Thursday, 19 December 2013

Access Denied

You may remember that this past Sunday I shared an article written for the Daily Mail by Sophie Morgan. Sophie had planned a night out at the famous Ritz hotel but there was just one problem. Sophie is a wheelchair user and was therefore unable to ascend the stairs at the front of the hotel. No dobut someone asked her, as they often ask me, whether or not she can walk at all. This is the standard question of any assisting staff when they learn that you can't walk and that you would like their help. You can't walk? Not at all? Preposterous. Everybody can walk a bit, can't they? No. Sophie got in to the Ritz, but only through the back door via a grubby sounding alley lined with black bins.

Anyway, this got me thinking about a few things. And we all know how dangerous that is. Firstly I thought about how amazed I was that the Daily Mail should carry a story championing the rights of anyone who is not a middle class, white, able bodied person, but also I thought about my own experiences of access problems complicating my social life down the years.

Not that it is just a problem when you want to go out for a meal and/or a few drinks. Earlier on today I tried to leave the building which shall remain nameless for my lunch, only to find that someone had parked a big white van as close to the exit door by the disabled car park as they could without actually driving through the building. I had to go all the way back and through to the other side of the building to exit through the main entrance/exit, and then go back on myself to get to where I wanted to be. I could have especially done without this extra journey today as I am not feeling very well at all. On Friday, just three days after avoiding dialysis by the width of the gap left for me by the white van driver, I hit the ale very hard indeed. I've had a variety of problems since. Bladder pains, kidney pains, nausea, dehydration. You name it, I have had it this week.

All of which is especially worrying with Christmas coming up. I recognise now more than ever the need to look after what is left of my ravaged organs, but I'm frankly quite buggered if I am going to hang around for another 20 or 30 years grimly drinking coke and 'getting the crisps in' like the old mizzo from Early Doors. It hasn't helped that in order to reinforce my belief that everything is alright and I'll be able to celebrate Christmas properly, I've had to get up and go to work. Some would argue that the sensible thing to do would have been to phone in sick and relax, try and get myself right for Christmas, but I'm troubled by the thought of justifying going out on Friday night if I haven't turned up to work through the week.

Back to the plot and Sophie's little predicament. The fate of all wheelchair users to some extent. Undoubtedly the biggest problems arise when you, as a wheelchair user, have the temerity to want to mix it socially with the rest of society. We all know the tale of how my dearly departed friend Paul and I were ousted from a club at which we were the most regular customers for being a 'Fire Hazard'. In so doing, and although we didn't know it then, we gave this column its name. Sophie comments in her piece that some of the access problems she has faced have prompted her to want to just stay in and share a bottle of wine with her friends. That's Sophie's Choice. But that approach is not for me, I must say. It's letting them win. If I want to go, I go and bugger the consequences. The only difference between now and when I was first embarking on my journey of drunken debauchery at about 19 is that now I'm less inclined to want to go anywhere if it is going to cause me more problems than it is worth. But rather than stay in like Sophie, I'd probably just go somewhere else.

I had no such decision to make when I was a teenager. I remember a few months after splitting up with my ex-girlfriend we had found out that she was in Crystals nightclub in town. Crystals was the most putrid, granny-grabbing dive in the town, up against some pretty stiff competition I can assure you. It was what Obi Wan Kenobi might have called a wretched hive of scum and villainy. I had always known it wasn't very accessible and never had the inclination to go, but at that particular time I was going through a transitional period. I'd been dumped and I wanted to know why.

So I climbed the stairs.

Ignoring the queue I headed straight for the entrance door, bailed out of my chair (wildly assuming that some disapproving bouncer would carry it up the stairs for me, which amazingly they did), and proceeded to climb up the stairs on my arse. Step by step. Like a toddler. I hadn't decided what I was going to do when I got in to see my ex. I was either going to beg her to come back or I was going to smack her over the head with a fire extinguisher. I wasn't sure which. In the event, and after all that hard work and the absolute mortification of my friend who tried in vain to pull me back from this madness, my ex wasn't even there. I can't even remember whether my friend bothered to come in with me (he'd have had to be lifted in as he also uses a wheelchair) or whether I just toddled back down from whence I had came. My actions were extreme and ridiculous, yet they stand now as a shining example of how not to let access issues beat you down. So long as you don't mind the fact that everyone thinks you are certifiably insane. I did something similar at Lineker's Bar in Blackpool with no real motivation that I can think of other than to not let the bastards win. I was out with some university friends who suggested going in. I gave it a go, I got in.

Another great display of bonkers barrier-breaking was provided by the aforementioned Paul who, some years later, found a novel and splendidly stupid way to overcome the fact that the lift in Nexus nightclub was not working one night. Well, that's what they told us. The old 'the lift is not working' has been offered as a stock excuse for not letting the crips into nightclubs since Stephen Hawking was a rampaging, 17-year-old lager lout. Well he might have been. Anyway, Paul had spotted the fact that a group of Saints players had chosen to frequent Nexus that night. The question of why would you go there when you are on the money they were on is one of life's imponderables, but there they were. Presumably unsatisfield with the company on the ground floor, Paul persuaded one or all of the Saints players to help carry him up the stairs to the second floor. Maybe he wanted a change of scenery, maybe he just wanted to see the view from the balcony, I don't know. But like me, if he wanted to do something there was little point in trying to persuade him not to. It took me several hours to find him once he'd gone up there. I wouldn't mind but he didn't even support Saints. Hated them. Their every victory was a dagger through his very soul. Not that there were that many of them to worry about in those days.

With that in mind he would not have enjoyed the Saints end-of-season bash that my other friend Paul and I (all of my friends are called Paul, it keeps it simple for me) managed to crash into after one of our Super League Grand Final wins some years later. They all went to the Sin Bin, formerly Appleby's. I had never been to Appleby's previously, partly because of it's pitiful attempts at accessibility, but mostly due to the fact that its hey-day was well in advance of the time when I took to the bottle. I missed that particular boat. In latter years the Sin Bin was called Imperial, a bar known only for the fact that it was the location at which Saints' star Sia Soliola was beaten up by a group of rotweillers. I mean bouncers.

Back when we went (and probably still to this day) the only way in for wheelchair users was to be physically lifted up the stairs by anyone willing. Fortunately Paul and I were drunk enough to allow this to happen. We're not really the heaviest of men, so none of the Saints players seemed to blink too much at the prospect of hauling us up a few stairs. It wasn't until we got inside and had a drink or two, however, that I remembered that we would need disabled toilets. Which they didn't have. Of course not. They were never going to. So I did what any disabled person possessed of a penis might do in an emergency and took a bottle into the kitchen. Whereupon I found a certain Saints player of old in a compromising position with a star-struck young lady. The sights we have seen. But when you've got to go, you've got to go.

Notable mentions in the category of apalling and lazy attempts at access also go to the Yorvik Centre in York, where you have to book three days in advance if you are a wheelchair user because they can only have one inside the buidling at any one time, several castles which allow only access to the ground floor and justify this by charging you less, and quite a lot of Spanish and European bars which are ok to get into, but should you try and empty your bladder you will find the toilets behind a door of the kind which Alice In Wonderland needed a magic potion to negotiate. And who could forget the Chinese Buffet in town, whose policy it was to leave a note on their lift informing potential users that it was out of order. Why? To stop the people who shouldn't be using it from using it. But doesn't that stop the people who should be using it from using it too? Well, yes.

So the moral of the story seems to be that if you have a disability which general consensus suggests prevents you from doing a certain something, while you are still young enough not to care bloody well do it anyway. Even if it does make you loook ridiculous.

Tuesday, 10 December 2013

Old Before I Die

I went to the hospital today. To the nephrology clinic. The kidney specialist, in other words. Members of my family may want to look away now as I recount the tale of this extraordinary, terrifying but ultimately positive and encouraging visit.

Those of you who regularly frequent these pages will know that in the summer, upon my discharge from Whiston Hospital, I was told by a urologist that not much had changed since my last scan six years previously. That news was the culmination of an agonising day's wait for the scan results, made more unbearable by irresponsible talk of permanent catheters and piss bags by doctors who knew about as much about my personal circumstances as I do about The Apprentice.

Imagine my surprise then when I was told by Mr Khalid, yet another new specialist I had never laid eyes on before, that I could expect to begin dialysis treatment for my ailing kidneys within the next two to three years. Two to three years. When he told me I let those words hang in the air for a second, unable to conjure up a sensible, coherent reply. While dialysis treatment is not a death sentence, not by any means, it is at least a life changing course of action reserved only for the desperate. The gravely ill. So to hear this was not so much surprise as abject horror. With all the reassurance of a Tory politician letting us know that we are all in this austerity thing together, Mr Khalid informed me that I wouldn't need to leave work, that they could train me to administer the treatment to myself at home, and that following the treatment a kidney transplant was definitely a viable option. So long as I don't have any heart problems. You know? Like the sort of palpitations that accompanied my raging potassium levels just a few months ago.

So at this point I am trying to think of what I can do in the three years I have before my life changes forever. I'm working on my Bucket List as he talks to us about going along to see the Dialysis Education Team on my next visit which, again reassuringly, won't need to be for another four months or so. I've always wanted to go back to Australia after an all too brief visit to Adelaide in 1993. It was a basketball trip. My fellow basketballers reading this, past and present, will know that that basically means the inside of hotels and sports halls. Not bright lights, wonders of the world or Christmas on the beach. Although we did see a real live koala bear in the foyer one night. So there's that. And I'm going to New York next summer. I'll very probably be in Little Italy on the night England play Italy in the World Cup in Brazil. Which just leaves going on a cricket tour with the Barmy Army and having a novelised version of Memoirs Of A Fire Hazard published. It's a lot to cram into three years.

And then the tide turns. I get my reprieve. Early in the conversation Mr Khalid had said that my kidney function is at 24% and that, for a man of my age, that percentage should be somewhere in the 60's. Then later, Mr Khalid places my kidney function at 28%. Looking for something to hang on to I pull him up on this, but he responds by telling me that either way, they are not going to last much more than the two or three years he has already estimated. I'm disconsolate, desolate, inconsolable and all of those things, but I want to know how that can be when the urologist at Whiston had said that not much had changed in six years.

"It was only 30% when I had my scan six years ago." I say;

"How can it be that it has fallen only 2% in six years yet you expect it to pack up completely within three more years?"

"Was it?" asks Mr Khalid;

"I'm so sorry. I did not know that. You can forget that two or three years, then. It probably won't happen that fast. I'm sorry to have upset you."

He continues on this theme, apologising to us profusely while he and Emma have another discussion about how it can be that he can come to wild conclusions when he doesn't have all the information. After Whiston in the summer, I am beginning to think that this is how all specialists operate. Scare the bejesus out of the patient and then everyone will feel so much better when it turns out not to be as bad as first feared. It's dizzyingly clever when you think about it. I came out of there feeling euphoric, a whole new approach to life developing at a searing pace as I plodded over to complete the formalities of the blood tests. If I wasn't doing it before I am going to start living for today in a big way. I will require dialysis and probably a transplant one day, so I have to keep that at the back of my mind and live my life accordingly.

All of which could be bad news for Memoirs Of A Fire Hazard, which considers negativity and cynicism as it's stock in trade.

"Well tonight I'm going to live for today so come along for the ride..........."

Wednesday, 4 December 2013

International Day Of Lip Service

Before we begin with today's offering I just want to share something with you.

I had been in the disabled toilets at the place which cannot be named for literally five seconds when there was a knock at the door. I was still decent at that point so I opened the door. There was nobody directly outside but out of the corner of my eye I could see a man actually running away as fast as he could. I can only think that he caught a glimpse of my wheelchair and ran away out of pure shame. No doubt he expected that the person in there was not disabled, and just doing exactly what he was doing, using a facility that they have absolutely no right to or need for on the basis that real disabled people can't possibly exist. Then again he might well have been disabled, but if he was I haven't seen a disabled person run that fast since Oscar Pistorius. And if it had been Oscar he wouldn't have knocked, he would have just shot me through the door. Allegedly.

And so to the matter in hand. Yesterday I found out via the dubious gift of Facebook that December 3 is International Day Of People With Disability. Now the first question which leaped directly to mind was...'what for?'. Regular readers of this column will know that I am all for promoting the rights of disabled people but it seems to me that promoting those rights and awareness of issues surrounding disability for just one day a year is a complete nonsense. Why are we doing this for just one day when we should be doing it all of the time? You might just aswell have an International Day Of Wiping Your Arse, or an International Day Of Washing Your Bollocks. Respecting the rights of disabled people should be as automatic and mundane as either of these. That it is not is a sad reflection on our society not just here in the UK, but globally.

International Day Of People With Disability has been promoted by the United Nations since 1992. Assuming that 1992 was the first and that the suits didn't just sit around their table and say 'let's think about the cripples next year', we have now had 22 International Days Of People With Disability. Without bogging you down in the mathematics, that is roughly 0.28% of the days since 1992 in which some people somewhere may have taken a moment to reflect on disability issues. Or at least spent a couple of terrifying minutes walking around in their front room with the lights off to try and get an idea of what it might be like to be blind. Probably.

If it is not bad enough that we get only one day a year of respect and awareness of our tricky plight (or 0.28% of all days whichever way you want to look at it), it isn't even that well observed if my experiences are anything to go by. As I explained I wasn't even aware of it myself until yesterday, and the whole event passed me by completely. Nobody made a special effort not to use disabled toilets when they demonstrably don't have to, nobody knocked on the door and asked if they could take my chair for a spin just to get a feel for how I have to lug myself around on a daily basis. Nobody I know had a dart at using a catheter the size of a boa constrictor. Nothing. International Day Of People With Disability should actually be called International Day Of Lip Service. I actually don't know who observed International Day Of People With Disability or what they did to observe it. It is all very reminiscent of 'Kiss A Cripple Day' which, although clearly a made up and fruitless ruse by some chancer trying to attract attention from the opposite sex, would have been a wonderful opportunity for you able bodied people to demonstrate just how aware you are of disability issues. I can't remember what date Kiss A Cripple Day is, but what I do know is that only Emma was a willing participant in my world. Reports that Joss Stone and Jennifer Lawrence left the country and hid on Richard Branson's remote island until it passed are unconfirmed.

Next week, I participate in International Day Of Not Ranting At The Ignorant.

Monday, 2 December 2013


Memoirs Of A Fire Hazard has been censored. Gagged. Had it's mouth zipped like the gimp from Pulp Fiction.

I wouldn't call it a reprimand, but it was made clear to me today that I am no longer permitted to mention the name of my employer on these pages. Furthermore, I am not allowed to include the name of my employer on my Facebook profile if I am then going to go on to describe a negative experience at work. I don't write about work very often anyway. There is very little humour in getting up half an hour before you go to bed, and then spending eight hours or more staring at spreadsheets or processing travel claims. Very little mileage in publicly alienating people who probably have it in for you anyway. It's a battle that is unwinnable. Believe me I would much rather be writing about falling out of my chair or leaving my wheelchair wheels at home than anything that goes on in the office. Yet should I feel the need to write about my occupational travails in future I will have to do so without revealing the name of my employer. Failure to comply might very well result in my being blown to bits by an out of control robot built for law enforcement, but more likely they will settle for informing me that I am in breach of their internet usage policy. Presumably persistent breaches of this policy will result in their corporate behemoth foot connecting with my backside. The Thought Police have pulled down my pants and thoroughly rogered me.

It seems that my employer does not want to be linked in any way to the fact that I sometimes have a shitty day within their exalted premises. That's bad press. Apparently there is such a thing as bad publicity. But there are a couple of things about this. Firstly, I am a depressive. It is perfectly possible that I could fall into a vault of tits and chocolate and still have a shitty day. Less likely than during a day at work, but still possible. There is no rhyme or reason for a depressive, no logic. I don't know why I feel shit some days, and my employer really shouldn't feel so responsible. It is not necessarily a reflection on them. Secondly, how many people do they think will get a negative idea of the organisation from my columns? I noted darkly earlier today that over the last few days I have seen at least five photographs of food on Facebook which have received twice as many 'likes' as anything I have ever written. I'm so small time that you can barely see me. An average of about 70 people visit these pages when a new article is published, many of whom no doubt take one look, think what the fuck is this, and go back to the 27 episodes of The Chase that they have in their Sky+ planner. Yet my employer still wants to silence me.

All of which throws up wider questions about censorship. On the whole I am dead against it, but even more so if it affects my own work. If someone wants to watch mindless violence or sweaty sex then that is their choice. Likewise if I want to write and therefore inform a third party that actually work was quite crappy today because certain people who always remains unnamed in any case are behaving like arseholes, then I should be able to do it and be left in peace. This column might be of piddling importance in the grand scheme of things but for me it is catharsis. A chance to blow off some steam, write down words that I wouldn't say in front of my mother, and generally release tension. Without it I would probably end up rocking backwards and forwards and dribbling for large parts of my day, and I would be incapable of serving my employer in any case. Removing the name of my employer may seem like, and probably is a small price to pay to allow me to go on steam-blowing, but if we are to censor it in this fashion then where will it end? Maybe with my employer enjoying even further input into this tin-pot operation. Maybe I could email it to the press office and have them check over it before I hit publish. Or perhaps they could write it for me. No doubt they have an army of monkeys sat at keyboards just waiting for the nod to take over the creative side of Memoirs Of A Fire Hazard. Well, they might if it were that important.

Disclaimer: The views expressed here are my own and do not represent those of my employer, for whom everything is fluffy and wonderful and criticism or the merest hint of employer dissatiscation is anathema.