Results tagged “disability” from Looking Up

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.

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.

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...

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...

...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.

 

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?"

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.

...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?

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...

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...

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.

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...

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.