Busy, Busy, Busy!

At the launch of Disability Sheffield

At the launch of Disability Sheffield

It’s been a crazy couple of months. It started with a trip up to Sheffield to speak and compere at the launch of Disability Sheffield. It’s really great to see so many of these disability led organizations springing up all over the country, giving disabled people a real voice and ensuring we support each other as we fight to achieve equality. Met some great people and hope to go back in 2014.  The Midlands is a hot bed of disability activism for sure.

Telling it like it is at Imperial College

Telling it like it is at Imperial College

Next I gave a speech at Imperial College London as part of their Disability History event. We tend to forget that alongside disabled students, colleges and universities have many disabled staff and this event was to launch the Imperial’s disabled staff forum. Another superb event, run by some really committed people for the benefit of everyone at Imperial. It made Diane’s day as she always wanted to go to Imperial to study Physics. I hope that in the near future I will get the chance to work the Diversity team there, both with the staff and students. One of their big aims for next year is to get more people to identify themselves as disabled and you all know what a fan of disability pride I am… so watch out.

Waiting to see Mr Jones

Waiting to see Mr Jones

Then Diane  and me took some time out for some fun, and went to the 02 Shepherds Bush Empire to see Howard Jones. I was invited by the man himself after we got on so well when I interviewed him for my BBC3CR radio show. I was really looking forward to it, both as we deserved a bit of fun and as it was Howard’s 30th anniversary in the music biz. Synthpop heaven! Sadly the Empire access is pretty poor and before the show got the hits section we had to leave. I won’t bore you with the exact why, but I do wish venues wouldn’t just sit on their laurels and think that temporary access provision that made them legal when the DDA came into effect nearly 20 years ago will suffice forever. I have heard from loads of other disabled gig goers that they also have had problems with the venue. Come on 02, you could make this venue amazing. I am available if you need any advice!

Outside the SIA offices in Milton Keynes

Outside the SIA offices in Milton Keynes

The crazy thing is that only a few days earlier I popped up to Milton Keynes to attend a training session on taking out Equality Act cases. Run by the Spinal Injuries Association and given by disabled lawyer Jonathon Fogerty, it gave everyone who took part the knowledge of how to use the Equality Act to our advantage. I plan to write a fuller blog about what I took away from this day later on, but for now all I can say is The Equality Act – Waste of Space! I am also unsure if you can sue a venue like the 02 Empire as they do have access, it’s just crap.

All smiles at NCCA Xmas drinkies

All smiles at NCCA Xmas drinkies

We were then invited to a Christmas Drinks party at the Langham Hotel on Regents Street for the NCCA as they celebrated the cycle ride across the country by their special Santas, delivering presents to children currently fighting or who recently fighting Neuroblastoma. As this is the type of very rare cancer I had as a baby, and as the charity is also based in Camden, it seemed we were destined to work  together. It was an amazing night, made even more magical when the Santas delivered presents to one survivor and her sister.  It was blissful to see two wonderful little girls (pictured) tearing open the wrapping paper to get at the gifts within, and even more joyful to see their happiness at what they got. And it was only December 2nd! It also made me remember how lucky I am to have beat this cancer, especially as I did it back in the late 1960’s!

Outside the Beeb

Outside the Beeb

Lastly I learned my lines and got myself all ready to attend a special casting even for disabled actors at the BBC. Organised by the Equity Deaf and Disabled Members Committee, the Creative Diversity Network and the broadcasters, it brought together disabled actors and casting directors in an attempt to show how much great disabled acting talent there is out there. It’s a common claim from the broadcasting industry that there isn’t enough disabled talent, and so the DDMC decided to show that was not the case. With the help of Equity staff and the CDN we put this event together so hopefully in the future we will start to see more disabled people in TV dramas. Maybe even me eh? I should also say I am very proud to be the chair of the DDMC at the minute. Another passionate group of disabled people trying to make the world a more equal place.

With Christmas coming up, I doubt things will be letting up either. I do have something else to announce to the world, but that will happen on Monday.

And with that I am off to put my feet up, before it all goes crazy again…..

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How do you like dese tragedy?

Right, it seems that the entire media wants to focus on the tragedy of the disabled, whether we have managed to triumph over it or not. I have always been against this kind of coverage but it seems that people who agree with me are being ignored. So if everyone out there wants to hear the tragedies of disabled people I intend to be on that band wagon. (I do hope you getting the irony here… it doesn’t always work in the written medium)

So where shall I begin? Well at the beginning I suppose. I was born in 1965 to Michael and Joyce McGrath (pictured above). They had been trying to have kids for three years and were overjoyed when they found they had fallen pregnant. When I was born my Dad ran round my home town of Luton shouting with joy, hugging strangers and handing out cigars. But as soon as I came home they began to worry. I just would not stop crying. Nurses and doctors visited and told my Mum she was a panicky parent. This went on for five weeks. Just screaming and screaming. Then I went quiet. My parents rushed me to an aunt who was an ex-nurse and she said something was wrong… very wrong. They took me to hospital and it was soon discovered I had cancer. It was in fact an Adrenal Neuroblastoma, which even today is very difficult to beat. I was extremely lucky, as my surgeon had just read about an experimental drug that was being trialled and he applied to have me put on the trial. So with a major surgery, radical radiotherapy and this new chemotherapy, which lasted for five years, I now faced an uncertain future. In fact my [parents were told not to expect me to live long. “Go home and enjoy the time you have left with him” my Mum was told.

So home I went. That’s me with my Mum, all ill but very loved. I didn’t die though. Obviously. In fact I went from strength to strength. There were hick ups. I got two huge sores on my feet, which nearly killed me with infection, and I broke my right leg almost in half, while trying to pick up a train that I was playing with – kind of forgot I couldn’t walk that well – but when I got to the age of five my parents were told he is in remission. Cancer free. I had a future at last. At which point my Father died, from a heart attack. My Mum had a nervous breakdown and life sort of fell apart. My Dad’s parents were awful, and our lives were thrown into turmoil yet again. My brother came out worst. My Mum had to spend so much time looking after me that Steve had kind of become Dad’s kid. So when Dad suddenly disappeared he couldn’t understand what had happened. Mum tried to explain, but he was so little the “Dad is with Jesus” didn’t help much. So the great news of my beating the big C didn’t matter much once Dad was gone.

I started school and was immediately bullied for being the limpy kid. I fought back, but as anyone who has been the target of the bully knows it’s not fun. When I was eight, my Mum remarried. Now I will admit that by now both Steve and me were horribly spoilt kids, but our new Step Dad was… let’s say very strict. As he is still around I won’t go into it all too deeply, but it wasn’t much fun. But time passed as it does and I was soon nearing an age where I could protect myself. But at the age of fifteen my spine collapsed. It actually happened at Wembley Arena at the farewell gig of my hero Gary Numan. I had great seats, in the fifth row, but had to remove myself to the back as the pain was unbearable. I somehow managed to get myself home and fell into bed. The next day I arose early as it was the day of my German O Level (no I did not spend the night studying – I was a Numanoid!) but when I tried to get out of bed I collapsed into a heap on the floor.

Oh, this is the last picture I had of me standing up. I’m in the middle, with my Mum and brother Steve. Anyway, I was still sent to school in a cab, but when I arrived I collapsed again and was rushed to hospital. While I was there I was told I was dying as I had cancer again. But no it was actually a huge spinal collapse, caused by a side effect of my experimental chemo as a baby. After two major operations (14 and 15 hours), two bouts of MRSA and one heart attack on the operating table I spent nine months in hospital only to leave in a wheelchair. No one told me at this time I wouldn’t walk again, and so I spent three years fighting to get back on my legs. After this time I went to my surgeon to say I was giving up, only to be told I never had any chance but they didn’t tell me that as they didn’t want to depress me. Nice.

Now at this point I feel I should stop. I could go on about being in an abusive relationship for years, or my second broken back just as my career was taking off, just over ten years ago, that nearly killed me and has left me in chronic pain, but I actually want to examine that fact that while this might be read as a list of tragedy it all led me to be the person I am today. And I like who I am, so everything that has happened is must be a good thing. To always go on about how becoming disabled is a tragedy means that nothing good can come of it, and to make anyone disabled who succeeds triumphant means that those who are having a hard time coming to terms with it must be lacking something that those super humans (dig, dig C4) have in spades.

All I know is that my disability has shaped my life hugely, and has allowed me to have experiences that most non-disabled people can only dream of. I have been a TV star, toured with Gary Numan, and lived a rock and roll lifestyle second to none. I then met and later married the girl of my dreams, someone so amazing that she cared for me while I recovered from my second broken back and even made it fun. Yes she made six months on bed rest fun. It may sound weird but I know part of what she loves in me is the person I am because of my disability and so for that, if nothing else, I refuse to see any tragedy in anything illness or disability that has entered my life.

But I could easily make my life a list of one awful event after another. I could have then made a big deal of how brave I’d been to triumph over the crap cards life had dealt me. And the media would have lapped it up, but I just cannot. Instead I will say what I have always said… Disability was the making of me. It set me free and allowed me to live a life that I wouldn’t give up for a second. Not for legs that work, not for being in tip top health, not even if I could fly. My disability is super positive element in my life, and I just wish that the media would focus on how positive being disabled can be. Just once would be nice.

So as you watch the stream of stories over this Paralympic period, try not to be sucked into the feeling that everyone has in some way beaten the worst thing that could ever happen to them. I mean if they weren’t disabled they wouldn’t be at the games, they’d be at home watching them on the TV and missing out on the chance to represent their country in a global sporting event. Disability can be a positive thing and if more people believed this then if it ever came into their lives they might be able to cope better, recover quicker and rebuild their life to become better than it was pre-disability.

Right got that off my chest. I’m currently dying my hair ready for the Paralympic Opening Ceremonies tomorrow. Got to look good, even if I am one of 4000. If you see a red head in a chair who is out of time… it’s probably me!

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Good news: Big Smiles and No More Mr Grumpy!?

Baby Mik, during my treatment for cancer – the spiky hair was caused by the chemo!

Today has been a good day. This morning I had an appointment with a surgeon, who gave me the great news that I don’t have cancer! “What’s this?” I hear you say. Yes, for the past few years have been suffering the joys of undergoing a series of tests to find out if I had the big C. I don’t want to go into what the symptoms were that gave rise to this need to check whether the disease that I beat as child had reared it’s ugly head again, but anyone out there who has had Mr Cancer come to stay in the hotel that is their body will know that from the moment you are given the all clear and Mr C has been evicted, you live with the fear that this unwanted guest may return at some point in the future.
The bastard thing about cancer is that you are never told “You’re cured”. Instead you are in remission, and even though I was given that news so long ago (41 years ago when I was only 5) that I don’t remember it happening the fact that the disease that is so feared by everyone might come back haunts my every waking hour… and some times my dreams too. I am sure this is the same for other members of the cancer survivors club. Every time you feel ill or have a strange pain you become terrified that the cancer is back. I know I have spent my adult life thinking that any cough, twinge or cramp is the first sign of another battle with my bodies inability to reproduce it’s cells. I must admit that it has made me a bit of a hypochondriac, if a quiet one. No, instead of vocalizing my worries I quietly pop off to the GP’s and get myself checked out. Of course the fact that I have beaten cancer already tends to make them panic a little too and the tests start over again. 
The annoying thing for me is that every time I have a major issue with my health, such as my spinal collapse when I was 15 or my recent spinal hassles after my car accident in 1999, my surgical team get really panicky and send me off for a series of “routine” tests, as if I don’t know what is going on. Nothing sets off alarm bells like surgeons being secretive. When I was 15 I was actually told that my cancer had returned and I was going to die. After spending 24 hours laying in bed thinking of all the things I’d never get to do, my chief surgeon popped by to tell me there’d been a mistake and I didn’t have a tumour. I know that this experience really effected the person I became and made me enjoy my life, but it also forced me to face what it might feel like if the cancer ever did return. So every time I get the feeling that something is wrong, I relive that day. Of course I do it alone, as admitting what is going on would be admitting weakness would it?
I am so obsessed with keeping my fears quiet that even my lovely wife didn’t appreciate my feelings and so as I sat waiting to get the results this morning I ended up snapping at her about why I was so grumpy recently. This is why I am writing this. I feel so crappy about being Mr Grumpy that I felt I should put out there the feelings that I am sure many other cancer survivors carry with them, and tell the world that those of us who have beat the C can, on occasion, be right moody. I know that over the last few years, and many other times in the past, I have been a right unbearable git on and off. Short tempered with a short fuse. At the minute I am rehearsing for a role in the Paralympic opening ceremonies and I have not been the joy to work with I would have hoped to have been. Of course everyone would totally understand if only I told them what was going on, but that is just not part of the process. Not only does anyone hate the idea of being thought of as ill or weak, but it’s especially difficult if you still don’t know what tomorrow might bring. It’s just you have that “feeling” that something is wrong and everything else seems to get on your nerves. You really are forced to appreciate your mortality way too regularly and this makes everything that impacts on your life unacceptable. Thus your ability to cope and patience disappears. All that happens is you annoy everyone around you and come across as a totally f**k head.
So with today’s news I feel I should apologise to my wife and anyone else who has been at the sharp end of my moodiness through out my life. It might sound like an excuse, but I know that I feel like a weight has been lifted off my shoulders today and I hope to be a happier, smilier person from now on. Well as happy and smiley as a git like me can be. I hope you can forgive me if I did have my grumpy hat on in the past? I promise to try harder next time I get the fear, but don’t hate me if I don’t manage it. My past track record doesn’t give much hope I feel.
To anyone else out there who is going through this at the minute, whether you are waiting for results or know someone who is, I wish you well.
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Dear Diary….

To everyone that reads my blog, I have decided to change what I use it for. You see I have lust landed a post of columnist for the new magazine PosAbility and kind of want to keep a lot of the stuff I would have once blogged about for publication. Instead I thought I’d turn this blog into a diary type affair. Of course there’ll be comment, as nothing can stop me moaning, but with a more personal edge.

2012 started off as a weird year. I spent most of the festive season struck down with a succession of illnesses. While most were just the standard Man Flu stuff, I also spent most of Xmas reeling from one of the fun elements of my disability. I don’t know how many of you agree with me, but I know I have always been amazed at how little information you get from the medical profession when you are disabled. I have always found that if I had been informed about what the future might hold for me thanks to the effects of my disability I might have made different choices. Ever since I a baby, the treatment I had for my cancer has been effecting my body but I have never been told in advance what might be coming. I understand that not many people survive cancer for as long as I have, and that being used as a guinea pig for a new treatment as I was means that no one really has any idea of what is around the corner but it would have been nice to have been given a vague hint of what might be possible. Take my spinal collapse when I was 15 for example. Only after it collapsed did my medical team inform me that they were planning to fix the issue with my back, but they wanted to wait until I had taken my exams. My spine collapsed on the day of my first exam, my German O Level. Now if I or my family were included in this decision, and I am sure we would have preferred to have my back fixed. Especially as I ended up having to go back a year to take my exams anyway… oh and I got a present of paraplegia out of their choice to wait too.

As I get older I find that other issues are coming up from the radiotherapy and chemotherapy I had as a baby, on top of the usual getting old crap. They are nothing too terrible at the minute, but they do mean I have to keep an eye on things as I rush towards old age. I know that many of them could have been lessened if I had known about what my future held when I was younger. Mainly as I might have changed the way I lived and thus have had some kind of control over my body. It’s funny but I have always been obsessed with controlling my body, so I know I would have been obsessive about looking after myself. I mean I am now a tea total, non smoker, who eats healthy and tries to exercise all in an effort to ensure I am in control of my body, yet when I was younger I can only describe my lifestyle as… unhealthy… very unhealthy! I admit I had a pile of fun and am not sure I would have wanted to miss out on what a good time I had. However it would have been nice to know not only the obvious issues I was dicing with but to also have known the problems I might have been causing that were special to being me. Then no one is to blame for whatever happens except myself.

Of course, this is all a bit self indulgent. I am one lucky little sod really as I beat cancer and a really nasty one too. Neuroblastoma is a real pig of a tumour, and I am one very few people who have beaten. OK that number is growing, with a large amount of help from the Neuroblastoma Society. They fund research into finding a cure and give help and support for families going through treatment. I am a patron and working with them really made me realise how lucky I really am.

Having said that, I have also had some annoying experiences around access so far this year that demonstrate how far disabled people have to go in this society. The first thing that happened was I have been asked to leave a local campaigning group after I insisted that access was as important as other local issues. It is a collection of local interest groups all giving their opinion on a new development where I live in Camden. I don’t want go into it too much but on many occasions I have found that my attempts to make people understand that access cannot be bolted onto buildings as an after thought, but needs to run through a design from the ground up, have been met with hostility. Mainly as many of the other people in the group had their own areas of interest. The people who were interested in heritage seemed to be especially upset by my fight to make Camden more accessible. I have never understood why heritage and preservation bodies find the idea of making changes to improve access so sacrilegious. They seem to imagine that the only way to make somewhere more accessible is to destroy their precious heritage, and do not care that maintaining it at any cost leads one section of our society to be left out in the cold and may even not be able to experience or witness the heritage at all. But whatever the individual group’s area of interest, surely access should be of interest to all of them? I know there are methods to allow all of us to work together in such a way that we can all get what we want. Sadly I shall no longer be part of this group, but will continue to fight for a more accessible Camden. At the minute Camden is a very inaccessible place, and I will not rest until it gets better.

I realised just how inaccessible the world can be for disabled people this week, when I attended the funeral of my mate’s father. It was held at the same place as my Dad is buried, so I went up early to visit my Dad’s grave. However I could not get to it, as it was in an corner of the cemetery that I couldn’t get to without pulling a wheelie over other people’s graves. Something I felt I couldn’t do, partly out of respect and partly for my own safety. So instead I had to ask my wife to take a photo of the headstone to allow me to see it. I haven’t seen it since I went into my chair, 31 years ago. As I sat there in the freezing cold, trying to look at a photo on my wife’s smart phone it really hit home just how far away an inclusive world still is.

Anyway, here is that picture. That way not only can I look at it whenever I want, but so can members of our family who are spread all over the world.


That’s all for now, until next month,

Mik

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Another Busy Bank Holiday

After planning how to avoid that wedding, it seems that I got myself into a rut of doing things when I should have been enjoying the bank holiday. Instead of waving flags and going to a street party, I decided to rebuild my studio. The doors my wife and I decorated, in a very successful arty Jackson Pollack style, were ready to be hung and so we spent Thursday doing the ultimate nightmare… building an Ikea wardrobe. Now I’ve been through some awful things in my life, and met people who have been through much worse, but I am sure everyone will agree that the thought of putting together Ikea furniture fills them with terror. With only a little arguing we managed to get it finished and ready to fill with my collection of classic synths, bits of computer, set of electric drums, keyboard and mic stands, a classic video game called a Vectrex and loads of other bits of junk. So as the morning of Friday dawned, and TV became a no-go zone, I faced the task of moving my studio gear around, building some desks (from Argos by Hygena, very nice and much easier to build), setting up a collection of computers and their peripherals (so many blooming wall warts!) that I seem to collect like some crazy hoarder and preparing to dive into another horrific task… wiring up my recording studio. I have just finished today, Monday May 2nd at around 3.30pm. Only took all weekend.

While I am over joyed that I now only have to set up the software before I can start creating retro synthpop electroclash, and annoying my neighbours, the craziest thing about what I spent this weekend doing is that I had big plans for April 30th. That date is special to me, as it was the last day I walked back in 1981. I attended Gary Numan’s farewell concert at Wembley Arena but during what was going to be a key moment in my teenage life, an even more important moment occurred. Unknown to me, my spine started to collapse and just as my teenage hero stepped onto the stage I was wrecked with agonising pain. I fought through the first half of the superb show, but eventually I had to find somewhere to lay down. So I battled to the back to this massive venue and watched the rest of the show laying a wall. I was so far away from the stage, after being in the third row (I was even in front of Trevor Horn!), that my hero was a tiny little stick figure. Getting home to Luton was another battle, but I was helped by my date that night. (Thanks Karen) I awoke the next day and was still in pain and found it hard to stand. However it was also the morning of my first O level exam, German. So I called a cab and went to school. When I arrived I found I could not walk at all and collapsed in a heap in the door of the cab. I was rushed to hospital and my life as a wheelchair user began, after 15 years walking with the help of a leg brace on my right leg.(Believe it or not, my school sent a teacher to my hospital and I took my exam in a side ward – and passed!) It transpired that the treatment I had been given as a baby for cancer had an unknown side effect, and caused my spine to be deformed and was too weak to carry the weight of my growing teenage body.

aged 17 – A goth before it was called goth or what!

Strangely I did not find becoming a wheelchair user a bad thing. Instead I saw it as a wake up call. I had spent my childhood being a very good boy. Hard working, very studious and well behaved. I was taking a pile of exams, and had over 10 job offers. Yet I hadn’t done anything fun. I had always wanted to dye my hair, dress weird and go to clubs and pubs like most of school mates. Hey it was the post punk blank, and New Romantics were just starting out. As I recovered from major surgery and came to terms with a new life in a chair, the life that been planned for me no longer appealed to me. A good job with prospects, meeting a local girl, getting married and buying a house in the same street as my parents was were I had been going but now I wanted more. I wanted to grasp life by the horns and ride it for all it was worth. So I sat my parents down and told them that from now on I was going to enjoy myself. They supported me of course, as they are cool, and so I found myself living the kind of life I had only dreamed of as a walker. I purchased a couple of really basic synths and a drum machine, formed a band with my best mate at school and started playing gigs. I dyed my hair, had hair extensions put in and wore more make up than a nightclub full of girls. I began the life I now have. So I see that day, when I lost the ability to walk as a good day.

on stage at the Electric Ballroom, on tour with Gary Numan 1991

But in a way it is fitting that I spent the 30th anniversary of that day building my music studio. It was learning to play music that gave me a direction when I was getting used to my life as wheelchair user, and gave me the chance to end up touring Europe with my hero, Mr Numan, in the 90’s and gave me the foot into the media, as well as allowed me to meet my wonderful wife. Music was essential to making me who I am, and I really hope that young disabled people understand that there are more ways to find a direction than sport. I hated sport as a walker, and truly found myself going “Hooray, no more sport!” when I was told I would never walk again. Music, art and creativity is an equal method to happiness and success, if not a better one. While with sport it is either win or nothing, artistic creativity is an end in itself. I never got the chance to release an album or get on Top of the Pops, which were all dreams as I began playing music, but I had a great time trying. Yeah, I didn’t get the chance mainly due to discrimination on the part of the music industry (I’ll tell you more in another blog), but I really lived the rock and roll lifestyle throughout the last 30 years. Maybe a bit too much sometimes!

As I look back on the last 30 years I do so with happiness. I had a great time, and created a Mik Scarlet that I would have loved to be as the spotty teenager who went to that Gary Numan concert. In fact if I had known then what was ahead of me, I wouldn’t have told a soul that I was about to loose the ability to walk. No, walking is just a means of getting around, but the life I have had since that day has been a fantastic roller-coaster that I wouldn’t have missed for the world. So now you know why I wanted to celebrate. The fact I didn’t isn’t a bad thing, as I am getting a bit old for all that partying. Instead I am now ready for the next 30 years. Studio set up, hair dyed, make up ready and a wardrobe to die for. All I can say is watch this space… anything could happen!

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