Getting Sexy

It never rains but it pours, and this month is nothing different. But I must never complain about being busy eh?

Today two videos what I wrote and presented went live online, and I must say I am rather proud of them. They are part of a special feature run by the Wellcome Trust’s online science magazine Mosaic on the subject of disability and sexuality, written by journalist Katherine Quarmby. I was interviewed by Katherine and this led me to meet the Mosaic team, which in turn led to recording the videos.

The first explodes the top ten myths around sex and disability. I really feel it is vital that society re-examines the way it thinks about disabled people and sex, if for no other reason than anyone can become disabled… but they don’t suddenly change how they feel about sex. It’s a normal part of life and pretty much everyone can enjoy a sex life, disabled or not. Society needs to move away from this freaky image of disability and sex. And I for one am doing something about that. So this what lies behind the first of the videos…

The second video came out of discussions during the filming of the first. I was explaining about a technique I helped develop that allows disabled people with loss of sensation or function in the sex organs to regain the ability to orgasm. The crew was intrigued and so we shot a quick clip explaining how to allow yourself to create orgasmic zones anywhere on your body…. enjoy!

I hope you agree that as well as being informative they are loads of fun. I would like to thanks Barry J Gibb and Chrissie Giles at Mosaic and Katherine Q for getting the ball rolling.

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Notes on Nothing – An Autobiographical Snapshot

I’ve just turned my laptop on after ages. In fact I think the last time I used it was when I was in hospital earlier this year, and while roaming the hard drive I found this. Written to wile away the hours of enforced bad rest, it’s just a snapshot of a train of thought writing about my life. Nothing about anything much, but I have just read it and thought it might be fun to put online. So, if you want to know a little more about my life here you go…

Me and my brother. I'm 14, Steve is 11

Me and my brother. I’m 14, Steve is 11

When you are faced with empty hours stretching in front of you for long periods of time you have to find something to fill them. As a teenager I got up to mischief and did all manner of naughty things that adults called anti-social behaviour, including our group’s favourite game “Milk Bottle Wars”. This entailed riding our bikes towards each other throwing milk bottles stolen off door steps like missiles at the oncoming rider in a bizarre twist on jousting. But mostly we all filled our time with hanging about. Over the park, in the cul de sac that one of the gang lived in, up in the woods at the end of our road, or anywhere really that we could hang out without too much adult intervention. Not doing anything much. We didn’t even drink or smoke. We just did nothing in a large group. I am sure that all adults nearby found us a mixture of disgusting and scary, as people my age now do about groups of youngsters doing the very same today. Of course they are now all high on skunk and drunk of cheap booze, but that’s the modern era for you eh? Although I will admit we did make loads of noise and acted like we were drunk or high or stupid or desperately trying to impress any girls who were with us (you decide which was true….)

Only a few years later I had discovered music, so no more shenanigans for me. Every spare minute was taken up with learning to play keyboards and the basics of operating the very simple music computers of the time. It was the early 1980s and electronic music was all the rage. I was a addict from the moment I first heard The Human League’s Being Boiled on John Peel’s Radio 1 show. I, like so many others, listened on a pocket radio through a single ear piece huddled in my bed as the show went out late at night so past my bed time. The sound of the synthesizer did something to my teenage brain and it was love at first saw tooth warble. Shortly after this I was taken on holiday to my uncle’s farm in Somerset. I say holiday but it was more like enforced labour, as my bother and I seemed to get given “jobs” rather than allowed to have fun. Not that there is much fun to be had for two townies stuck in the middle of nowhere, surrounded by cows and fields. The local kids would have nothing to do with us, so it was “jobs” or die of boredom. On this holiday I was about to hit my fourteenth birthday and so was entering that surly stage. As the level of teenage grumpiness grew day by day, my parents decided it might be wise to take me into a town to let me find something to do that didn’t involve cows. So after a drive through the winding narrow roads that scare the hell out of anyone child from anywhere with real roads and not cart tracks that have been covered in tarmac, we arrived in Taunton. This is the county town of Somerset, with all the trappings of normality. Shops. I didn’t have much money, neither did my parents really, but I still jumped from the car and went roaming with only a perfunctory “bye” to my family to go shopping.

At this time music and fashion was the centre of my universe, yet a had not really landed on My music and My style. Hence I roamed the streets of this unknown town dressed like a strange cross between a punk, and a mod with rather short cropped hair. I had green army trousers with black monkey boots, a printed t-shirt with Eddie Kidd blazoned across it and a brown corduroy suit jacket that had been covered in safety pins and badges. While you might not be able to picture it you must know that stage all teenagers go through, were they think they look great but the rest of the world know the truth, well that was me big time. I knew I had an hour of alone time before I had to meet with my family for family time, so wondered the strange streets with a purpose, although I had no idea what that was. Then suddenly I heard the most amazing sound, coming from a back street record store, that had it’s door open. The had a bow fronted bay window with leaded windows and looked like it should be selling traditional Somerset fair, not pop music. Yet from this shop taken out of a Dickens novel came a sound straight out of the future. I later learned it was Tubeway Army and their hit single Are Friends Electric, but at that moment all I knew was it was the sound of all the science fiction books I loved so much. That moment is one of my fondest memories, as it was the beginning of a life of music and what playing it led me to do. It also signposted the death knell of my search for a teenage fashion that fitted with me, and the start of a relationship with hair dye, eyeliner and dressing up like some kind of sci-fi film extra. To say this was a turning point would be an understatement. Not that I knew it at the time. I didn’t even go in to the shop. Didn’t have enough money to buy anything to be honest, even though singles were only a very cheap. That’ll teach me to buy sweets before hand eh? Teenagers; think they are grown up but still act like kids! All I knew was I had to go and meet my parents and that as soon as I got back to my home town of Luton I had to seek out that amazing sound. The rest of the holiday dragged like they always did. I was so bored I managed to read the entirety of Frank Herbert’s Dune trilogy, which is a hell of tone. Days of drudgery surrounded by far too much nature for a townie teenager, and nights of darkness that was more like a thick sheet over your face than it was the lack of light. Thankfully soon we were driving back, a journey that took forever as my Step Father insisted we use back streets to drive all the way from Langport in the Somerset levels to the streets of Luton, just outside London. (As an adult I find myself questioning whether this was driven by my step father not having a driving license rather than a joy of seeing lovely scenery, but I can’t be sure. Not the kind of question you ask really. “Dad, do you have a license?” Slap would be the reply)

Luton is a strange town. Until I hit my teenage years I loved it. Where we lived, in Stopsley on the outskirts of the town, there was countryside nearby, a huge park and good schools. We also had two sweet shops and a news agents that sold all the comics you could read, and all of my friends were in walking distance. What’s not to love. Hours of fun playing in the local fields, or the nearby woods or the adventure play ground just down the road from my home. It saw safe, with loads to do and a huge shopping centre only a bus ride away. Nirvana for kids. However, as your tastes change as you blossom from childhood into that in between stage of awkward teenager, the shone slowly falls away. It’s still great fun, riding bikes (throwing milk bottle on occasion), and mucking about with weekly trips to the youth club to flirt badly with girls who are only interested in the older boys fill your nights and weekends. You just know that there is something missing from what you imagine you will want as an adult. Or at least I did. I look back and realise that most of my friends did not feel this way. Their world would always revolve around Luton and the surrounding area. This was mainly due to Vauxhall Motors having a major car factory in the town, which meant a never ending requirement for labour and thus secure employment. It was especially important as I hit my mid teens as this was the era of Margaret Thatcher, and the huge growth in unemployment that went with her government’s reign. Being based somewhere that was not so heavily hit as many other industrial towns did create a reason to stay for many people. Of all of the students of my year at high school I only know of a handful who left Luton to live in adulthood.

Move over Tik & Tok - here's Mik

Move over Tik & Tok – here’s Mik

I was one of those. I finally left at the age of 27, but since the age of 18 I had been travelling to London regularly. It started with shopping trips to buy clothes and new records and all those other things a fashion conscious youth can’t find in a small town. Soon shopping was joined by clubbing. London’s nightlife and gig scene called to me, originally on a weekly basis but growing to a point where I calculated I would spend less on rent than I was on petrol for all the trips to and from the big smoke. Why spend more to live in Luton? Well I couldn’t find an answer either so I started putting out feelers to find an place in London, and thanks to a contact I soon ended up in a one bed flat in Hackney. Life both began and ended then. The end was the death of almost all things Luton. I tried to stay in touch with my old friends but whenever I contacted them to ask them to come down and enjoy the thrills of London they acted as if I was showing off. Rather than come down and stay over, visiting the night life and shops we used to all trip to via the train or M1, they decided that I had got too big for my boots and dropped me. Which left me alone in this huge city, so I went out and made new mates. I was lucky at this time as I was a well known TV presenter at the time, and this always helps find mates… of both types (oo-er). Most of them were shallow and after something, but I knew that and placed them in categories. C List mates were those who I called on if I had no one to go out with, required company and was OK with being used in some way. B List were those who I liked but knew I was there more for what I could bring than who I am and then A List where those I hoped would become my new mates. Looking back on this area it was a rather sad period but it didn’t feel so at the time. I had some serious fun, and partied hearty as I had dreamed being famous would bring. Oh yes, I took advantage of all the trappings of minor fame, although I might not have had as much sex as I could have. Far too much of a nice boy. Foolish maybe, but I am a little proud of not being a typical male and just shagging around because I could. Not sure my new mates saw it this way, but for them it meant more available women for them. For me it meant a growing group of female friends that found my personality and attitude towards them refreshing and new. So we all won. I guess. Luckily it led me to finally form the relationship that was to be the most important in my life, that with my wife Diane.

I first met Diane at the Electric Ballroom many years earlier. We think it was in 1988 or 89. We both are crap with dates so it could be later or earlier but hey, as long as both aren’t sure its OK. That week I found myself single after a row with a long time girlfriend. So I went out a free man for the first time in a long time. ON that night, just after I entered the club, I looked towards the bar and there stood a girl who stopped time. Honestly it was like in a film. Time slowed and people parted to create a clear path to this vision who was lit from above by the lights of the bar. I whizzed over, grabbed the bar and jumped onto my feet to say Hi. I spent the night chatting with this stunning, exciting creature and felt something I had never felt before. Sadly she was there with her ex-boyfriend and felt she had to go home with him out of duty. I asked if she would be there next week. Yes she said, but the next week she was not. So I thought that was a chance missed. But her memory burned brightly. But for now, I got on with life.

However I kept bumping into her. I found that she had gone back to her ex, but did not seem happy. She was amazing and although I also returned to my unhappy relationship, she was always on my mind. When I moved to London I bumped into her even more, and started seeking her out. I found that I had a mate that worked in the same place as her boyfriend, so I could find out where they’d be. I even booked her boyfriend to DJ at a club I ran, because it meant I knew where he would be for a couple of hours… leaving her free to chat to. Now I say all this and it sounds rather stalky, but I did not hit on her. I wanted her to be a mate, if I couldn’t be with her I could know her. So I gave her advice on her love life, and just put up with the fact she would not be mine. I formed another relationship with a rather awful woman, but I won’t bore you with all the gory details, but as this nightmare unfolded it became clear that Diane was equally unhappy with her love life. I now formed a rock band and asked Diane to join as a dancer. As soon as I heard her sing, she was then promoted to lead singer and this led us to spend lots of time together working on songs. Tee hee.

Mik and Diane (stage name Angel) giving it large

Mik and Diane (stage name Angel) giving it large

We tried to fight the chemistry the grew between us but it was bound to happen. We kissed a few times on stage during gigs, under the guise of the show. Then one night we planned a night together with dinner. I cooked a Chinese and waited for DI to arrive. She was late but when she walked through the door she was a vision. In the shortest dress I had ever seen. We ate, and I fought the urge to take her in my arms. Then suddenly she jumped on me and we kissed. From there it was a short skip to the bedroom… and I shall say no more. Just it was amazing and I knew she was the one. I was hooked. Not only was she my mental fit, but we clicked in the sack too. But we both had partners. Well I did for a few more days, and then she was dumped. Diane took a while longer but she lived with him. Within a month we were finally together. Yeah! The rest is history… a very happy history.

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Memories of Representation!

On Friday August 22nd I took part in the monthly BBC Ouch Podcast, with presenters Simon Minty and Shannon Murray. It was great to be back at the BBC, to be in a studio covering stories about disability and to be working with such great people. However the whole experience did leave me a little saddened.

Mik outside New Broadcasting House

Outside the Beeb

I was filled with the memories of a time when disabled people were featured on radio and TV so much more often. It might sound crazy to any body who is young reading this, but when I started in the media over 25 years ago disabled people appeared regularly on both TV and radio. All of the TV channels had a regular show dedicated to disability, fronted and made by disabled people and in radio we not only had a dedicated show but disabled people worked in the mainstream all over the air waves. I myself started out in mainstream TV, working on prime time on ITV, before going over to Channel 4’s “yoof” output. I was also picked up the the BBC’s disability show One In Four which was reaching the end of a highly successful run, featuring a team of disabled presenters that were minor household names. When the show ended, the BBC created the Disability Programs Unit, which ensured that all disability based TV was made by entirely disabled production staff as well as being fronted by disabled onscreen talent. They made the series From The Edge, which ran for 10 years, and Over The Edge as well as other award winning shows such as Disabled Century. All made by a team of talented disabled people. The other channels also had specialist disability programs too, but the BBC was most committed to ensuring a visible disabled presence within their output.

In The Studio

In The Studio

What is most important about having shows about disabled people being made by disabled people was the representation was fair and truthful. We made sure no one was exploited and that we always covered a story in such a way to empower those involved. Sadly the landscape of the industry changed as the century came to a close and by the year 2000 all disability TV had been canceled. At the BBC all of the onscreen talent were told we would be “integrated” into the mainstream, but what actually happened was we pretty much all ended up on the dole. After that disabled people disappeared from our screens, and so we ended where we are today. With the exception of The Last Leg and ParaSport I would say disabled people are either invisible or the object of “freak TV”. We now hear that the industry wants to increase the numbers of disabled talent on our screens, but will these moves get anywhere near to the level we once had? I doubt it. Even if they slowly do, will this talent have the ability to control what they are expected to do and be involved in shaping the output as not to create exploitative or unrepresentative programs? I hope so, but I would say that if the programming that has been produced in the last ten years is anything to go by my hope may be misplaced.

Recording in the Bag!

Recording in the Bag!

While it is great that disabled people still have somewhere to go to find out about news that impacts on them, thanks to the podcasts of the BBC, Disability Now and Disability Horizons, it is a real shame that these are the only resources. Especially in a media that has now proliferated and grown in a way we could never have imagined way back when. If there had been a real integration of both the disabled talent and the stories that are of interest to the disabled community then I doubt we would be needing yet another big push to increase disabled people in the media. Instead of creating a representative media back in the late 1990s, we were written out of the industry, with only few people like those at BBC Ouch and the ubiquitous BBC Radio 4 presenter Peter White remaining. So we end up where we are today, with the industry acting like they are doing great things by trying to increase the numbers of disabled people in the media, while not admitting that they are only trying to correct mistakes made decades ago. Disabled people can be great on our screens and working behind the action, and anyone of my age will know this to be true. I mean, without blowing my own trumpet, I won an Emmy in 1992 and was voted Children’s TV Presenter of the Year in the same year. Not disabled presenter, just presenter! To think that back then there were so many disabled faces on our screens your needed both hands to count them! We must get back to those days and keep it that way.

Will Disabled Talent Always Be On The Outside?

Will Disabled Talent Always Be On The Outside?

Right, rant over. One last thing…. of you are a media exec looking for disabled talent…. gizza a job! (Shameful I know…. but if you don’t ask, you don’t get!)

The Podcast is available from the BBC Ouch website now!

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Belonging – A Night at Circus Fest 2014

Belonging Cast

Belonging Cast

As I queued to enter the temporary big top in the car park of the Roundhouse in Camden for the performance of Belonging, the production of Graeae Theatre‘s collaboration with Brazilian circus troupe Circo Crescer e Viver, I over heard a fellow audience member as she said “It’s going to be great to see a show that gives them [disabled people] a chance to prove what they can do”. As a professional actor of 25 years, since being the first disabled actor to appear in a UK soap back in 1991, and the chair of the actor’s union Equity’s Deaf and Disabled Members Committee I know all too well just how high the standard of talent is within the disabled acting community. On top of that I have witnessed how many disabled actors have worked hard to add circus skills to their CV ever since the stunning acrobatics of the 2012 Paralympic Opening Ceremonies, so I knew I was about to witness so much more than a chance for disabled actors to prove themselves. Oh yes, I was in for a theatrical treat from a cast made of entirely of disabled talent.

Sarah Bentes & Milton Lopes

Sarah Bentes & Milton Lopes

Belonging is the story of a group of people who visit a house that is about to be demolished and we are allowed to follow them as they explore their memories of the time they spent in this soon to disappear home. As the production proceeds we see snapshots of the varied character’s personal recollections, performed using drama, song, dance and aerial acrobatics. Each tableau captures a story that resonates within the audience as the show travels from childhood memories of fun and play to the finding and loosing of love. All the elements of humanity are here, filtered through Graeae’s veil of artistry and creativity. A challenging element of the show is the use of three languages, English, Spanish and Sign Language. This emphasizes both the sense of belonging when the script can be understood, and exclusion during the segments when you have to guess at what is being said. It is a wonderfully creative way of exploring the experience of disability in the 21st Century, while adding to the overall excitement of the piece.

Viviane Macedo & Milton Lopes

Viviane Macedo & Milton Lopes

Personal highlights were the two beautiful dance sequences, that are sensual, graceful and a joy to behold, and the high octane fight sequence, that mixes action with humour in an frenzy of aerial activity. Another beautiful section was the opening song by Sara Bentes, that took my breath away. I did feel that by being fully aware of the talent and skills of disabled people I lost an element of the wonder of the performance which I saw reflected in the faces of the mostly non-disabled audience. I suppose it’s one of the joys of expecting the very best from my fellow disabled performers. However Belonging more than lived up to those expectations.

Sarah Bentes

Sarah Bentes

A truly breath taking collaboration between Graeae and Circo Cer e Viver that gives the audience a joyous, challenging and ethereal experience Belonging is so much more than a chance for the disabled cast to prove what they can do. It cleverly uses that disability as a feature of the show, using it to get laughs, gasps and sighs of emotion while entertaining and enthralling from the moment the show starts of the final curtain call. While I sometimes love my job as a reviewer, this being one of those nights, throughout the show I found myself wishing I was a few years younger so I might have played a part in this wonderful production. It was gratifying to not only see new young disabled talent proving their metal but to realize that this talent is being recognized on a global stage. Not that this is a reason to see this production. No that’s because it is a smashing hour of entertainment, suitable for all the family that leaves you thoughtful, with a happy heart and a smiling face.

Marcos Silva & Stephen Bunce

Marcos Silva & Stephen Bunce

All Images © Patrick Baldwin 2014 – Cleared for use in this article via Graeae Threatre

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Sick Boy’s Thought’s from a Sick Bed

Sick Boy Collage

Sick Boy Collage

Well it’s been a crap week. Last Thursday night I went to bed with a pain in my left hip. By the morning an injury I incurred in 2012, during the rehearsals for the Paralympic Games, had flared up. In fact it later transpired it was infected and by the evening my wife had to battle to get an locum GP sent out. The infection was spreading at a dramatic rate and we were both scared. When the GP arrived, he said we were right to panic and if we had left it until the morning, as we had been advised by the 111 operator, things might have been very serious. Oh dear. So I have spent the last week stuck in bed, pumped full of strong antibiotics, unable to do anything much. Luckily I write as part of my job and you can do that from a sick bed, so we aren’t heading towards poverty just yet. What has amazed me during this whole process of fighting to get my injury treated is how differently I am treated due to my being disabled.

It started with no one believing I could actually feel how much the injury hurts. I have no idea why I would lie, but doctor after doctor found it hard to believe that someone who uses a wheelchair can feel anything below their waist. The incredulity I faced about having sensation in my lower body is nothing compared to the reaction I got when I said I worked. This seemed to be unthinkable, even to my GP who should know my personal situation. I have had to start explaining the hourly, weekly and daily rates I charge to make my medical team understand that my job is not a hobby and that they do really need to to get me back to being able to work full time as quickly as possible. Crazy isn’t it that at a time when the government is pushing the idea of disabled people working more, those of us who do are treated by employable by society?

Another big issue is that I have to keep letting people down. I have had to cancel job after job, booking after booking and so many appointments I have lost count. Sure it’s all costing me money, but it is damaging my reputation too. I try my hardest to be a reliable professional whose word is his bond. If I say I’ll do something, I do it. I just can’t live up to that right now. Not only will my health deteriorate if I try, but if I did venture out of the house I doubt I’d make it through to my car, let alone through a day of work. It really is that painful. So if any of the people I have let down, and those who I may still have to let down read this… I am really sorry.

This is something that my doctors just don’t understand. It’s not only the money, my reputation is vital as I work in a cut throat industry. If I don’t do something someone else will. Once a chance has passed, it gone for good. It’s not like having a real job, with it’s sick leave and sick pay. As a freelancer, every job is vital, your reputation is king and there will always be another person who can do your job. Yet all I hear is just rest, stay in bed. As I have no real idea of the time it is going to take to get better, I have no idea if I should take bookings or not.

OK, this is all very woe is me, and having just read it back it is VERY woe is me but I just wanted to put it out there. Not sure what it is, or why I wanted to write this, but then I have been cooped up inside for over a week. A week when the weather finally broke, the sun shone and I had a full diary. All I do know is that to anyone I have let down, or who I will let down as I get better please accept my apologies. If I can I will be there, if not I owe you one. If you are a doctor, nurse or other medical professional please remember that disabled people are all different. Some can feel, some can’t, and some work, some don’t but whatever their personal truth is they need to be treated in exactly the same way they would be if they were not disabled.

OK, that’s enough misery. Normal service will be resumed soon. Bloody better be soon or I will pop with frustration and boredom. ARGH!

On a positive note, I’ve lost loads of weight! Always a silver lining for an ageing Goth!

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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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Holiday Travel Blues

I am writing this during a break in packing for the first holiday my wife and I have booked in over three years, as I need to take my mind of the increasing panic I am feeling. Writing it down makes it more real and not seem so crazy. You see one of the driving reasons why it has been so long since we last traveled to foreign climes is my dislike of traveling abroad. But this is not a phobia, not but is instead based in the litany of cock ups, disasters, mistakes and down right discrimination I have faced during the 25 years I have been trying to see the world. In fact one of the things that always amazes me when I read any foreign travel story written by a disabled traveler is that they hardly ever experience any major problems. Every time I have gone abroad something has happen worthy of an entire book, or a comic farce at the least.

It began with my first trip away to Ibiza in 1988, at the tender age of 23, with my great mate Trevor Beasley. I should have known the omens were bad when I was dropped by the ground staff who carried me onto the plane. Not only dropped, but dropped onto my spine – the root of my impairment. So to say it hurt was a considerable understatement! That was soon forgotten as we did the decent thing for two young guys on a lads holiday and got very drunk on the flight. We arrived at the hotel only to find that the room that we had been promised would be OK for my wheelchair had a minor issue… I couldn’t get through the bathroom door. The solution? We removed the door. So this meant that Trev and me got better acquainted the we would have preferred, but the holiday could proceed. After three days of sun, sea and failing to find sex, on the way back to the hotel after another boozy night, there was a terrible crunching sound and my chair broke in half. IN HALF! We fought our way back to and I then spent four days stuck in our room, having food brought up to me by the mate of which ever girl Trev was trying to chat up. Finally Trev found a garage run by a guy from Scotland, which allowed Trev to describe what was wrong with the chair in English, and he bravely carried the broken scrap metal to a nearby town in the boiling mid day sun to be repaired. (yes he never tires of telling me how tough it was, even to this day) It returned welded solid, and so was possibly the first rigid frame chair ever. All of this had taken the shine off the break, so we decided to stick to attending a nearby punk bar for the rest of the holiday in case of any more “incidents”. When it came time to leave, I sat on the place filled with feeling of happiness. I was going home and so nothing else could happen. Until I saw the baggage handlers jumping on my welded open chair in a futile attempt to close it. On arrival home I found both wheels were buckled and had to spend ages stuck on house arrest waiting for a replacement chair to come.

Mik Scarlet & Trevor Beesley Ibiza

80’s Sunshine Boys

What is most amazing is that this is not a one off. Everything that happened on that holiday has been repeated in some form or other on almost every other time I traveled abroad. Not only for a holiday, but for work too. I once went to New York to film a travel program for the BBC. Not only was I a wheelchair user, but so was the director. When we landed at JFK all hell broke loose. The ground staff refused to help either of us off the plane. While I eventually decided to crawl the length of the plane and down the steps to the ground, my director could not as she used a powerchair and just could not crawl. So now we have a plane that needs to be turned around with a cripple stuck on it. After an age, getting near to an hour, the panic became fever pitch and the poor director was manhandled off the plane by cabin staff, mixed film crew and anyone else nearby. Even after we got off, this major world city was not all wheelchair heaven. The freakiest thing was the wheelchair accessible cab we hired to drive us around for the period we were filming there. The driver smoked super strength weed all day and night, freaked out at regular occasions and drove off without us twice. And of course my chair broke and I pulled a muscle when I got thrown out of my chair by a massive pothole in a road I was crossing (note New York has great pavements but the roads are appalling!). I won’t bore you with my long list of other reasons why it was a disaster because I disliked the city so much I fear it might have coloured my view.

Mik Scarlet on the Hudson river NYC

Mik Does The Big Apple

But my most recent trip away really put my off flying, almost for good. After a fairly successful trip to Cyprus, with only a minor wheelchair repair incident, my wife and I arrived at the airport with a feeling that maybe our travel jinx had been broken. As well as ourselves there was a other nice couple waiting to be loaded onto the flight, with the wife being the wheelchair user in this love match. We queued to get on the plane, but instead of being let on first as usual, we were made to wait until the very end. I got onto the plane only to see that the seats at the very front, usually reserved for disabled people, were filled with people who had paid for early boarding. When I asked if anyone would move, they all firmly said no. Luckily someone on row three said they would, and I fought my way to this seat. I should say that I now no longer allow anyone to carry or assist me when getting on or off planes, after way too many disasters, so I manhandled myself to this seat. The other wheelchair user was not so lucky. She needed a much greater level of assistance, and it was obvious to anyone who cared to look that she really needed to be sat at the front of the plane. But still none of the people who had paid six whole pounds for early boarding would move, especially the only person in the six seats who was traveling alone. He was quite insistent that he had paid for the seat so he was staying in the seat. Instead this poor woman had to be carried down the aisle of the plane way back to seats sixteen or seventeen rows back. By the time she arrived at her seat, her blouse was over her head, her skirt was round her ankles and she was screaming in discomfort. On arrival home we were met by the UK ground crew who were stunned to find the seats we had been put it, if for no other reason that it made their jobs harder. We swopped numbers with the couple as we wanted them to claim against the airline but heard no more.

As I said earlier if I tried to list everything that has ever happen when traveling abroad this would be one of the longest articles in history, there have been so many. A humdinger was when we arrived at a hotel and got our keys to our room on the forth floor, but when we asked “where’s the lift” were met with the answer “What lift?”, or the time we tried a package holiday from a supposedly accessible holiday company only to arrive at the hotel to be told they don’t have any accessible rooms. We ended up being moved to another hotel to a room that meant I couldn’t wash for week as there was no accessible bath or shower. The list is endless.

But don’t let this put you off traveling if you are disabled. What you need to do is plan. Plan for every eventuality. This time away I am taking a full puncture repair kit, plus we know the Spanish for bike pump, a mini tool kit, every type of pills and potion I might ever need and a full knowledge of both local and international equality and airline law. To me foreign travel is not super fun, but more a test of endurance. But us disabled people do like to prove we can do something, and the harder it appears to be the more some of us like to it. All I will say is next time you read one of those “Here’s a list of amazing fun things I did when I visited…” articles they may have left out some the less fun events out of the story as not to terrify you. I mean who wants to read a travel article that just goes “ARGH, it was awful!”?

Anyway, back to the packing. Do they allow welding gear on flights nowadays?

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Welcome to the World of Tomorrow – one of your making?

Mik & Stairs

Fly my Beauty… or go round the back.

Recently I have written several articles for the online publication The Huffington Post and the disability magazine PosAbility exploring many current issues of great importance to disabled people like me. Much of the press has also covered the very same issues, gaining views from from all sides of the political debate. In the last week disabled people came from all over the country to make their voices heard as an attempt to get a wider public and the government to listen to their fears over how many of the changes in benefits and social care underway at the minute may impact on their lives, and some of the press has carried pieces explaining these worries too. Whenever one of these pieces are placed online they find themselves accompanied by a large number of comments, and as I sat reading a selection of these last night I felt driven to write this article. I am hoping not to give you any answers but to pose a thought experiment based on my own personal experience of becoming a wheelchair user at the age of 15. I will not refer to my age during the piece, but I will change some elements of the story as to ensure you can imagine it applying to you.

Are you sitting comfortably? Good, then I’ll begin…

Imagine, one morning you awake ready for the day and as you go to get out of bed you find that instead of taking your weight your legs fold underneath you. Try as hard as you might, you just can’t seem to keep yourself upright, but you have a very important event happening that day and so you order a cab to take you to where you have to be. On arrival you collapse in the door of the taxi, a crowd gathers around you and an ambulance is called, where upon you are rushed to hospital. After a week of tests, where no one is prepared to say exactly what is wrong, you are moved to a major London hospital for further examination. You are soon told that sadly it appears to be cancer, which is made even more worrying as you have also discovered you are in a terminal ward. Fortunately the next day you are informed that your prognosis was incorrect and instead of a serious spinal tumour you are in fact suffering from a major spinal collapse. So while you are not dying you are facing some major surgery.

Your first operation takes 13 hours and leaves you unable to move or sit up. You are in that state for two weeks, before you are moved to yet another hospital for reconstructive spinal surgery. During this time almost everyone else in the ward dies, some dying in ways that would not be out of place in a gory horror film. After you arrive at the new hospital no time is wasted and you are soon in surgery for a 12 hour operation. You stay in this hospital for several months, during which time you fight two serious infections, one case of post operative double Pneumonia and one allergy to the material used to close your wound. But you pull through and six months after the day you collapsed you find yourself back home. While you are overjoyed at getting home, it is not completely the joyous event you might have hoped. For now all the people in your life have changed in their relationship to you. Once you saw them as equal, but now they are your carers. You find your have lost your job, and in fact are still too ill to even consider working. The future that you had planned and worked for now seems to have turned to dust. You find yourself lost and falling into a dark place, unsure of what tomorrow holds for you.

This is where my thought experimental starts. What kind of society would you want to live in if you found yourself in this position of being newly disabled?

Let’s imagine World A, where even before you leave hospital a team of experts begin working with you to create a care package that puts your needs and wants at it’s center. This means that your family and loved ones are as involved in your care as you, and they, want to be and you know that independence will be at the center of your life from now on, almost as much as it was before your impairment struck. Your home is adapted, with financial assistance provided if you need it, and if your home cannot be made accessible to you a specially designed wheelchair accessible home can be found, either to buy or to rent. You are also assisted to claim all the relevant benefits that you and your family are entitled to, which ensures you do not have to worry about your finances even thought you may see a dip in your income. Your applications for financial assistance are supported by the medical professionals who have first hand knowledge of your full medical history and your prognosis, which as well as ensuring your assessment is correct prevents fraudulent claims. In fact on your arrival home you find that you are not worried about anything other than getting better and learning how to live with your new abilities. You find that you have several well publicized role models of successful disabled people to inspire you, successful in many areas of life from sport and the arts to business and politics. When you leave the house you are met on occasion with sympathy and even pity but mostly you find you are treated as an equal. You live under a legal system that prosecutes any act of discrimination you and your family might face due to your disability as an act against the state, which means the police will be involved and you do not carry the burden of the expense of any case. While you are only at the start of what may prove to be a long road to recovery, you are secure in the knowledge that you will be in control of where that road takes you.

Now, let’s picture World B. Before you can go home you face a delay as it proves difficult to organize the adaptations to your home, due to the full schedules of the experts required to assess your home and your local council having spent their allotted annual funding for similar works. You are left in the position of having to either fund all the works yourself or to remain in hospital until your needs are met. If you do not have the funds to cover the required changes, when the council is able to help they are unable to fund a full refit of your home and can only carry out works that lead your home to be “suitable for your needs” but not fully adapted. This means that once you are home you may need extra assistance to do things like bathing, cooking and leaving/entering the building. You can try to move to a specially adapted home, but there is a lack of such homes. This is partly due to very few being built and partly as they are not always sold or allocated to disabled people like yourself, thus many of them have had all the adaptations removed. It is difficult to rent on the private market due to there being almost no accessible provision. So even if you want to leave, you may have to stay in your current home for some time. Your finances worry you because you are only able to claim for many of your benefits once you are home as you are required to attend assessments, where you are assessed by someone who has no knowledge of your medical situation or prognosis. While you are eventually successful in most of your claims, you still are unsure of the future as you require annual assessments for as long as your need financial assistance, in a drive to prevent fraud in the system. Your family are left to burden most of your day to day care, as you are only entitled to no more than two daily visits from a nurse or carer, who is charged with assisting you in the morning and evening, and this is driven by a lack of funding for social care. You are unsure of what time they will be visiting you but understand as they are very busy. It does however mean that you find it very difficult to plan your day, and this means you are also unable to see how you may even return to work in the foreseeable future. If you have your own means you can pay for increased care provision, but this is very expensive. Legally any act of discrimination you and your family face is seen as an act against the person, and so the only way of prosecuting any case is to take out a private prosecution, financed either with your own money or via a “no win, no fee” agreement with a solicitor. You find that there are very few disabled role models, other than a small number of top level sports people, and occasional faces in the media, but you do find these an inspiration even though you are not able to take part in sport yourself at present as your health will not allow it. When you do leave you home you find you are met with a mixture of attitudes. Alongside some of pity and sympathy, you also confront regular aggression, mainly from people who believe that you are either getting special treatment, due to the system of support that is there for you, or because they feel that you are consuming without contributing to society. You also find society now strongly believes that it is a noble course of action for people in your situation to commit suicide, for by doing so you avoid a life of suffering, save you family from a life of caring for you and save society the cost of assisting you to live. All of this weighs on your mind and you are left unsure of what your future holds. But you are hopeful.

Now before you complain that it’s a weighted situation, I should remind you that neither of these are true at present, yet both are true also. You can pick and mix from both for a real world experience of becoming newly disabled, but that is not what I am asking. I want to know which world you think we should be working towards, World A or World B, and more importantly; why? I will admit that World A will cost our society more to achieve than World B, but nowhere near as much as many of you might imagine. That is part of my question I suppose, how much are you prepared to fund either world and what are the reasons for your choice?

I hope that this article is a vehicle for sensible debate on the issues of rights, responsibilities and the needs of disabled people at this time of flux. So come on, put your thoughts in the comment boxes below and help build an understanding of why so many of you deeply feel the way you do, as demonstrated by your comments on so many other disability based stories. I look forward to reading them, and to starting a dialogue on the subject that may hopefully lead to some of us finding some common ground.

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Cobbles – Can a Paving material be evil?

Now this blog’s title might be a little dramatic but as I am still recovering from an injury incurred while wheeling around on my arch nemesis cobblestones I hope you understand why I am so down on the outdated solution for the creation of a road/pavement surface. I think most people truly underestimate how much cobblestones impact in the lives of people with mobility issues, and how they are in fact a very subtle form of apartheid.

Lock Night Market

Only yesterday my wife and I wandered down into the heart of Camden Town with the intention of spending an evening at the Camden Lock Late Night event, but found that the only way to gain access to the area was via some very uneven cobblestones. Now I didn’t fancy making my injury any worse so instead we ended up going straight back home. Can you imagine how it feels to have to change your plans just because a pavement might cause you an injury? Do you have any experience that allows you to empathise with the emotions that run through the minds of people who feel excluded just because of the choice of material used to pave an area? Have you any idea how unimportant you feel when time and time again the concepts of heritage and conservation are held up as being more important than creating an inclusive society that allows you to experience all it has to offer like most of the other people in it?

Well trust me, after attending many local planning meetings and community engagement events I know all too well. So often I witness people arguing passionately about saving local heritage but when I raise the issue of ensuring that alongside this there must be an equal drive to make sure the place where I live is accessible to me and other disabled people I find that my arguments are met with anger and dismissal. So this is why I am going to explain the problems with cobbles in this blog. From now on I can just point planning officers, architects, town planners and local conservation committees to this and save me having to make the same impassioned argument over and over again.

Cobble stop

I think I should first explain what it feels like to wheel over cobblestones, whether you are a manual chair user or use a powerchair. The best description I have heard is that it feels like being kicked or toe punted repeatedly in your bum for as long as you are traveling over the cobbles. I know that after one particularly long wheel over some very uneven cobbles in Camden Town centre my left testicle swelled up and was very painful. Another time on a site visit with the late David Morris to assess Camden for a Paralympic Tourist information leaflet we had to bungy cord David into his powerchair to stop him falling out as he was being thrown around so much by the cobblestones. He decided to advise any wheelchair using visitors not to come to Camden, which is not something I would have expected the local council to be happy about, but even then nothing was done.

The key reason for the lack of movement around building a more accessible environment in Camden Town is the power of the heritage and conservation lobby. I have witnessed far too often the voice of history winning out over other lobbies, even ones like access that have a legal requirement. I currently work advising the owners of the Stables Market here in Camden on ways of making their site more accessible, but it is a difficult path as so many areas have had new cobblestones laid to mirror old ones, even down to the terrible unevenness of them. All of this was due to the advice and lobbying of the local conservation groups, but at no point did the council ask if there was anyone giving access advice. So annoyingly we are now playing catch up, but hopefully we will get there.

Stables Market

But it’s not just modern cobbles laid to continue the local feel or poorly maintained original cobblestones that cause issues. Oh no, I injured myself in an area that is held up as an example of good practise when trying to maintain heritage while ensuring access, the area around Tower Bridge. The issue is, as the wife of a TV director friend of mine says, there is no such thing as a good cobble. Even when they are laid well and maintained they are still very uncomfortable to travel over if you are on wheels, and so they surely are not fit for purpose?

Modern cobbles

To me that’s the most important issue here. No other material would be continually used that so poorly carried out it’s desired task. Whether we are talking original cobbles, stylised copies or modern granite setts none of them really fulfil their desired use in a manner that works for all of our society. It is always a choice of aesthetic over function and we really need to start to reconsider this. There has to be better solutions that can maintain a heritage feel while making travelling surfaces smooth and easy to use. Well of course there, but I am not arguing that we remove all cobbles everywhere and damn history.

I entirely understand the desire to maintain the historic feel of our towns and cities, but I do ask (no demand) that it is not done at the expense of function. If some members of a community cannot use an area due to conservation then not only have we conserved our building heritage but the social injustices from the past too. But there are ways of creating access beautiful historic environments. One answer is to create pathways over the cobbles that are flat and allow those who need a flatter surface easy access. I have seen them in Barcelona and they work very well. I hope that this solution may be put in place here in Camden, as not only does it ensure accessibility but also allows all of the cobbles to preserved. I also know that English Heritage support the creation of Yorkstone pathways through historic cobbled areas, although why this is hardly ever done I have no idea.

BCN path

In future I hope that we can find a way of ensuring our heritage is preserved for future generations and our society can become more accessible, but while we wait for that day it is vital that we remember it is now a legal requirement of any new build, environmental works and major refurbishments to ensure accessibility. The heritage lobby might be very vocal but they do not have the strength of the law behind the. All it will take is one very annoyed wheelchair user to take case to the EHRC and win, and suddenly all cobbles and the like will be deemed illegal. I don’t want that to happen, although I must admit I close to becoming that litigating cripple myself, so I feel it is time that all parties start talking with each other and find a way to work together for a common goal. As it currently stands all everyone does is fight their own corner and no really wins. Especially those of us who spend our lives living on wheels.

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disAbled Models – The Documentary goes live!

The campaigning group Models of Diversity have just released a video on the subject of getting more disabled people into the modelling industry. Featuring up and coming new faces like Jack Eyers and Shaholly Ayers as well as established disabled models like Kelly Knox, plus some ramblings from little old me, the film really proves that disabled people can be beautiful too. It highlights the issue of how invisible disabled people are both in the fashion and advertising worlds and why it is so important that they strive to be more representative. Director Adam Finch covers the topic really well and with a style that suits the fashion industry to the ground.

Something I’m rather proud of is that I provided all of the music for the film. So if you need a theme tune or soundtrack for your project please get in touch. These tracks are rather dance orientated but I can do pretty much what you need. Plug, plug.

So take a look and see that soon disability will be the next big thing. Darling.

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