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Cool Runnings

By Disability, Lifestyle No Comments

I wanted my title to be slightly ironic, as the training that i did today was in no way ‘Cool’ it was very very hot!

Ive decided to take part in a half marathon in October on behalf of ‘Enhance the UK’, why? Because i think that Enhance is a fantastic charity that stands for amazing values. So during the next 9 weeks i am going to be updating you with how im getting on, and hopefully adding in a few funny photos!

I have never ‘blogged’ before, but i am very excited about it. I was supposed to create a blog at Uni when i was studying Journalism, but being a typical student i nevered bothered (in all reality i didnt have enough time – i was studying too much…….)

 

So i have set myself a training plan , whereby i built and add a few miles each week. I’ll be training 4 times a week, with short runs during the week and a long run on Sundays. This week i did 30 mins on Tuesday, 45 mins on Wednesday, 30 mins on Saturday and 4 miles today (in the blistering heat!) – in total about 11 miles. I also cycle about 35 week, so hopefully this should help and not hinder.

In all honesty, the only day i found difficullt was Saturday, and this wasnt due to copious anounts of alcohol, i wish! I think i was just tired. I was very nervous about running today because i found yesterday hard, but it wasnt too bad. I could have probably washed the dishes with the amount of sweat i produced, but it went well.

I am very tired this evening and am happy ive got a rest day tomorrow, for my legs to rest a bit. I’ll be blogging every Sunday with an update of how im getting on, so in the meantime please visit my JustGiving page and donate @ http://www.justgiving.com/Catherine-Newton1 .

 

Peace Out Everyone…have a fab week! C x

Kiruna Stamell’s blog

By Disability, Lifestyle No Comments

Kiruna StamellI am an actress, born in Australia but now based in the UK. I began my career as a dancer many years ago in Australia, training with the Beryl Ellis Dance Studios (later known as Ultimate Dance) and then later the University of New South Wales.

In 1999 I got my first professional gig, while I was still studying at University when I made my début in Baz Luhrmann’s Moulin Rouge. I used the pay cheque to move to England and study Shakespearean and Jacobean Theatre at LAMDA over the summer.

Mik Scarlet in Geisha Top

Sex, sex sex… It’s all you ever think about!

By Lifestyle, The Love Lounge No Comments

When the lovely Julia asked me if I’d write an article on disability and sexuality, my first thought was “Oh no, not again”. Throughout my twelve-year career as a TV, radio and print journalist I have been asked to cover the topic many times. I have even written manuals on the subject. I am constantly contacted by TV companies making documentaries on how disabled people deal with sex and I no longer have anything to do with them. The programs are invariably made by middle class, able-bodied, media graduates that believe that by making a series on how tough it is to cope with sexuality if you’re disabled they are helping us with some problem they perceive us to have.

Mik Scarlet in Geisha TopThe fact of the matter is WE DON’T HAVE A PROBLEM WITH SEX!!!!!!!!!!!! Our main problem regarding sex is the able bodied fascination with our sex lives. I mean do you see whole series looking deeply into the mechanics of heterosexual able-bodied sexual activity…? No. Disabled sex is put in the same category as kinky sex, strippers, queers and transsexuals… all great TV freak fodder. Great ratings grabbers. Just with us the TV companies feel they are helping us poor cripples in some way.

Now before you think I’m going to spend pages ranting about discrimination, I’m not. As I thought about this article I saw away of putting down in words the truth. Of course a disability can cause problems with sexuality, whether it be physiological or psychological. Whether it be the mechanics of paraplegia and the level of spinal injury in relation to the level of sexual function that can be achieved or the image we may have of ourselves as sexual beings living in a world that is becoming more and more preoccupied with the body beautiful.

Another thing to consider is… what is disabled? Never forget that a person with a visual disability is going to have a totally different experience to some one like me, a wheelchair user. I myself have always wondered if a blind lover would be more tactile and sensual. Once, while very drunk at a BBC Christmas party, I annoyed one of my colleagues by asking if her deafness caused her to orgasm loudly. To me not having any true idea of how much noise she might be making during sex would obviously mean she would be a screamer (I know, SOOOO politically incorrect). But see, even us crips are intrigued by how other crips “do it”. Also, every individual wheelchair user will be different in his injury and how it affects them physically, so any serious look at disability and sex can never really capture everyone’s experience of sex, just the common experiences. Experiences shared by everyone, whether or not you’re disabled

So as I can’t speak for all the world’s cripples, I’ll speak for myself. I am a lifetime member of the crip club. I was born with cancer and was one of the fist children in the world to be cured of my type of childhood neuroblastoma. It was a miracle sir, came along and cured they did without a by your leave. The slight nerve damage caused by the cancer left me with a right leg that wasn’t as strong as it should be and so to walk (which took me until the age of five to learn how to do) I needed to wear a caliper (leg brace). Luckily my Mother and Father fought to send me to a normal start school and not a special school. This meant I was educated to the same standard as the rest of the world and was integrated with able-bodied kids from day one of my schooling. I have always been the first disabled pupil in any school I went to, even right up to Sixth Form and Art College. I was always the pioneer that had to assist the school with adaptations. I also had to deal with teachers that had no idea how to react to disabled pupils. I remember once entering a school cross-country run. Now I obviously came in last (that caliper weighed a ton) but my headmaster still made the school applaud me for “bravely” taking part. I felt stupid as everyone was cheering me on for losing. This is where any problems of self-image I have began. Not only was I useless at sport in a school system where sporty kids are looked up to, but I was being praised for being so crap. No one ever praised me this highly for being the school hockey team captain years later. It was my failure that made me stand out. I wasn’t expected to win, I didn’t have to win. Only the disabled live in a world where failure is expected, any success considered a miracle.

So just as I was about to leave school, at the age of fifteen, complications from by my cancer treatment all those years ago caused my spine to collapse and, et viola, I became the wheelie I am today. Now most people, when they hear I was fifteen, say how terrible it must have been. But becoming so much more disabled at this age has always seemed a great thing to me. Before I went in the chair I was the kid that was nearly normal, but not normal enough. OK, it was during the punk thing, so being a freak was kinda cool. Then when Gary Numan hit the charts I was like a pig in shit. Numanoids were always dressed in black, wore make up and, most importantly, didn’t talk. So when I was going through the shy stage I was considered dead cool and thoughtful by the girls in my school. I didn’t know this because I already was unsure that the girls I fancied would want to go out with “the kid with a limp” so I was always just their “Friends”

When I went into the hospital to be treated for my spinal collapse I had the experience of being told I had cancer again and was going to die. For twenty-four hours I thought I’d die a virgin, who had never done any of the things I dreamed of doing. I spent one whole day lying there in the terminal ward, surrounded by people dying, listing all things I’d never do. When I was told my death sentence was a mistake, I viewed the rest of my stay as a means to an end, and tried to make the best of a bad job. I mean I even lost my virginity in hospital to a stunning student nurse! When I got out of hospital it was going to be the beginning of a new me. So I came out of hospital, sat my parents down and told them that the studious, good boy with a great future in conforming was dead. From now on I was going to do what made me happy. I was going to live each day as if it may be my last. I still do!

Young Mik Scarlet as 80s musicianNow while the wheelchair had made me much more grown up in one way, it had given me loads of other shit to get used to. Not only was I in a wheelchair but I had a body covered in scars (this is long before scarification was considered cool) and had (thanks to a doctor trapping some nerves in scar tissue) lost the motor function to my sex organs. As a young man living in a word were erections and penetration was what sex was about, I truly thought I would never be able to make a woman happy sexually. I toyed with being gay (you can receive then, can’t you), but found that stubble and, well, just not fancying blokes made that a non-starter. So I set out to read everything about pleasing a woman. I read so many sex manuals, “How to make love to a woman by a woman” was my favourite. I read up on how to make yourself orgasm without touching yourself at all (a very neat trick in the “E” fueled rave days-really picked up a rush I can tell you). I even read a World War 2 torture manual, because of its chapters on pushing the body beyond its limits, and of course I already knew there are some sick puppies out there! If I did ever find a woman who would go to bed with me, I was going to make sure she had fun. Now don’t forget I had only lost the motor function. This means no hard on, no ejaculation. I could still feel everything. I could still cum, just not produce any cum… (a much cleaner and safer way to be I would discover later). I didn’t even consider me having any fun in my sexual equation; I was only worried about the poor girl that had saddled herself with a spaz. In the end I lost my wheelchair virginity to a friend, who thought she was a lesbian and didn’t want her parents to find out. We went out as a pretend couple, fell in love and became a real couple. And it was great. All that reading paid off. Of course I may be a disabled man, but I’m still a man. Now I knew I could make a girl happy in bed, I wanted more. So I left her (yes I still feel like a shit, even today) and went out in to the world, full of sexual confidence, tongue a-ready!

But where as she had never made me feel less than a man, or feel guilty for going out with an able bodied girl, others did. Between the mind games that consequent ex-girlfriends played, and the way men think any girl with a cripple is just waiting for a “real” man to take her away from her torment, any confidence I had soon disappeared. And this was how my ex’s wanted it. I couldn’t see how much stronger I was than them, both mentally and physically. The public perceive the disabled to be a sickly bunch but in fact, once I got over my spine problems, the only time I’m ever ill is when the pain gets too much.

My ex’s were always ill and weak and were racked with all the self-image problems that today’s women complain of. “Am I getting fat?” “Are my boobs getting droopy?”
Oh well, at least they’d managed to find a boy friend who wouldn’t leave them, I mean he was so lucky to be going out with them. Bollocks to that! They may have thought that out downs and mind games would keep me around but I left every one of them. If they thought they could get better than me, let them try.

Then I met “The One”. Diane’s Dad is a severe epileptic but lives life to the full, out in the real world. He always told her to live every day like it was your last. She had also burnt herself as a baby, and had scars down her right arm. She’d been in hospital, she’d grown up believing no man would want a deformed girlfriend. She’d had ex-partners that used mind games to keep her around. When we finally got together, after six years of me chasing her and her just thinking what a terrible flirt I was, we just clicked. Not only emotionally, but sexually. Together we have been places you people would not believe. I can now safely say my sex life is a million times better than it ever could have been if I wasn’t disabled. You have no idea how the male sexuality changes once it’s set free of erection and ejaculation. Teehee.

Maybe this is why I get so fed up with always being asked about sexuality and disability. You see the able bodied can never understand. To truly get what I mean you need to have a spinal collapse. You need to have my body, my mind, and my partner (hands off!!). In fact sometimes I feel sorry for able-bodied men, with their worries about penis size, their performance anxiety and erectile dysfunction terrors. In my world Viagra wouldn’t have been invented, it would be a waste of time. But not only can you never understand what it is like to be disabled, nor can we. I only know what it is like to me. If this was an article on social discrimination then I could talk in generalities. I know what it is like to be treated differently due to something beyond your control. I even have an understanding of what it is to be Black or Gay, or Female in this world. Sex however is such an individual thing. All you able-bodied types have different sexualities, different turn ons, different responses. Disabled people are no different. The only thing I do know for sure is…

I’M ALL RIGHT JACK!!!!!

Sorry if this article wasn’t “This is how we do it!” That’s our secret and we’re not sharing it with just anyone! They do say that everyone is a disabled person waiting to happen. Well when it happens to you, then you’ll know. There’s a cheerful thought to leave you with. Now where’s that gorgeous girlfriend of mine? All this talk of sex has got me feeling a wee bit frisky…………….

Mik Scarlet

Can walk, won’t walk

By Lifestyle, My story No Comments

(Or “Just when you least expect it, just what you least expect!”)

When I was 15 years old an unexpected side effect of a successful treatment I underwent as a baby for a cancer caused my spine to collapse at the L1 vertebrae. After two surgeries, a spinal decompression and a spinal fusion, and nine months of total bed rest, I left hospital as I full time wheelchair user.
No one told me straight away that I was going to be permanently paralysed, but after years of unsuccessful physiotherapy, I kind of knew the answer when I asked my surgeon;

“Will I ever walk again?”

He tried, as gently as he could to break what he thought would be terrible news.

“No. I’m afraid the nerve damage is too great. We tried our best but I think you must start planning your life in that buggy of yours”.

The weird thing was by then I already saw going into my wheelchair as the best thing that had ever happened to me. Before the chair, I had spent my life being the good, studious son. I did well at school; already had a series of job offers for after me exams without even knowing my results and had a very conventional life stretching out before me. But this was not the life I dreamed of.

Young Mik Scarlet as 80s musicianI wanted to be a musician, play in bands, dye my hair and rebel BIG TIME! It was only the shock of being so ill just as I readied myself to enter the big wide world that woke me up to myself. You see everyone thought I was going to die this time. So as I lay there in my hospital bed all I could do was list the things I would never do.

“Never dye my hair, never go to a nightclub, but worst of all… never have sex!”

So the first thing I did after I wheeled my chair through my front door for the first time was dye my hair. I taught myself to play piano while I was convalescing, and promptly formed a band when I was well enough. I soon met a lovely girl and I lost that pesky virginity. My life was getting better and better at a time when most people would expect me to be at my lowest.

I continued to enjoy my life, living each day as if I was back in that hospital bed, thinking I was dying. My musical career blossomed, and I toured Europe with acts like Gary Numan (my teenage hero) and then went into TV presenting on kids television. One of the shows I presented, Beat That on C4, even won an Emmy and got a Bafta nomination. Things finally started to enter the realm of heavenly when I met a wonderful lady who is now my wife.

Then, in early 1999 I was involved in a massive car accident. The ever increasing amount of back pain I had afterwards led me to visit a hospital.

“Well it appears your spinal fusion has cracked,” the doctor told me.

Yes I’d broken my back… again!

By this time the pain was so unbearable I was taking Morphine all day everyday just to get out of bed and so it was decided surgery was the only way out.

My surgeon, Mr Ben Taylor at the Royal National Orthapaedic Hospital (RNOH) Stanmore, was one of those guys who filled you with confidence. He knew he was good, and made sure you knew it too.

His plan was to take out the damaged L1 vertebrae entirely and replace it with a titanium ring supported by two titanium rods.

“It’s a big job, but don’t worry you’ll be right as rain afterwards”

It was only after the marathon 15-hour operation that he admitted;

“This was the first time I’ve ever carried out this procedure.”

Anyway, first time or not, it worked. The pain went almost immediately. However throughout the six months I had to spend confined to my bed, something felt weird. It was only when I sat up and put my feet on the floor for the first time that I realised I could feel my feet again, after 25 years of nothing. Soon movement started too and so I returned to RNOH to find out what had happened.

No one could believe it, but after lots of tests I was informed;

Mik Scarlet“Yes Michael, it appears that you have regained a significant amount of sensory and motor function. I can only imagine that your nerves were not severed when you were 15 but were trapped in scar tissue. This last surgery has freed them.”

It also became plain that there might be a chance of trying to walk again. But the 25 happy years in a wheelchair had left its mark. My right hip had worn away and my bone density in my both my femurs were so low they might not carry my weight.

“We can replace your hip, and then replace your knees and ankles if you need it,” my surgeon told me.

And so that’s my dilemma. While I seemed to have been cured by mistake, can I truly say that I miss walking so much I am prepared to undergo years of operations and physiotherapy or do I say enough is enough and carry on enjoying my life as a wheelchair user?

Mik Scarlet and wife Diane

Love Is…

By Lifestyle, My story, The Love Lounge No Comments

Believe it or not, I am a huge romantic. I know my public image is not exactly that of someone who calls their beloved “Poogle Bear” (it’s true I promise), or has a collection of so-called “girls” romantic comedy films. Most people would imagine I’d be more likely to gob in someone’s eye than send them a bunch of red roses on Valentine’s Day.

Eroticis synth pop band photoWell I am a big softy and proud of it. Love and romance is what makes life worth living and nothing is worth having unless you have someone to share it all with. I am very lucky I have found someone who I truly want to spend the rest of my life with. Better than that, she wants to share her life with me! From the moment I first saw her, 13 years ago, standing at the bar in The Electric Ballroom, Camden, I knew she was the one. It took me another 6 years for her see through my pathetic attempts at trying to chat her up while being cool, but finally I made my intentions plain enough for her to understand. Here we are, all those years later, happy as piglets in piglet clover.

It’s funny really, because I never thought I would find love. I had just started trying to get girls to notice me when my spine collapsed at the age of 15. Back then shy teenagers like me were blessed by the God of Fashion with the Futurist movement. Pop stars like Gary Numan meant that we didn’t have to be witty or chatty when in the company of girls. All we had to do was wear eyeliner, dress in black, pout, and stare at the floor… looking all distant and strange. However, I wasn’t sure if girls would want to go out with a bloke with a disability, with all those perfect specimens walking about. I had finally plucked up the courage to ask a girl out, and she had said YES, when my T12/L1 vertebrae gave up the ghost.

After 9 months in hospital I started my life as a wheelie. It took me about 3 years to get back to full health, but even then I was sure that no woman would ever fall in love with me. You see not only had the spinal collapse left me with no motor function in my legs, it had affected my sexual function as well. Mr Wobbly stayed Mr Wobbly no matter what happened. So you can see why I was sure I had a life of bachelorhood before me. OK I was lucky, I still had full sensation, but I didn’t know how lucky that was until later on in my life. I was also lucky that I fell in with a crowd of extreme feminists that believed penetration was an act of oppression and who thought I was their dream man. I won’t go into my sordid history, but needless to say that over the next 20 odd years I turned into the sexually confident, leather clad, cyberpunk you know today.

Mik Scarlet and wife DianeThe sad thing is that I still come across (oo-er, missus) people that are shocked that I have a girlfriend. Before I started presenting TV going out was almost unbearable. I lost count of the number of times that blokes (and I use the word in it’s derogatory sense) would come up to my girlfriend and inform her that “she should try a real man”. They couldn’t understand why anyone able bodied would go out with me. Once I started doing TV this attitude changed, but more because they thought my girlfriend must be after my money than my body. I started going to fetish clubs because they were the only place were I could go with someone and be left alone. Those rubber clad perverts understood that whatever I could or couldn’t do, I was still a sexual creature.

A perfect example of how society views the subject of disability and sexuality is how the press destroyed my career. Back in 1991 The News of the World ran a two-page feature on me, predicting big things in my future, under the headline of “Wheely Sexy”. I even helped them compile a manual on coming to terms with a disability. However, just 5 years later the Daily Mail ran a story with the question “Is This The Right Man To Front Children’s TV?” all about the fact I wore leather and studs, and sang in a band who had sexy girl dancers on stage. They implied there was something funny about me being a kids TV presenter. All this came about because when I went on the record about how my disability affected my sexuality. I commented that the only people who accepted me as a sexual animal had a wardrobe filled with rubber- an observation about ‘acceptance’ that a lot of disabled people will be able to relate to. “Wheely Sexy” = good/ overtly sexy = bad. Thus ended my kids TV career. No parents would let their children appear on a show with me. Even though I had been presenting children’s TV for over 7 years and had been celebrated for my work (I won an Emmy in 1992 with my show Beat That), the idea of me being sexual was too much.

It’s this sexual double standard that we all have to deal with, and fight against. It doesn’t matter what our bodies can or can’t do, we are all capable of love. Isn’t it about time that our capacity to love is acknowledged, accepted, even celebrated?

All I know is my darling Diane and myself are going away for the Valentine’s weekend and if you are in the room next door, sorry for the noise.

Zoë’s story – Changing Tracks: Life’s unexpected twists & turns

By Lifestyle, My story No Comments

Woah! What’s that big thing coming towards me? Oh, it’s that Big Fate Train we sometimes have to face that can knock us right off the track we were seemingly happy on, setting us rather haphazardly on to another bumpier track, needing a lot of work on it to make the ride a bit smoother. I found myself facing this train when I was 18 years old. I was a fit, sporty, apparently healthy girl on the verge of becoming truly independent and going to University to study a Sports degree. Then I was knocked down by a complete collapse in my health and I had to cope not only with the physical changes to my body but also the mental ‘stuff’ of having to re-evaluate what my life was about after such a radical change of path.

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