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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Shrink Wrap this weekend on BBC3CR

The face for radio?

A face for radio?

This Sunday I am appearing on the BBC 3 Counties radio show Shrink Wrap, chatting about my experiences of education. The show is all about Inclusive Education and SEN provision, so I went off to Putteridge High School, my old high, to chat with the students and staff about what it is like to go to a mainstream school if you have an impairment. I was the first disabled kid to attend Putteridge and I know how much it set me up to be the man I am today. The biggest thing I gained from my time at school is the knowledge that just because I have an impairment doesn’t mean I am any less than anyone else, just different. One thing’s for sure… I like being different!

Mikat BBC3CR with Chetna and Toby

In The Studio – Mik at BBC3CR with Chetna and Toby

It is a rather serious subject, and as I sat in the studio listening to Chetna Kang and Toby Friedner, the programs regular hosts, chat with experts about SEN provision and the forthcoming changes on how it works I felt very sorry for parents of disabled kids today. In the program I chat with my Mum to find out what it was like for her way back when I was tiny, but it’s nothing to the hops parents have to jump through now. Typically when it was my turn to join in the atmosphere cheers up to the max, but even though I do like a bit of humour I do hope my key message comes through. I truly believe that we need to work towards an education system that allows everyone to attend the same school, with the chance to study to whatever the child#s ability level is and that allows children to grow up understanding that disability is just part of life. Let’s hope that it happens one day eh?

To hear the show, either tune in to BBC3CR on 95.5FM or 103.8FM or listen via i-Player.

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New Article Round-Up

Here’s a round up of some of my recent articles.

First is a  piece on Wheelchair Dance in Disability Now, as it doesn’t matter whether you live on wheels, legs or both you can cut a rug on the dancefloor.

Then I have an article on sex and disability published on Miss Alice Gray‘s website. It’s the first of a two parter, with the second art being more of a “how-to” guide to sexiness and disability.

I have also joined the writing team at Disability Horizons as an occasional contributor. My first story for them was about dressing up for the party season if you are disabled, called Festive Fashion, but it works for all times of year. You know me, I never need a reason to dress to impress… or shock! The next article for DH is on the recent casting at the BBC for the cream of disabled acting talent which asks Is It Time For Our Close Up? Ages back I wrote my views on Assisted Suicide, so if you missed it maybe check it out.

You can also check out my column in PosAbility magazine at their online portal. It’s not the most recent, but keep checking back as they update it regularly.

So that about it for now. Got loads of new articles coming up, so I’ll keep you all posted.

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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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Huffington Frenzy

Recently I’ve had a few comment pieces published on the Huffington Post website.

Most recent is one about an experience going for an MRI scan at a private health clinic through my GP. Called “Is The A Taste Of Tomorrow’s NHS? it describes my nightmarish trip to be scanned in all it’s glory.

Before that I wrote about some people’s obsession with the idea that faith can cure disabled and sick people in “Faith? Please Cure Us Of This Myth“. It might seem that there is truth in the idea but I ask is that right or even helpful?

To start the whole frenzy off I had my ode to love, luck and my wonderful wife Diane “Oh, Lucky Man” published. So glad they accepted it as it was our 8th wedding anniversary that week. Di loved it, I hope you do too.

On top of that I had my travel article on our recent trip to Barcelona published on Disability Now Online, “La Merce: a weekend in Barcelona” and if you want to read back issues of PosAbility magazine with my column in you can do it online now.

All this of this writing was drafted using a pen and paper. Old fashioned I know but I am currently studying a Creative Writing course at the OU and they advise students to do it this way. It really helps too. You can get those ideas out without fighting with a keyboard or other bits of tech. I really am a Luddite Mik eh?

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Access All Areas review

Access All Areas CoverMy review of the art book Access All Areas, Live Arts and Disability have just gone live on the A-N website.

Here the full version of it.

Access All Areas – Live Art and Disability

For several decades a growing group of highly talented artists have been honing their skills and developing their methods and techniques in their goal to create engaging, challenging, though provoking work that is also beautiful and stunning while leaving an indelible valuable mark on whoever interacts with it. This group are members of what is euphemistically called the Disability Arts scene, and they use their mediums to explore the issues that disability raises in our modern society. One major element of this groups methodology is the use of Live Art. Creating engaging interactive Live Art works enables practitioners to explore the questions around the barriers thrown up into the lives of disabled people by the wider society, as described by the Social Model of Disability, examine their personal journey through their experience of impairment and challenge the wider stereotypes of what it is like to live in a society that disables some of it’s members. The Disability Arts scene has been mostly hidden away from the judging gaze of the wider arts community but all that is changing. This stunning book Access All Areas, Live Art and Disability, published through the Live Arts Development Agency, captures the creative explosion that took place at a two day event, called Access All Areas, held in London in 2011 that highlighted the very best in Live Art practise within the Disability Arts scene and exposed them to the public and the wider art world.

However to describe this book only as a document of this event sells it short. It is in fact a combination of a stunning collection of works by the cream of Disability Arts scene’s Live Art creatives and a challenging piece of artistic work in itself that I feel will become an essential snapshot of a moment in the evolution of an new artistic force as it breaks through in to the mainstream. The book has captured the two day programme of the Access All Areas event in a manner that enables its reader to feel as if they had been there, and then guides them through the issues raised, all in an exciting and creative style. Made with the input of the artists it really is an amazing publication.

But it doesn’t stop with the written word, as the publication is accompanied by two DVD’s. DVD 2 captures essential video highlights from past works of the stars of the Disability Arts scene, all of which were screened at the Access All Areas event, and DVD 1 allows the viewer to virtually attend the event as it contains video taken through out the programme. It also has an audio version of the entire book and audio recordings of the dialogues and discussions held over the two days.

On an accessibility front this book/DVD package is one of the first accessible publications I have had the pleasure of interacting with. Printed in a cleverly laid out large font with the DVD’s fully subtitled, fully audio described and very well thought out, Access All Area, Live Art and Disability demonstrates that the barriers that disable people can be removed in such a way to enhance the experience of all users. How many books have you read that allow you to actually interact with the research material? This accessibility also means that the publication will be an amazing resource for the academic study of Disability Arts, as it contains in a one stop shop such a rich collection of creative output, discussion of practise and the thought processes behind that creativity and the wider social issues that the artists wish to explore.

I am proud to have Access All Areas, Live Arts and Disability on my bookshelf. It’s a publication that encapsulates the wealth of creative talent beavering away within the Disability Arts scene, contains the very best of their work, intelligent comment and discussion of process and practise, and looks great too. I believe it will become a seminal publication, not only for the Disability Arts world which it exposes beautifully but for the wider arts community as it demonstrates how make art books accessible. A must have for anyone interested in the arts and creative practise.

Access All Areas, Live Arts and Disability can be ordered by clicking here

Review by Mik Scarlet © 2013

“This writing was first published on Interface 30/10/13 www.a-n.co.uk/interface as the result of a book giveaway by Live Art Development Agency/Unbound”.

It can also be found on the Huffington Post Lifestyle section.

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Stop Press

Lots of news from Scarlet Towers.

I have just been asked to join the editorial team at the lifestyle website the Fabulous Times to cover events. So lots of trips to fabulous places and parties… I hope. My first story for them is about a visit to the V&A‘s Pearls expo. For the photos I took pop off to Flickr.

I also have another article up on the Huffington Post, called What Did You Just Call Me? about disability and language. As some one who works in disability awareness training I know how important language can be when describing disabled people, yet I also want to reclaim many of the words that are thought of as “bad”. I wonder what you think on the subject? Take a look and maybe leave a comment.

This Friday I am appearing at an event in Sheffield to celebrate the 10th aniversary of Disability Sheffield. To book a place visit here. It being held at St Mary’s Church and Conference Centre, Bramall Ln, S2 Sheffield from 10:30 to 15:30. So maybe see you there?

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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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