibrate my expectations, to let go of habits learned in a former life, but once I reconciled myself to the reality of my changed circumstances, I learned the value in plotting these tiny victories as steps along the way to claiming my life.
 
I can remember the first time I got my own breakfast in the spinal unit. I can also remember the first time post-injury that I went to the toilet on my own, had a shower, made a cup of tea or cooked a meal. It's easy to forget that these relatively mundane activities help to give us a sense of independence. As adults we take these things for granted until they are denied us.
 
To this day, I view such modest activities with a new perspective. This can be frustrating for those close to me, who have to watch me struggling with something that they could do with ease, but it's important that I do things for myself. This is who I am.
 
I have also come to realise that the accumulated affect of these modest achievements has been to build a new confidence, which has led to a new creative drive and in turn a new career. I began by writing about my own experiences. But I also had some questions to ask. How has my life changed? Are all the changes necessary? Should I be changing my expectations of what life has to offer, just because I'm in a wheelchair? Over time, I have developed and approach to everything that can best be summed up as,
"Find a way to do it, then decide if it's worth the effort."
 
My bloody mindedness has also led to me becoming a wheelchair skills instructor for a spinal injuries charity. And when I work with children with disabilities, I can see how empowering it can be when we are able to offer them opportunities to establish some independence, however modest it may seem. It may be helping to establish the confidence to self-propel, or negotiating a kerb or steep ramp.
 
Not everyone has the same goals, expectations or abilities. But it's not a competition.  It is important that every individual is given the opportunity to grow, to find their own boundaries, to make the most of what their life can offer."

Gervais and the m-word

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For anyone who hasn't been following the story, here's an outline:

Undeniably talented comedian Ricky Gervais has been using Twitter to post pictures of himself pulling faces and describing them as 'Mong'. A few people observed that this could be construed as offensive towards people with Down's syndrome.

For the record, I am not offended, but I am annoyed. While Ricky Gervais claims that the word no longer has the same meaning, it is clear that it does, otherwise there wouldn't be such a debate. Gervais has done much in his career to challenge perceptions of disability, from the Office through to his Government funded advertising about employing people with disabilities.

But while he may feel that there is some subtle nuance in the use of the word Mong, it is clear that many of his followers on Twitter do not grasp it. Instead of letting the issue die a natural death, Gervais has 'unleashed' his followers on anyone who disagrees with him. Some of the recipients of some of the quite nasty comments are people who have personal experience of Down's and of associated bullying.

I do believe in free speech. I do believe that comedy should be controversial and may even be offensive. But with the right to offend should come some responsibility, especially if you are someone as popular as Ricky Gervais. I imagine that many of his supporters would balk at the prospect of defending Jim Davidson's routines from the 1970's. It is perhaps unsurprising that Gervais is on record as saying that he would be uncomfortable with using the word nigger on stage. Why is this different? 

To use the argument that anyone who disagrees is just jealous of his success is pathetic.
It is equally pathetic to claim that anyone who expresses a different opinion to Gervais is doing so only for reasons of self-promotion. It is insulting to accuse the mother of a disabled child of using their child's disability for self-promotion, just because they joined the debate.
  
To attack anyone who disagrees with his interpretation of the word Mong as being in favour of censorship is to completely miss the point. Surely that accusation is better aimed at anyone who shouts down dissenters.

If you ask me, I think it's time Ricky Gervais grew up and recognised the influence he holds. How he chooses to use that influence can have a profound impact on some of the most marginalised people in society.

He is not in the playground anymore. Words have consequences.

When four makes two

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Rreading.jpgWith Penny and Felix in Australia so that the little man can meet the other half of his family, I am still adjusting after a week of school run routine. Who knew there was so much time in the day before nine o'clock?

All these miles (slight exaggeration) clocked up to and from the school gate with a scooter balanced on my lap have made me think. If I got a huge elastic band, the scooter could return home without me having to carry it. Except then I'd need two scooters and two elastic bands.... No, not that. I find myself reflecting on how lucky I am to be in a situation that allows me to re-organise my day (by which I mean do less work) in order to give my time to single-parenting for a couple of weeks.

This is partly because I am a freelance writer/journalist and can therefore make reasonable use of the time between 9 and 3.30 without extra child care. But it is also because I am able to look after myself enough to be able to look after a small human being too. Not everyone with a spinal cord injury is that fortunate. Partly this comes down to the level of injury, but it is also due to the level of support that I have received and still do receive from family and friends. By creating a sense of security, they have enabled me to try (and occasionally fail at) things in order to make the most of what is left to me.

My determination/bloody-mindedness may have contributed to this, but without feeling fully supported, I would not be able to push hard against the things that make my life difficult. If my mobility and confidence were still at the levels reached after I had been out of hospital for a couple of years, I would have been extremely apprehensive about coping for two weeks. Instead I was only mildly apprehensive.

There have been other people who have made the first week relatively easy. Other parents from Rosalie's school have invited her on playdates with their kids and offered to pick her up on the way to school in the morning. All of this has been welcome, if only to keep her distracted from the absence of her of our family unit.

But perhaps more than anyone else, the person who has made the week stress free and fun has been Rosalie herself. Although only six, she understands so much about what I can and can't do, and is patient and cheerful most of the time. I could do well to learn from her example.

Finally, could I point you in the direction of the BT Storytellers for my article on a strange game of tennis, and observations on the subject of teamwork.

That is all.


Déjà Views

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This is a subject I have surely covered in the past, but my goat has been got again, and this time I've been snap happy, recording things for posterity. The well worn topic for today's blog entry is the disabled toilet. Or rather, the disabled toilet as store-room.

OK, the first example comes from The Old Dairy pub in north London:
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Lovely attention to detail here. Not just an obstruction, but and artistically constructed and very unstable obstruction. But then, where else would you put your bar stools. What's that? By the bar? Surely not.

The next example can be found in the disabled bathroom/changing area at Highbury Swimming Baths:
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As a father, I have had cause to be grateful for a change table in the disabled toilet. Except when it is right by the door, making access to the room virtually impossible. When I pointed out that having all this stuff by the door made the room virtually impossible to use, the staff member I spoke to said, "Well, lots of people use the shower chair.  If you need it moved, you can always come and find a member of staff to move it for you."

I can see how that would be reasonable. Except that I've just rummaged around to find my RADAR key, and I'm trying to use the toilet before the rest of the family come out of the changing rooms, children damp and ready to go home. I don't want to have to go and find a member of staff (not always easy in leisure venues in my experience) just so that they can re-arrange to furniture. Especially as the room in question is big enough to store that stuff at the far end.

I'm sure if I asked at the pub they would have moved the bar stools (as they did the table, chairs and sofa blocking the ramp by the front door).

But I don't really feel like having to trawl around a venue trying to find a member of staff before I can use the toilet. If the pub is busy and noisy, with lots of people standing up, just getting to the toilet can be a real hassle, and sometimes I just don't have the energy for feeling 'different'. I just want to take a leak. I don't want to be placing my nose on the bar and hoping my hair is tall enough to be spotted by the bar staff.

In some ways, I'd rather a venue have no disabled facilities, rather than fill the disabled toilet with the entire contents of an Ikea catalogue. What that says to me is,
"We've put in a disabled toilet to conform with our requirements, but storage space is more important to us than whether or not any disabled patrons can use the toilet."

By contrast, I've been to venues where the facilities are far from ideal-ramps too steep, doorways a bit narrow, but they've made an effort. They make sure staff are switched on and helpful. At  Nikole Lowe's  Good Times Tattoo studio, there is a massive staircase to be negotiated. I was still made welcome, with three members of staff carrying me up and down the stairs in my chair. Once up there, the bathroom is accessible, and the whole studio is on one level.

All of which proves that when it comes to access, attitude is everything.


Perceptions

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When telling a story of adversity, of heartbreak, suffering and triumph of the human spirit, of heroism, many people will reach for a cliché or two. There is also a tendency to simplify details in order to find the 'human interest.'

This can be frustrating, particularly for anyone with personal experience of the adversity/tragedy that besets the subject of such inspirational tales. When it comes to spinal cord injury, as well as emotional turmoil, most people affected find themselves plunged into a bewildering world of 'levels,' symptoms, mobility issues and long term conditions.

Despite the massive potential for different symptoms and outcomes (some people even manage to break their back but not damage their spinal cord), the simplified version of events prevails in most media coverage. All too often, the story told is one where our hero is told he will never walk again, only to defy the medics and achieve the impossible.

Don't get me wrong, I am pleased for anyone who defies the odds and makes any kind of unexpected recovery. But it's frustrating when the story suggests that it's not the complex nature of spinal cord injury that leads to such a wide range of outcomes. No. It's all about the guts of our hero. If you are bloody-minded and determined enough, it's possible to beat the prognosis.

It's a heart-warming tale. Inspirational. But what of those who don't defy the odds? My paraplegia was instant and (so far) permanent. Is this because I'm not determined enough? should I have ignored the medical professionals? Was I too quick to accept my fate?

Of course not. I am diagnosed as T12 ASIA A. This means that I have no movement or sensation anywhere below the nerve bundles that leave my spinal cord from my twelfth thoracic vertebra. My spinal cord is 95% severed, my T12 vertebra still out of position and fused with my L1.
 
If I put calipers on, I can get up on two feet. But it's hard work and very few people of my level ever master functional walking this way.  An incomplete injury (some function below my level of injury), or a level or two lower, and I might have found it possible to get up on two on a regular basis.

But all of this takes some explaining. It's not a single line story. And no amount of 'Rocky'-style training montage would have got me running up a flight of stairs again. Would it?

Incapacity

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My observations about Incapacity Benefit are now on The Guardian's website.

The discussion around benefits is often a heated one. The lines seem to be drawn between those who believe that the system is being exploited by most claimants and those who feel that they have been marginalaised by society because of their circumstances.

In my opinion, neither the old nor the new system is fit for purpose.

There can be little doubt that Incapacity Benefit was used in the past to massage jobless figures. It is surely no coincidence that the level of Incapacity among men of working age increased in areas like the North East of England at a time when many industries were in terminal decline.

But there are also many people who have a genuine case, but who would be deemed fit for work by the new system. There is also a wider issue. Many employers are reluctant to employ people with disabilities, particularly those with chronic conditions or who have a history of mental health issues.

Society needs to be able to provide meaningful and adequately supported opportunities for people with disabilities, we need a safety net that recognises health issues and the difficulties involved in finding alternative income. Until then, the existing system remains the only way of preventing many people  from slipping into homelessness and despair.

Knackered....

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I'm loathed to put up yet another 'incident in the disabled space outside my house' posting, but yesterday's encountered made me aware of how relatively fragile my sense of equilibrium is at the moment.

Yesterday, London was subjected to a series of sharp thunderstorms. As any wheelchair user will tell you, rain is a pain in the arse. It is virtually impossible to avoid getting wet, and I have tried to develop a mindset whereby I resign myself to it, and just get on with life. This is made easier by the warm weather, it must be said.

I went to the supermarket, where I performed my usual balancing act, which involves me filling a basket on my lap until I use my chin to keep the last items on the pile to the checkout. From there, the shopping goes into 2 large bags-one on my feet and the other on my lap-and out to the car.

I arrived home to find a car in the disabled space outside the house, blue badge in sight. This meant that I had to park across the road, and as there are no drop kerbs outside the house, I couldn't take the shopping from the car, across the road and up the kerb on my own. Luckily, Penny was in and she came out to help me.

A few minutes later, the car owner returned to his vehicle, and I went out to talk to him. I told him that I had been forced to park across the road and get assistance to bring the shopping in.
His first response was to say,
"I know how you feel, mate. I'm knackered myself."
huh?
I replied, "Knackered, you may be. But I'm paralysed from the waist down. Want to swap?"
That is to say, I would have said this, had it not been for the fact that I only thought of this pithy response once I was back in the house.
He then went on to say that he had only just noticed the sign when he got back to the car (he seems to have missed the word disabled in white letters on the road), which makes the 'knackered' comment even more inexplicable.

Anyway. It is not the parking infringement that I wanted to talk about, except that it illustrated just how fragile my sense of independence is. I am able to look after myself, care for my children, run the house, even work as a freelance journalist. But all of this requires me to live right at the edge of my abilities, and even the smallest hardship can make it all seem so tenuous.

I know that I'm lucky: I'm relatively fit, I'm also quite strong, I have my core muscles that make balance easier, and I have a loving and supportive family and great friends. But it's the psychological effort involved in maintaining a positive outlook, especially when dealing with constant pain. What for most would be a mild inconvenience can be enough to unsettle me for the rest of the day.


Diplomatic role

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There are occasions when I am presented with the opportunity to increase the understanding of the general public on matters of disability, and/or wheelchair use. In this regard, my position as former able-bodied-gad-about-town can be useful. People often find it easier to imagine the daily challenges when they consider how an injury like mine would affect their lives.

This is one of the myriad of reasons for my writing a book about my experiences. Obviously, vanity played a part too, but there was a desire to comment on the transitional process, and how one goes about rebuilding a life for the future.

That said, there are some days when, for whatever reason, I simply can't be arsed. Tiredness is often the cause, or pain. at such times, my role as Ambassador for the Undemocratic Republic of Disability seems like just a little too much effort.

Today I had a 'chat' with a passer by while I was getting out of my car.
It was the usual opening line.
He: Are you alright mate? Do you want a hand?
Me: No thanks, I've got it.
He: It's no trouble. Cor, you've done that quick.
Me: Well, I've had a bit of practice.
He: Must be hard though, isn't it?
Me: Yeah, well... (I mean, what am I supposed to say to that?)
He: So, erm, what happened  then? How come you can't walk? I mean, why are you in a wheelchair?
Me: What, this? Oh no, I'm just lazy.

I know it probably wasn't fair. And it actually made me feel awkward, so I smiled and gave him the one sentence version. He ended up walking away looking puzzled.

I could have said to him, "I'm really tired," or  "Sorry mate, it's complicated and I'm in a bit of a rush," or even,
"Sometimes, it's just easier to get on with my life and try not to think about how I ended up in a wheelchair, with all the inevitable dragging up of thoughts about the things I miss out on, the things I'll never do again. If one person in five asks me how I came to be in a wheelchair, then I have to go over it all three of four times a week. I don't always have the energy. Occasionally, I'd like to go back to being invisible again."

But I was tired, and it's complicated. Besides, I thought it was funny.

Today's article in The Times was all about fellow Back Up wheelchair skills instructor Peter Donnelly and his amazing wheelchair  journey overland from Bangladesh using public transport.
Here's his blog, and a link to his fundraising page. He's aiming to raise £5000 towards a rehabilitation centre in the North of Bangladesh.

In other news, I must confess to being decidedly unimpressed with the new signage for disabled parking the the South Bank...
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(Should this one pass you by, it's not just an ice cream flavour, it's also cockney rhyming slang)

We're all in this together?

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The UK Government's consultation about Disability Living Allowance is due to finish on the 14th Feb (Valentine's day. How romantic). With this on the horizon, campaign group The Broken Of Britain has launched a blog entitled One month before Heartbreak to highlight just what's on the horizon for disabled people in the UK.

I get DLA. It pays for my car. If I didn't have the car, I would probably be a bit fitter. But I would struggle to play a full and active role as a parent. I would probably find working as a journalist very difficult too.n As a paraplegic, I am unlikely to lose my DLA. It's not hard to pass medical assessments when your legs resemble those of a half-melted Action Man.

But for many people, there is a real anxiety at the prospect of losing this support. People in care homes, for example, often rely on the DLA to provide them with some level of independence, and they Government have already announced that they will no longer qualify.

But the proposed changes to DLA need to be seen in a wider context.  Over the coming months and years, cuts look set to profoundly affect independence and quality of life for many disabled people and carers.

  • The removal of funding through Access to Work for small businesses, self employed disabled people, and middle companies will result in fewer disabled people being able to work and contribute to the economy.
  • Other benefits have been frozen which could mean an effective cut of 15% over the five year term of this Government.
  • The 27% cut to local Government spending is certain to affect funding for specialist schools,  hospices, car homes and care packages for those still living in their own homes.
  • The end to security of tenure in Local Authority Housing beyond two years. Where do people go then? The UK already has an acute shortage of accessible housing in both the public and the private sector.
  • The end of the Independent Living Fund, forcing more people into a care system already struggling to cope.
  • Employment Support Allowance (which replaced Incapacity Benefit for new claimants in 2008) will be limited to one year.
  • Housing Benefit to be cut to 20% below market rates.
Cameron and Osbourne would have us believe that these changes are essential, that they will only affect work-shy people who shouldn't be on benefits, and that we're all in this together. (n.b. while it might not be very much, I don't avoid income tax, George). 

In practice, the changes will affect a section of society who are more likely to be poor and socially excluded than any other group. Around a third of disabled adults live in low income households, and only one third are in paid work.

I'm fortunate. I'm a gobby cripple with great support from family and friends. I don't get Incapacity Benefit. I chose to come off IB, even though the vagaries of freelancing means there are times when I would probably have been better off on benefits. Still, I am able to pursue something approaching a career. But I'm also part of a section of society that is more likely to be disadvantaged, and who often struggle to be heard in the wider political debate.

It's easy to shout loudly about benefit fraud and the 'Nanny State', but a small amount of scrutiny soon reveals that the majority of those affected by the cuts will be people who depend on relatively modest state support to allow them a reasonable quality of life.

We need to choose what is important. To put the deficit in context, have a look at this excellent graphic from David McCandless at http://www.informationisbeautiful.net 
(click on the image to enlarge)
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Today's Guardian article

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Today's article is a profile of an extraordinary man.

I met Adam Thomas when he came to talk at the RSA design course recently.

He was a key figure in the Rights Now campaign in the early nineties that led to the formation of the Disability Rights Commission. The Commission then produced the legislation that became the Disability Discrimination Act.

During the campaign, Adam and others took direct action such as handcuffing themselves to buses (he met his wife when they were both chained to the same bus). It was edgy stuff, but anyone who enjoys the level of access that we now have owe a debt of gratitude to Adam Thomas and others like him.

Yes, it's not perfect, but I can get on a bus, and I can complain if shops or restaurants don't make reasonable provision (I will revisit that particular fight in due course).

All of this comes down to a culture shift, which is usually described as the change from the 'medical model of disability' (the shortcomings are individual, and disabled person needs to be cured or managed in some way) to 'the social model of disability' (the shortcomings are social and need to be changed in order to be more inclusive).

This may seem a bit complex or academic, but it is really about a culture shift, and an important one at that. We are moving to a point where excluding disabled people from access to services or the built environment is now seen as unacceptable rather than 'one of those things'.

Guide for disabled parents

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Here's a link to my article in today's Guardian introducing the very useful guide that DPPi have produced for disabled parents.

Handy & Manageable

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Recently had an interesting experience on my first visit to a new and much more conveniently located branch of a large and popular clothing chain. To nutshell it:

There are no wheelchair accessible cubicles on the upper floor (Menswear and childrens clothing). Seeing as the facilities required consist of a marginally wider doorway and curtain instead of a door, and seeing as the branch has only been open for a couple of months, my first surprise was the lack of basic facilities. My second was that the staff were unaware that this was the case, or indeed whether there were any accessible changing facilities in the branch at all. There are, but they are on the other floor.

If I am in a new store, I don't see why I should have to choose items,make my way across to the lift, queue up for the lift, go down to the lower floor, make my way across to the ladies changing areas, queue up there, then have my wife refused access to the changing areas when she comes to find me as I've been gone for ages...

I contacted the Customer Services department, expecting a Helpful & Measured response.

They offered to retrain the staff and said that they should have waived the 'only one person in the changing cubicle' rule in this instance. All good, but they completely dodged the facilities issue.

I tried again, beginning to feel Heated & Mistreated. The response included these lines:

Due to this being such a new store, unfortunately, there is no current plans to amend the facilities in our fitting rooms.

We will however, be taking steps to ensure that our staff are trained to a very high standard and are able to deal with all situations quickly and effectively.

Now here's the thing. It is a new store. That's my point. I don't expect a brand that makes Hundreds & Millions of pounds in profit every year to be constructing and opening branches in 2010 that do not include the 'reasonable adjustments' required under the Disability Discrimination Act and also included in the new Equalities Act which came into force this month. I should also point out that I don;t expect to have to point out this deficiency three times before it is even acknowledged as a shortcoming.

BY now Heated & Miffed, I decided to cut to the chase, and I helpfully sent links to the specific legislation relevant to this case (for reference the DDA can be found here, and the new Equality Act here).

It seems my Haughty & Miffed approach has finally brought their attention to what is, after all, a relatively easy oversight to correct if you are, say, enormous and Swedish but don't make furniture.

The response this time was what I would have expected initially:

We would like to apologise once again for the experience you have had in our store, regarding the design of our new store and lack of disabled facilities.

This has been brought up with the area manager of this store who will deal with this in store.

We realise this has been a major inconvenience for you and we hope that it will be changed for you in the future and that shopping in --- will be more enjoyable and at ease for wheelchair users.

I look forward to availing myself of their facilities in the near future.

Oh, and by the way... I haven't avoided using the store's name out of concern over legal issues, I just love a Thesaurus. Here's hoping I don't end up feeling Hurt & Misanthropic...


Access any areas

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I have recently found myself reading a number of bizarre 'accessibility statements' for venues. Perhaps it is coincidence, or perhaps it points to more places feeling that they need to tick a box on disability access.

"Ah ha." I hear you say. "Can I hear the call of the Jaded Cynic?"

Quite possibly, but the reason I suggest there is a whiff of tokenism will be apparent...

First up:
"We regret that the building is accessible by stairs only. We have created links with other arts organisations that are fully accessible so that projects available at Chisenhale Dance Space can take place in other venues. Please contact us if you have specific access requirements."

The implication here seems to be that if I want to take part of watch one of their projects, they will move the whole thing to another venue. Maybe it's like a Cliff Richard movie.
"Hey everyone, why don't we just put the show on right here?"
cue jaunty music over jump-cuts of venue renovation.
If that is the case, then I think they should get whatever the highest accolade is for a disability access policy. On the other hand, that might not be what they mean at all, and that's the point. What are they saying? And if it's that vague, then why bother saying it at all?

Secondly:
"The Luminaire welcomes everyone and our aim is to make your visit as comfortable and enjoyable as possible, whether you're here to see a band, or play in one. We are a first floor venue and whilst we would like to provide easy access for all, there may be accessibility problems for those with restricted mobility. Entry is via a stairway [with two turns]. The venue itself, however, is on one level, though our toilets have not been adapted to be wheelchair accessible. If you have a disability and want to visit us for a gig, drop us an e-mail well in advance and we'll do everything we can to help."

They welcome everyone, providing they can cope with stairs and don't need a disabled toilet. But, hey, even though you might not be able to get up the stairs, the venue is all on one level. One level at the top of a whole flight of little levels, and with two turns along the way.

Ok, they are showing willing. But why use phrases like 'easy access for all' if they can't provide it. I'm sure they would like to provide it. I would like to be able to levitate (it would make stairs easier). I would really like to assemble a farm full of miniature animals. But it doesn't mean I can or will do these things (I will do the farm idea, one day).

 As with many other wheelchair users, I don't expect every venue to be accessible to me. Yes I expect reasonable adjustments to be made (in accordance with the Disability Discrimination Act). To do so makes good business sense anyway.

But when a venue cannot reasonably be made accessible for everyone, then that's fine. I many be a little disappointed, but them's the breaks. If they make it clear what the situation is then I have no problem.

But what annoys me is when a venue makes vague or contradictory statements claiming commitment to access for all. Just tell me what the situation is so that I can make an informed decision. If you don't then I end up doing things like this:
stepped.jpg
The steps in this picture are at the otherwise wonderful Butterfly World Project.

I would encourage everyone to visit Butterfly World. The butterflies are stunning, the facilities are excellent, the landscaping innovative and beautiful, and the aims and principals behind the project are to be applauded. One teensy criticism: The map doesn't make it very clear where there are steps. On this occasion, it would be possible for them to construct a step-free switchback path to cope with the level change, but I don't mind that they have steps (especially as the majority of the site is wheelchair accessible). It would be nice if they put them on the map, though.

MOT

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I was back up at the National Spinal Injuries Centre in Stoke Mandeville for my annual service today. Sadly not with the enigmatic Dr.J, so none of the usual banter.

I am not sure to what extent things have settled down or how much I have adapted to my condition, but I am taking less medication, and my pain is no worse than it's been.

My bladder management is generally pretty good, excepting a few bladder infections this year, although the more I ask around, the more common the experience is, and for most people bladder management is a case of juggling (no, not with catheters or bags of urine) medication, timing and fluid intake. I have been lucky up to now that I could be rather complacent, but from here on it's a case of a little more discipline.

I am still extremely lucky to have very good skin and good circulation, so the risk of pressure sores remains low.

My bowel management is straightforward. Digital stimulation makes it sound like a computer game. A different Call of Duty, perhaps.

For anyone as yet unfamiliar with the ins and outs (oh stop it) of life with a spinal cord injury, today's summary may offer you an idea of what the day to day experience involves. It's not that these things dominate life, necessarily, but they do play a large role, and while one adapts to incorporate many fairly icky things into daily routine, it does make it a little harder to make an early appointment, or to stay over at other people's houses.

One thing that may have changed since last year is the level at which I lose sensation. I have always been a little lopsided in this regard, with more sensation down my left side than my right, but seem to be more aware of it recently. I have noticed that if I reach for something on the floor it is harder to sit back up from the right than from the left. It's not so defined as to convince me that things may have changed, but it is enough for me to want to have an MRI to make sure that I'm not developing a spinal cyst which can increase level of paralysis by damaging nerve bundles higher up the spinal cord.

Up to now I have had an MRI annually, but ironically I was not scheduled for one this year. While I'm sure Dr.J will have no hesitation in sending me for one, today's consultant offered me a variation on one of the most insensitive cliches in spinal medicine:
"If you're paraplegic, then you can afford to lose a few levels, not like a tetra."

Today's version was, "If you were T4, you'd still sit in the same way."
 Er, no. My backrest wouldn0o9t be this low, my transfers would all need to be relearned, I wouldn't be able to sit upright without leaning on something, not to mention the fact that I would lose all sensation in my trunk. When one is paralysed, every tactile experience is something to value, to treasure.

Presumably, as he has no spinal cord injury, then there's even more scope to 'lose a few', sure, he might become incontinent and maybe even unable to walk, but, hey, he'd still be able to sit in the same way.

I think the point he was trying to make, albeit clumsily was that surgical intervention for a spinal cyst would not automatically be the first solution and it may be necessary to monitor things first. My point was just that. I want the monitoring to continue in the same way as was deemed appropriate over the last 5 years.

On the plus side, I did get weighed while I was up at Stoke, and I've lost four and a half kilos in the last year. This would seem to be the result of increased regular exercise, which is great. Really great. Still, if you were thinking of sending me a pie at some stage, then please do.

desperate_dan.jpg

You, there. Eu phemism?

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Atttended a very fine opening night for the very fine BHVU open last night, which resulted in me feeling particularly jaded as I watched R deliver her line and sing a couple of songs at school assembly this morning. All very sweet, but I find the level of technology awareness staggering at times.

When grandmother spoke to R last night, she said,
"Don't forget to speak loudly and clearly."
R replies,
"Oh, it's ok Oma, I'll be using the microphone."

A more peculiar comment came when I overheard someone behind me make reference to me in conversation. I was described as,
"The guy in the red shirt."
Was the speaker worried I would overhear and be offended if he had described me as 'the guy in the wheelchair'? Or did it just not occur to him that my chair is quite a defining feature? I was the only wheelchair user at the event, so it would have been easy to pick me out. It is true that I was the only person in a red shirt in the gallery at the time,so that description worked just as well in context.

I felt puzzled more than anything. I have no problem with being described as the guy an a wheelchair. As long as I'm not described as wheelchair bound. That's an expression that pees me off. I am not bound by my wheelchair, I am freed by it. Without it I am bound by my paralysis. On a gravel path, one wouldn't describe a walker as shoe-bound, nor would a sailor in the middle of an ocean be described as boat-bound.

It's not about being PC, or causing offence. It's about words that suggest tragedy, as if life is as good as over.

Self aware

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So, it was as I predicted. I choked, I froze, I generally went to pieces on the baseline, and the court stubbornly refused to open up and swallow me. In short, I did more to demonstrate the importance of good sports psychology in one weekend than could have been achieved in a year of victories.

But for all of that, I came back from the weekend feeling energised and more enthusiastic about tennis. I remain a passionate believer in the vital role that sport can play in physical well-being for many people, especially after sudden disability. But there's something more and, not for the first time, I find an entry on Andrew Farrow's blog that is both timely and apposite.

For me, tennis provides me with moments of total focus when I am oblivious to all else. It was this sense of my 'mind quietened' that drew me to climbing and working at height (up a tree for example). This coupled with an acute awareness of every movement, and an almost hyper-reality that I felt which no doubt came from overcoming one's instinctive anxiety about being off the ground.

However, tennis involves something altogether less familiar and utterly fascinating. When playing under pressure, the body suddenly decides to do something completely different to what is asked of it. Instead of fluid hitting through the ball, the shoulder decides to get heavily involved and a simple topspin forehand becomes a drive that a pro-golfer would be proud of.

Please forgive me if it sounds like I am covering the same ground as in numerous previous missives. It's just that I think I am beginning to understand what fascinates me about the collapse in my co-ordination...

Over the last five years, I have spent many, many hours becoming extremely aware of my physical manifestation. The loss of function and sensation in one half of my body seems to have intensified my experience of 'how the other half lives'.

Coupled with this increased awareness of sensation has come a need to consciously think about how to look after the rest of me, the part I can't feel. I have had to learn how to assess circumstances or incidents in terms of injury risk without the signals that one instinctively relies upon. In other words, just because it don't hurt, doesn't mean it ain't broke. And fixing it is often more complicated, too.

I have learned how to balance myself and my wheelchair when even the tiniest movement can be enough to throw me off balance. There is a tendency among some in the SCI community to view people who still have functioning abdominal muscles as being able to balance and function like any able-bodied person sitting down. While it is true to say that I can sit upright in a chair without leaning on a backrest, it takes very little to unbalance me. If I reach out with one arm, for example, I have to work extremely hard to avoid losing balance, and I certainly couldn't pick up anything of even modest weight without holding on to something with the other hand for stability.

But all of this has become (almost) second nature, yet another example of our astonishing ability as a species to adapt and overcome profound adversity.

I still can't hit a tennis ball if anyone is watching, mind.

Home comforts.

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Our flat is wheelchair accessible, or at least I think it is. To be more accurate our flat is me-in-a-wheelchair accessible which, I am coming to realise, is not necessarily the same thing.

It's not that I have had many other visitors come to test it. Which is strange in a way. Yes, some of my best friends are wheelchair users, but my encounters with them are all elsewhere. This is not a deliberate policy, but I had to think about how many other people in wheelchairs had visited our flat. I think perhaps two. That's two visits in five years.

What got me thinking about this was an increasing sense of pride in my ability to overcome obstacles or unsuitable facilities. If we stay in a hotel, all I request (apart from no stairs) is that the doors are sufficiently wide (and my chair is a slim 64cms. Narrow enough to pass easily through a standard width doorway), and a bath, rather than a shower cubicle.

Yes, I start by requesting a fully accessible room with a shower seat in the bathroom, but the reality is that these are few and far between. And such rooms often feel institutional, with twin single beds and lino floors.

If I stay with friends, then I strap on (oo-err) my 'all-rounder' and take to the stairs, bum-first. Yes, it's hard work, but it does mean a more 'normal' life. I can stay, I can use the bathroom, I don't have to sleep on the couch/in the dog basket/in the shed.

But I'm also conscious that I'm at the more active end of the paraplegic spectrum (and that one day I won't be). And as I get on with life at home I am starting to notice the things that are just a bit of hassle for me but would be impossible for many wheelchair users.

One day...one day...
 A house with wide hallways that I can turn around in, more shelf space at a lower height, an easily accessible garden (ours has a flight of eight steps down from a balcony), and most holy of holies, a garage for me to put all my wheelchairs, bikes, trikes, spare cushions, wheels and tyres in. Oh, and a studio. 

Maybe I'll even get a wheelchair and a computer all to myself...

chair-user.jpg

Cold comfort...

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It is of little consolation to read that other wheelchair users find themselves pretty much housebound by the snow. Andrew Farrow, for example, talks of getting stuck between the house and the car, when he found himself wheel-spinning in the snow. I managed a few good wheel-spins on my semi-slick tyres yesterday.

Then I rolled through what appeared to be snow, but was actually a load of crushed mothballs (?). No really. As a result, my wheels, my gloves and even the cuffs on my jacket smell like the long-abandoned depths of a grandmother's cupboard. I keep glancing nervously over my shoulder, half-expecting to be savaged by a mink stole. I hope the smell doesn't have the same fur-coat associations for foxes, as one has taken up residence in our garden...

On the whole, I have remained relatively mobile, thanks largely to Penny clearing the path and the good people of Hackney Council coming and regularly shoveling snow off the pavement. That being said, I have still avoided venturing out except for the odd foray to the supermarket.

This feeling of house-boundedness has served to remind me just how much of my connection with the outside world was severed along with my spinal cord.

Before my accident (fell out of a tree while working as a tree surgeon for anyone new to this site), I worked outdoors every day. If a day went by without me going outside, a used to feel really odd. A sort of crawling the walls, claustrophobic odd.

Most of my leisure activities involved being outdoors- football, mountain biking, hiking, camping, Ultimate, or just hanging out in the park or on Hackney Marshes with friends.

Now, it is possible for me to go three days without leaving the house. This is extreme, of course. We don't usually have this much snow. If we did, I would probably work out a few strategies to make life a little easier. I still have quite big tyres on the wheelchair wheels that I 'wore' to Australia, and that certainly helps.

But with a platform lift between me and the street, and a balcony and flight of stairs between me and the back garden, I have lost the ability to just 'step outside'.

So I find my wishlist growing ever longer. As well as dreaming of an open plan home with level access throughout, I would like to be able to roll out into a garden, cup of coffee in hand, and stare at a few trees. Please.

Mind you, staring out of the window into the back garden revealed that I am not the only one who appears house-bound at the moment...
squatter.jpg

Challenging stuff...

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...snow. Wheelchairs aren't really at their best in it. It's better than sand, being a little more sticky, so that it's possible to push through with decent off-road tyres. But it's cold. Very cold. And it makes the pushrims on the wheels very cold. And wet.

This makes finding the right gloves critical, as they have to be reasonably waterproof and still grippy when wet. And you still need to maintain a reasonable level of dexterity. I have tried many variations. Sailing gloves, which are my first choice normally are great for grip but freezing in the snow. Fleece gloves are great for keeping warm (although the seams inevitably leak) but they're lethal when wet. After running out of control on a relatively gentle slope and gliding elegantly into a large shrubbery, I decided the fleece gloves had to go.

I have even tried neoprene gloves which are certainly warm but much too grippy, making 'braking' sudden and very unpleasant and leaving the wheelchair user with whiplash at the bottom of the first hill. But thankfully I have rediscovered some gloves that the missus bought me for cycling in the winter a couple of years before my accident. They have pretty good grip, but not too much, and I can still feel my fingers after five minutes so it is those that will adorn my hands on the way the the Arsenal this evening, if the match isn't snowed off.

Sorry, that's much too much waffle about gloves. The truth is, for all my bravado, off-road tyres and warm gloves, I find the snow very difficult. Not because It's so hard to get around in. OK, that doesn't help much, but that is as nothing compared to the feeling of sadness at not really being able to take R up to the park, build a snowman, go zipping down hills with plastic bags for toboggans, and then carry her home when her feet are too cold to walk anymore.

So instead I glance out of the window facing an internal struggle between the child-like almost instinctive excitement, and the curmudgeonly practical gloom as the snow continues to fall.

I'll be honest, the worst thing about the comparison between the sand of the beach and the snow of the city is when they are separated by a matter of days and about 35 degrees celsius.

See what you think. Which of these two pictures looks more appealing, especially without any cocoa? By the way, it's not raining in the bottom pic, it's a sprinkler I went to sit under because I was overheating.

snow.jpg 
sun.jpg

Out spaced

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Like many disabled people, I have a Blue Badge disabled parking bay outside my house. My house which also has a big platform lift out front, in case anyone wonders why the disabled space is there.

The trouble is, my local authority put in a disabled bay which can be used by anyone displaying a disabled badge, so there are occasions when people park in it anyway. This is annoying.

But not so annoying as when the daughter of our neighbour starts parking her car with a disabled badge in my parking bay. She has the badge because her mother (who hasn't left the house in about two years) is disabled.

Last night, I came home in the pouring rain with small child and bags, only to find that t=she had parked in my bay again. I left a note on her car, but then took it off as it was a bit angry/wordy, and I though it better to say something face to face. This morning I put a more concise note on her windscreen.

Sure enough, the doorbell goes and it is her.
"About the parking thing. I have a badge for my disabled mum. I asked the council, and they said that I could park in the bay."

"Well, technically, you can. But I requested the bay be put there for my use, and you've seen me getting in and out of the car plenty of times," I reply.

"Yes, and I understand that you should have priority, but I did ask the council, and you only have to come and knock on the door and I can move my car."

"You have five steps up to your front door."

"Ah, yes, but I did ask the council, and if I'm parked there you could get someone to come and knock on my door and I can move my car."

"But what if I don't have anyone with me?" etc.

So, if she is parked in the disabled bay, I am supposed to double park, assemble my wheelchair, get out of my car, wait for a passing member of the public, convince them to go and knock on her door, wait for her to move her car, get into my car, dismantle my wheelchair, park my car, put my wheelchair together, and then get out of my car.

Seems reasonable to me.

Which just goes to show. Some people are so selfish, and/or lazy, that logic just doesn't come into it. It's obviously not the first time (see previous entry), but this is our neighbour, who says "hello," from time to time, and on one occasion, when I was using the platform lift, said, "I wish I had one of those." I wasn't quick enough to say, "Well, I wish my legs still worked, so I guess we're about even, are we?"


Questions, questions.

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A link to my latest Times column. I could have continued my exasperation at the reaction to Cerrie Burnell's arrival on CBeebies, but it's so ridiculous that I'm not sure it should even be up for discussion. For those of you  who may be out of the loop, I'm sure the linked story will fill in the background.

Reading the comments people made about how her only having one arm would 'scare the children' disturbs me greatly. It shouldn't make a difference to anyone's reaction, but when one has become disabled, this kind of story can just add to the feeling of being 'seperated' from a 'normal' life. I'm sure I would have been appalled that people could be so, well, stupid, even if I hadn't broken my back.

 But I did break my back, and that probably makes me a little more conscious of what it's like to face people's preconceptions. And in a way, it's easier for me. I am merely sitting down, but otherwise 'normal'. The chair is pretty conspicuous, so there is less chance of a double take, and I don't have to decide whether to attempt to disguise my disability. That said, I have been toying with the idea of constructing some kind of car-shaped costume to wear when I'm out.


Beach-bummed

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...or not. Today we hit the beach, only I stayed on the concrete path by the road as I have particularly 'urban' tyres on at the moment. Mind you, even mountain bike tyres struggle on sand.

 It's a hard world to leave behind, watching surfers, paddlers, splashers, sand-castle builders and general beach layabouts enjoying one of the most naturally fun places an able-bodied person can go.

I have to rebuild a bit after days like today, refit my defences. Too many days like this on the spin and I must admit I struggle. Still, at least the sun shone, and the beer that I am just about to open is a cold one.

And then there's always gems like this one sent to me by my brother. However noble the intentions may have been, some things are just plain odd. And what's with the girl second from left? Does she just have some kind of head/underwear-based disability?

Dolls.jpg

Shopped

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A morning spent knocking over aisle displays in the shopping emporia of Islington. What fun! It's infuriating how many shops have clearly been laid out in order to give the correct widths and turning spaces to enable a wheelchair user to negotiate the space with ease, only to have the branch manager or some other plank clutter every last piece of floor space with displays of tat that no-one really wants.

 You can tell that it's stuff no-one really wants, as it doesn't warrant a proper shelf space. It's usually hilarious knick-knacks containing any of the following words- golfer, Dad/Mum/any other relative, friend, willy, best, chocoholic, worst, shot, party, imbecilic, symptom of the worst excesses of our wasteful, consumption obsessed economy, etc.

I took a break from arranging these aisle displays under my wheels and went for a coffee and a sandwich at a well-known sandwich chain that rhymes with get-a-sponger (well, almost). Having purchased my food and hot coffee, I realise that all the 'eat-in' spaces consist of high stools and shelves at my eye level. I grumbled at the staff, though it's not really their fault, and they offered to help me with anything I might need. A nice offer, but I couldn't see them getting out a jigsaw and a hammer, so I declined graciously.

Then I spent five minutes playing the get the sugar and spoon into the cup of scalding coffee game. The one where you try and keep the hot liquid out of your eye/ off your lap while still managing to drink it and look nonchalant at the same time. I am indebted to my time spent playing wheelchair basketball, as I can now hit a three-pointer with a sachet of sugar with relative ease.

The coffee fired my system up enough to enjoy the neon display on a hoarding in Upper Street which is an aesthetically pleasing version of a left-brain/right brain test which highlights something called the Stroop effect (no, nothing to do with how many waffles you can eat. One for any Belgian readers, there).

The idea is that you have to read the colours and not the words...colour.jpg

Suffice to say I got them all right, then ran over three people waiting at the pedestrian lights before dropping off the kerb and causing a delivery van driver to have kittens.

Under the influenza

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Before you all start the whole 'Man Flu' thing... No, not me this time, but my beloved wife P who has succumbed to a proper feverish, aching  'flu.

Meanwhile, R has retained the cough of an asthmatic miner who smokes 40 Senior Service a day.  It is an endearing sound that only serves to enhance the glamorous shine of the perma-snot on her top lip. The combination of colds and cold weather makes me suspect that it will remain there until the big thaw.

So far I have dodged this particular bullet. Not quite sure how or why seeing as I've had every cold in the UK in the last few months. Perhaps the cold virus wants more of a challenge. My immune system up to now has used the bullying victim's tactic of lying down and hoping they get bored.

Of course I have enthusiastically joined in the mutual reassurance of parenting where we all get together over a coffee and tell each other how it's really good for our little cherubs to go to nursery/school and come down with everything short of bubonic plague. It helps to strengthen their immune systems, we say. Mind you, if mine is anything to go by, it doesn't count for shit once you become a parent. I have been cheerfully joining in with the big germ Swap Shop for months now, and I just keep getting sick. Go figure.

 So just for once, I get to look after my family rather than the other way around. It make take me a little longer to do some things, but it's good to feel useful. The only thing is, it has coincided with me increasing my dose of Amitriptyline. The result is that I am spending a significant part of the day wandering around the house in a daze when I'm not taking the odd nap. Maybe I'm not being useful... Maybe I just think I am. Maybe I haven't written this at all, but merely thought it. Ouch. My head hurts...
 
Talking of hurt heads. On a more cheerful note, I leave you with this gem. The more times you watch it, the funnier it gets...


Sleep walking

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Happened again last night, thankfully. No, dear reader. I'm not suggesting that my paraplegia is 'cured' by my being unconscious. Now that would be confusing, wouldn't it? Imagine having to fall asleep at the bottom of the stairs in order to wake up at the top. At least long-haul flights would be more bearable.

No, the walking I am referring to occurs in my dreams. The funny thing is that on some subconscious level I am still aware that I am disabled, and so in dreams I affect a slight limp. Last night's slumbers were interrupted by frequent bursts of pain that woke me up. This is not that uncommon, but last night it was more persistent. And for some reason, my limp became more pronounced, and actually slowed me up.

All this leaves me extremely unsettled by the possibility that I may eventually be paraplegic in my dreams.

Other news...

I shall be reading from my book and discussing the writing of it on Monday 13th October at 8pm in Stoke Newington Books, should you find yourself in the neighbourhood (London's 'bohemian' N16 area for anyone who is overseas). Entry is £2.50 in which includes a glass of wine, apparently. Bargain.

InviteSNb.jpg

Fifth column.

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It's now up on Ouch, the BBC disability website. It still feels strange for me to be writing for a disability website, because I still find it strange to call myself disabled. As if I'm some kind of outsider, the new kid in school.

I know, silly really. I mean, surely the wheelchair stands as pretty incontrovertible evidence. But here's the thing: I am a complete novice at interacting with the world in such a different way. I still look at shelves and light switches, stairs and ladders, and I instinctively reach for, climb up, generally react in the way I used to before my accident.

That's not to say that I spend my time flopping hopelessly on the floor as I try to put one foot in front of the other, but more that I do these things in my head. I see things as easy to get to when they are nigh on impossible without assistance. And that's just in our home. It's even worse in the big bad world.

But on some level, I like it that way. My miscalculations and misguided optimism at overcoming obstacles links me to my old life, the way I was. The way I still am in my head.  Denial? Perhaps... but I'd never admit it. (Geddit?)

That's why I like pictures like the one below. Sure, there's a wheelchair in it, but me? I'm just sitting on the grass...
satongrass.jpg

Launch.

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And so... the day is upon us. Launch party at Waterstones book shop in Islington, London, 6-8 pm.

Smoke 'em if you've got 'em (only make sure you do it outside, what with the smoking ban, and all). Sound of plaintive harmonica drifts over the scene, as I sit in thoughtful pose, polishing my fountain pen (a gift from my mother), and making sure it's loaded.
The books have arrived, the drinks are due to land just before us, and then we have to work fast, loading the fridge and setting up defensive piles of books before the first wave comes in.

Enough. All I really have to do is try and nail a signature that looks the same twice, and speed my handwriting up to cope with the highly absorbent paper. Nervous? Moi?
You betcha.
I have made a few notes as to what to say, but I fear that I may be the only wheelchair user there, which could be rather embarrassing. I'm hopeful that there'll be at least another two, and I'm not sure what the problem would be if I was wheeling solo, it just seems right to have a few others around too, if only to show that I have made friends in the last three years of membership of the Spinal Cord Injuries Club.

The only thing I haven't done yet is slap plenty of ibuprofen gel on my neck, as there are not going to be many chairs for A.B.s to sit on. Which reminds me...

One of my first encounters with a public servant after my injury was at a benefits office, when this very helpful and rather nervous lady of about fifty started to give me the information I needed, only to stop suddenly and say out loud, "I'm just going to sit down so that I have come down to your level."
And I thought, "It doesn't really work so well if you TELL me why you're doing it."
Ah, the joys of disability awareness training.  I shouldn't snipe, she was helpful, it's just that I find some people's nervousness about doing the wrong thing can often disable THEM completely.

I move out, offering a stiff necked salute. See you on the other side.



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