Monday, 30 August 2010

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.


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?

Wednesday, 25 August 2010

Cured By Mistake... The truth behind the headlines

In this months Disability Now magazine I have an article that focuses on what happened to me after my last spinal surgery in 2003 (Choosing To Sit Tight, DN issue 34 P45) and since it came out I have had a lot of interest from various publications wanting to know follow up on the story. However I found that many people did not really understand what the article was about. So I felt I should fully explain.

It all started in 1999, when I was involved in a major car accident. The accident left me with a damaged shoulder, which when you're a wheelchair user can be a real hassle, as well as an increasing problem with back pain. After a few years of examinations, the surgical team at the RNOH Stanmore discovered that I had broken my back. Of course as I was already Paraplegic it was quite hard to spot. My spinal had been left in state after it had collapsed back in 1981, so it was understandable that the new damage was so hard to find. The break was vertical too, and not the usual horizontal type. So my spine was slowly collapsing on itself. This as causing all the pain, as well as changes in the bits that did function below the original break. It took a further year or two before a surgeon decided he would try to fix the break. So in 2003 I had a 15 hour operation, where my surgeon (Mr Ben Taylor) removed one of my vertebrae and replaced it with a titanium ring, and supported my spine with two titanium rods that run from the bottom of my rib cage to the top of my hips. During the surgery Mr Taylor also removed any old scar tissue and used a new technique to ensure much less new scar tissue formed after the op.

After six months on bed rest I got up to find that I had regained feeling in my legs. Ever since I had woken up six months earlier I had been worried about weird sensations where I thought my legs should be, and as soon as put my feet on the floor after so long in bed I discovered that I could feel again when I felt the floor under my once numb feet. Slowly I noticed movement coming back too. As it became clear that something had happened during my surgery that had allowed nerves to come back, the discussions began about walking again. It wasn't going to be like you see in the movies or in the soaps, and after a few weeks in the physiotherapy rooms I would be up and walking. No I needed a series of surgeries to replace my right hip, that had been damaged during one of my 1981 operations, as well as a replacement knee and ankle, as they had poor bone density caused by over 20 years in a wheelchair. Even after all that I would probably need to spend nearly a decade in physiotherapy to get my muscles back to full strength. So I would be around 50 before I might be able to walk. And it was just a might. With all this to go through just to get out of my chair I turned it all down. Most people in my life were totally freaked out by this decision, except my wife. She knew how much I felt that if I did go ahead I was being a traitor to other disabled people, and we both didn't see the point of going through so much to see if I might walk.

Now this is where the story in DN, and the BBC TV documentary, Can Walk, Won't Walk, ended. But there is much more to finding that nerves that have been dead for years now work. Not only do most people who hear what has happened find the idea hard to believe, but they also don't understand that after so long as a Paraplegic your body adapts to it's new way of working. To expect it to go back to working as it was indented quickly is fool hardy. In fact there have been many times in the last 7 years when I wished I was still the way I was before the op.

You see getting back your feeling is OK, but the thing I feel most regularly is pain. The hip that is damaged hurts all the time, so does my permanently fractured right ankle. I got that joining in with PE at school when I was 14. It had healed but broke again during the years in my chair. So that's a broken ankle and dislocated hip. All day, every day. Then there's strains, pulls and injured toes, when I smash in to walls and doors, which all wheelchair users do from time to time. The most maddening thing is that I now can feel some functions that are normally ignored by your brain. Things like food passing through my guts. Sounds weird, but I guess that bits of my middle had lost feeling, and now it's come back my brain isn't used to filtering it out. And of course the spasms your get with an injured spine now hurt like hell too. As well as all that, I also have a real problem with the way my body feels. My left leg feels really long, as I am six foot three, but my right leg feels tiny. They are almost the same length, but the body map your brain creates has decided that they are different lengths. So being cured had caused me tons of pain, and a body that feels like Quaimodo's. Great. Oh, and I can feel how numb my arse gets sitting in a wheelchair all day.

This is what annoys me about those people who go on about curing Paraplegia. Unless they find a way of fixing it just after the injury, it isn't just a case of making nerves work again. There are a pile of other things that need putting right too. Surely there should be equal focus on making the world a more accessible place, and making society see disability as just part of life's rich tapestry. I am sure that most people who have had a spinal injury for quite a while would find themselves in a similar position to me. Yeah it sounds great, and I am sure many people dream of a cure, but the reality can be more of a nightmare.

At the end of the day, I have spent all of my life being at the cutting edge of medicine. Many times I have had experimental surgeries or treatments and know that in time they lead to great things. While some of the elements of my surgery may lead to ways of fixing spinal injury in the future, they are a long way off yet. Trust me.

Friday, 20 August 2010

Positive Blog No. 1

I think I can safely say I may have over reacted in my last Blog (Fame... makes a man think things over). I am sure it was partly to do with the approach of my 45th birthday, which turned out to be a great day spent that I spent with my lovely wife. It's funny but I have always found myself reacting in dramatic style to land mark birthdays. Maybe it's because life does seem to store up major events for key ages in my life.

Let's see. It started with birth. I was found to have a rare cancer, Adrenal Neuroblastoma, at six weeks old. I had been born with it, but it had been missed in hospital. So I under went years of treatment and was very lucky to survive it. Then at the age of five, I was given the all clear of this very serious type of cancer. But the celebrations didn't last long as a few months later my father died of a heart attack. At the age of fifteen, the age at which I was declared totally cured of cancer, my spine collapsed. It fell apart at Gary Numan's farewell concert at Wembley Arena, which kind of ruined the whole thing for me I can tell you, but completely collapsed the next morning. This was the day of my first exam. German "O" level. (No way was I going to spend a night studying for an exam when Gary Numan was playing!) I was rushed to hospital, and my school sent a teacher to sit with me while I took my exam. Strange as everyone thought I had cancer again and was going to die. Luckily I didn't, but it meant I spent two months in a terminal ward. That made me grow up quickly I can tell you.

It took quite a while for me to recover from this set back, and during this time I became an extreme New-Romantic (check out my website for photos). I spent my late teens looking like an alien clown. As my 21st birthday grew near, I suddenly felt the need to grow up. I dyed my hair brown, grew a beard and got a real job. This lasted until I hit 21, when I realised I didn't feel any different and went back to being a weirdo. Then I got sacked from my job, after I broke my toe in their lift. I decided to pursue a career in music. I swore that if I wasn't doing it professionally by 25 I quit.

As the age of 25 reared it's head, I was discovered by a TV producer and started my career on TV. This rolled on and I grew to be quite successful and well know. As I hit 30 (on my 30th birthday actually) I finally got together with my wife Diane. At 35 I had the car accident that broke my back for the second time. At the age of 40 I got married and I had to choose whether to have further operations to allow me to walk again. I turned them down, as I didn't think the surgery and years of phsyio with only a chance of walking again was worth it. I am also a very proud disabled person. The wedding was fantastic!

And that brings me to 45. This really is the middle of your life nowadays. Making it to 90 is pretty likely, so I now have exactly the same amount of life ahead of me as I have had behind me. I really did start to wonder what life had in store for me this time. As the big day approached I started to get worried, but now it has hit I feel fine again. 45 years is a blooming long while. Can fit a lot of living into that. Whatever event life has in store for me, I will beat it as I have every time before.

So please ignore my last blog. Put it down the strange fact that once you start a blog, you can put fleeting emotions out there for all the world to read. Today I feel great, and ready to face the world. Who says how I'll feel tomorrow?

(Just read this back. This is SO self indulgent. But hey, what else are blogs for?)

Tuesday, 17 August 2010

Fame... makes a man think things over

As I hurtle towards my 45th birthday, I've had a weird week. I wonder if I might be about to hit my mid-life crisis. Let me explain.It began with a visit to my chemist. While queuing to collect a prescription, another member of the queue turned to me and said

"You live in the same street as me. I see you wheeling up and down the road... oh and of course I saw you on TV" That's nice, I thought, still being recognised.

"Yeah" I said.

"You used to be more handsome back then" was then next comment.

"Nah" I replied "Just younger". We went back to queuing and smiling at each other. My smile hiding just how much a throw away comment can hurt.

Now fame is weird. Once people feel like they know you, which is one of the side effects of being let in their home via their TV screen, they feel they can say whatever they like to you. Can you imagine going up to someone in the street and informing them that they are looking uglier than they used to be years ago? No, neither can I. Yet it happens all the time. A few months ago while in Boots (I seem to spend too much time in chemists - although this time it was for hair care products, which I obviously spend a fortune on) a woman said hello and then informed me of how fat I had got. OK I know I've spread with age, but she was... huge! So surely she must know ow it feels to be called fat by strangers. Yet fame meant this was fine.

When I was at the peak of my celebrity, way back in the 90's, I had all manner of problems. People would just come up and insult and even attack me or even worse, attack my loved ones. I even had a stalker, who threatened to kidnap and rape me. Nice. The most annoying thing was that all the time I was presenting the TV shows that meant the public felt they owned me, I was being paid well under the going rate. (Too many TV companies had the attitude that disabled talent deserved less pay. In a business where people can get paid £100,000s per show I was lucky if I got £100s per series. I would have earned more if I stacked shelves in any famous Supermarket) So I couldn't afford the security that I really needed. Hence way I started going to private members clubs and the like. To be safe.

But why, if fame was so bad, did I continue? Why am I still fighting to get back into the media world? Well fame has it's up side too. No it's not all models and parties, although there were a few. The best thing about fame is being taken notice of.

For ages now I have been trying to get Camden council to wake up to it's responsibilities around access for disabled people in the borough. This week the local paper, the Camden New Journal, ran a story about experiences and my blogs on the issue. Since the article, I have been contacted a councillor who wants to start up a committee to examine what an be done to improve Camden and it's access. Now if I wasn't "Mik Scarlet - Broadcaster and Journalist" would the local paper written the story and would the council have taken notice?

And that's my mid-life crisis. I feel I am at a cross roads in my life. The media always focus on new talent, as the current search for presenters to work on the Paralympics demonstrate, and I could never be considered "new". I have had to take years off from working to recover from my spine surgery back in 2003, and even though I feel I am ready to go back to work, will I be able to get back into an industry that everyone knows is almost impossible to break into? Especially if you already used to be in it! The other factor is do I want to anyway? As I have already said, fame is no picnic, and the rewards are not always that great.

I know I have gained many skills through my time as a musician and broadcaster that would apply to many other professions. I keep asking myself is it time to grow up and stop seeking a way back into the media. Are the rewards of fame worth all the hassles?

So what would you do, dear reader? Do you think there's a Mik shaped hole in your TV viewing? Do you think I should fight to fill it, or go out and get a real job? I really need your advice.

Thursday, 12 August 2010

Still here

Believe it or not the reason why I haven't blogged for a while is because I haven't much to blog about. I haven't gone crazy about bad access and gone postal, although the local paper, the CNJ, is going to write an article about my experience of access in Camden, or sunk into a black depression or anything. I spent this week either recovering from a heavy weekend, thanks to our friends Eve and Ashley, stuck in an MRI machine, being scanned within an inch of my life, or at an audition. I won't say anything about that in case I jinx it. So I've been a bit too busy to find something to write my usual rant about. Amazing huh?
Next week is my 45th birthday, so I will probably have something to complain about there. I mean... 45! So watch this space for stories of age and falling apart.

Monday, 2 August 2010

Left on the outside... again!

Well I might want my blog not be focused just on disability, but it seems life keeps pulling me back to the subject. Today I have been made to feel the way I did about my disability when I first started using my chair back in 1981, excluded and second best.

This morning I decided that I have hit that age where I need to start visiting the gym to fight the joys of getting old. I wheeled up to the Mornington Crescent Leisure Centre in Camden, ready to join up a get fit. I had already visited it twice before. The first time I was turned away as they had no wheelchair access. However they were about to undergo a refit and access was going to sorted during that. I was a bit shocked that in the 21st century there could be sports centres that still weren't accessible. So much for Sport For All eh? The second time, I was turned away as the ramp was broken. Yes it seems that access has not been built into the centre, but instead they got a temporary ramp that would be put out if anyone on wheels needed to get in. Not an inclusive solution, but one just about fits the current laws. I was told that next time it would be fixed and that I would not need to ring ahead, and so with this in mind my wife and I set out for visit number three.

While I sat around outside, my wife went inside to get the ramp organised. After a short while I could hear my wife talking and instantly knew she was upset. She was not shouting or anything like that, but when you've been with someone for nearly 15 years you just know. I could also tell that she was trying to keep whoever she was talking to from going outside to talk to me, to prevent the fire works that she was sure might ensue. However the door to the centre opened and my wife and a member of staff appeared still deep in discussion. I was informed that the ramp was unavailable to me at present as it was stored in a room where a class was in session. The staff member begrudgingly said she would get it from the room, as long as we understood it would disrupt the class. My wife tried to point out that it was not our problem and this kind of emotional black mail was very unfair. I tried to keep my fury under control, kind of failed and told the member of staff that I would not want to come into any venue that made me feel so excluded. We left and walked away with me shouting like a mad man. Sorry to anyone who saw a peroxide haired crazy wheeling down Arlington Road around 11am.

I hope that anyone reading this can understand why I was so cross. Why do people think it is OK to treat disabled people this way. It was nothing to do with me where the ramp was, what was happening in that room or what trouble getting it might cause. The ramp should have been easy to hand and where ever it was, it should have been fetched with a smile. I have as much right to enter this sports centre as the people in the class have not to be interrupted, and I sure as hell have the right not to be made to feel guilty for wanting to use the place. Time and time again I am facing this attitude. To be excluded from things able bodied people take for granted really gets to you after a while. But to be made to feel guilty for feeling upset about it cuts to the core. Especially when you trying to get into a council run amenity, that is there for everyone. The maddest thing about this is that this centre has accessible gym equipment, but doesn't have level access. Who the hell thought this was a good idea?

For all of my adult life I have been a wheelchair user, and have been massively of proud of being one. The early years where spent getting used to my new life on wheels and fighting to get places in my home town of Luton more accessible. Back then it was the norm not to have access, but people really wanted to get it right. I had quite a good success rate, and slowly the town became quite a good place to live for us wheelies. Typically I then moved to London for the night life and for my career. Of course London is actually like a series of smaller towns all connected together. The first borough I lived wasn't too bad, and it got better during the period I lived there. The same happened in the second borough. Even in central London, which is not the most accessible place on Earth, everyone I met really wanted to get you in. So I was allowed into places that appeared to be totally inaccessible, thanks to helpful staff and my ability to crawl up and down stairs. Nothing could stop from a good time! Seeing that disabled people wanted to get into their venues made the owners want to make sure they were as accessible as was possible. Things did take a few steps back when the DDA came into law, but slowly we getting back to where we was before everyone ran scared from the new law.

Then a few years back I moved to Camden. In my blog of July 18th I wrote about how Camden seems to going backwards on the issue of access. I can honestly say that I have never lived anywhere that makes me feel so excluded on a daily basis. I am growing to hate where I live, and I am sure you will agree that Camden council, it's staff and residents should hang their heads in shame about that. What upsets me the most is the fact that Camden has become a place where disabled people should either put up and shut up, or fight for rights that they should now be entitled to by law. I have only lived here for around five years, and this constant battle to live a normal life is really starting to get me down. I almost never go out in Camden, a place I once spent almost every night of my life in as I am sick of being turned away from places due to poor access, of never knowing if somewhere that was accessible last week is still accessible this week and of being treated as if expecting the same service and experience of living here as I would get if I could walk is unreasonable and demanding.

To be honest I am so sick I being angry about this, and feeling the need to write about it. I am sure you are sick of reading about it too. I will try to write about something else next blog. But if my blog seems to go quiet, watch the news. I may have cracked and gone postal on Camden's inaccessible arse! (Joke... ???)