Sill Ill

What a crazy month March has turned out to be. I had planned to write my second travelogue, about a recent weekend away in Penzance, but I will save that for later. Instead I wanted to write something about why March has not been a high point of 2012 for me so far. Last week I attended a conference for Disabled Workers up in Manchester, and gave a speech about my experiences in the media. I think it went over well, and it was great to meet so many committed and passionate disabled people, all keen to help each other ensure that the work place is a friendly and accessible place for all. While I was there I started feeling a bit unwell, and when I got back home this continued. By the start of this week I felt very, very unwell and went off to visit my GP.

It transpires I have a serious infection. Now over the past few years I have been treated for a pressure sore, which it turns out was actually this infection in it’s early stages, so I think you can all guess where my infection is. Yes I have a gammy bum. Nice. I was given antibiotics and told to rest. By Wednesday this week I was feeling even worse and so I went off the the local A&E. The whole experience really showed how much the medical profession still see disability through the medical model. Obvious I suppose, but it does lead to some serious mistakes. I mean my GP has been treating me for a pressure sore for ages, as wheelchair users get pressure sores, and didn’t even think that it might be something totally unrelated to my disability that could be easily cured by some pills. At the A&E I found myself trying to explain to a series of doctors that I could feel parts of a lower regions, I had full use of my bladder and bowl and that my condition was a very rare. I am one a very small group of people to have survived the cancer I had as a baby, and the treatment I had led to side effects that effected even fewer people. Like just me. So all of their experience of wheelchair users, and paraplegia is useless when dealing with me. Of course try to make doctors understand this is next to impossible. How can a patient know more about medicine than they do?

But before I go off down the road of another rant about doctors and disability, I must stop myself. For this is not what I wanted this blog to be about. Instead I wanted to talk about the way I am feeling while I lay in bed, pumped full of super strong antibiotics watching day time TV. All this feeling ill, being unable to do anything while all your plans unravel took me back to how I felt as a teenager when my back collapsed. I spent nine months in hospital, three of them in a terminal ward (as the doctors were sure my cancer had returned and I would soon be checking out – I hope this goes some way to explaining my deep mistrust of the medical profession, but I assure there are many more mistakes and misdiagnoses to go towards that explanation). While in this ward of death almost everyone of my fellow ward mates died, some in very unpleasant circumstances. Not the kind of thing a teenage boy normally has to deal with, especially as I was sure I would be joining them in the morgue fairly soon. While I laid there waiting to meet the grim reaper, I listed all the things I would never do. Dye my hair, go to a night club, and of course…. have sex. So when I was told not to worry, and I only had a knackered spine that would stop my walking and disco dancing for ever, I was very…. very relieved.

I then promised myself to live life as if every day was my last. And boy did I? I have had the kind of life that most non disabled people could only dream of, and I have built some superb memories to look back on next time I am expecting a visitor from Mr Reaper. But recently I have found myself worrying about stuff, and trying to create a secure future for me and my lovely wife. You know, grown up stuff that can suck the joy out of life in a major way. If you add that to all the worry that this crazy government and it’s even crazier policies on disability have brought to bare on most disabled people’s lives and I have really lost that joy for life. But as I lay in bed, either boiling hot or freezing cold as my body fights this damned infection, I find myself remembering the goal I had in my teens. Sod the Tories and their drive to force disabled people to either swim or sink, screaming, and the fact the place where I live seems to get a little less accessible every time I go out. However much the world seems to view disabled people as a drain on societies coffers, who unreasonably demand equal access to the world around us even if it means altering historic buildings (sorry but I am currently in a battle with a Camden preservation body about ensuring wheelchair access to the local canal and “heritage features” have become dirty words in my house), life is too short for all this arse.

Instead I must seize the day, and enjoy my time on this planet. Of course that doesn’t mean I shouldn’t fight for a better world. Just make sure I enjoy the fight, and really enjoy the successes. I know that I have won some serious fights here in Camden over access and am now taking this experiences to the wider country. But I must remember to enjoy the process and the outcome. I must also remember not to let the bastards grind me down. If I get turned away from a building for being a fire hazard I must not let it ruin my day… or night. Instead I must just go elsewhere, have a great time… and then enjoy suing the people that turned me away. Whatever the issue or barrier, I must stop seeing them as a reason to get down. No they are a joyous thing, something to fight against and a fight to win. And if I don’t win, then sod them yet again. Not only will I not be going there again, but neither will my mates and family, and I’ll write a stinking article about them for this blog.

I think it is the one thing that can give us disabled people a clearer view on life. Once you’ve tasted how precious life is, the drive to enjoy becomes stronger. Yes it can also make the injustices we face cut deeper, but maybe it will drive us all shout louder against those injustices. All I know is that now I understand that once I am well again I plan to try to enjoy every minute of my life, whatever is thrown at me. So come on life, give it your best shot.

PS. My wife has just quipped that her pain in the arse now has a pain in the arse. That’s why I love her.

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The Paralympics, the Portrayal and another word beginning with P.

This week all of TV land has marked two years to go before the launch of the Paralympics with massive coverage of the event. Most London news programs spent the week featuring stories on Paralympic sports and the start of the build up to the historic event, and Channel 4 launched two shows that marked the beginning of it’s exclusive coverage of the Paralympics in 2012.

Now I’ve never been a big sports nut. Partly due to my interests being much more focused on artistic pursuits and partly as I have always found the sports fraternity’s obsession with impairment and over coming the physical side of their disability via physical activity a little off putting. So I watched all of the coverage ready to be let down. However I was actually really impressed. Yes some of the local news coverage was awful, with the usual patronising interviewers and scripts, but all in all even I found myself hooked to sports TV. Amazing.

The first dedicated show I watched was That Paralympic Show. This program wasn’t exactly my cup of tea, but I could see it was aimed at a younger audience and I am sure it succeeded in getting it’s target viewers excited by Paralympic sport. I don’t usually enjoy watching those shows where celebrities have a go a being disabled, but getting Alex Reid, the kick boxing husband of Jordan, to have a go at Dressage kind of made sense. Whatever I felt I could see the show tapped into today’s celebrity obsessed youth and might play a role in changing how young people see disabled people. And it had Ade in it so it had to be good.

That Paralympic Show

The next part of C4’s Paralympic build up was their flagship program Inside Incredible Athletes. When I read what this show was about I cringed. With it’s focus heavily on impairment and I dreaded how bad this show was going to be. Boy was I wrong. Yes, it did have it’s moments where my toes curled, but whether any of us politically aware disabled types like it or not disability sport does have to focus on what is physically different with the people taking part. Add this to the fact that many people in the disability sports world are fairly new to their disability and it is easy to see why it can seem little too impairment driven in it’s focus. However much the computer graphics explaining how various Paralympic stars disabilities played a part in their excellence really did ignore some of the politics of disability (Medical Model vs Social Model and all that), the superb way the sports where shot and explained more than made up for it. In fact I will go as far as to say that there were moments when even I got excited by the sports covered on the show, and that really is amazing. By the end of the show I was really looking forward to seeing how C4 will cover the event, and to watching more of their coverage in the run up to the Paralympics. I even found myself wanting to find out how to take up a sport. Maybe Dressage! (Wheelchair rugby is just too dangerous for this wuss!)

Inside Incredible Athletes

Sadly not all the coverage of disability this week was good. We were let down by drama. The BBC comedy crime drama show Vexed featured a story line where a wheelchair using criminal kidnapped a pop star and ransomed her, using how disabled people are thought of as incapable to get away with it. But it wasn’t another storyline where the baddie was a cripple that upset me. No it was the fact that another role for a disabled actor went to an able bodied thespian. Actor Dylan Brown, best known as the vampire Seth in Being Human, played John Paul the episodes comedy bad guy. I have to ask myself why do these able bodied actors see nothing wrong with playing disabled? Would they black up and go “I am de black maan”? I very much doubt it. I even auditioned for this part, but was told I looked too able bodied for the character. Well not as able bodied as some who was bloody able bodied! Time after time I hear from casting directors that there isn’t enough disabled talent out there, but surely this kind of show is where disabled actors learn their skill? I mean it’s not like the show was an acting master class or anything. A cameo role like this is exactly where up and coming disabled actors hone their skills. Not only that but having disabled talent playing disabled characters makes the show more valid. A real missed opportunity.

Vexed

So on the whole a great week for disabled people and the media. Hopefully the creative and exciting way disability is being covered C4’s sports output will change the way disability is portrayed through out the TV and film industry. Fingers crossed eh?

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