This weekend Diane and me are off to enjoy Derby Feste, the city’s annual arts festival. It’s always a thoroughly enjoyable weekend for us, as Derby is one of those places that gets access for disabled people and so allows the disabled visitor to switch off while they are there. When you combine this freedom with a fun filled itinerary of arts for all the family, from street theatre through to the music and firework extravaganza that ends the festival, which this year is courtesy of Les Commandos Percu and Deabru Beltzak, it’s one of those events that is a must see. Luckily I will be accompanied by my mate and local actor Emily Howlett, founding member of Deaf Arts company PAD Productions, who will be giving me the skinny on the secret side of Derby. I am planning a review for the Huff, both of the festival and of any key shows that grab my eye. So watch this space. And if you are knocking around Derby this weekend and see Di and me come and say Hi! Especially if you have something in mind that you think we just have to see!
Been rushed off my wheels recently. Been writing and appearing at events all over the country. Here’s a round up of events so far!
Things started off rather glamorously as Diane and me were invited to the launch of Firetrap’s Deadly Denim ad campaign in East London. It was a great night, and we even danced.
Next I was asked to appear at a literary event in Brighton, called Sea Changers. It was an amazing night, and a real honour to be involved with such talented writers, all of whom campaign to make the world a better place. However, it was a little marred by how inaccessible Brighton is as a town. I wrote an article for the Huffington Post exploring how inaccessibility leads to disabled people being seen as a problem and now part of the community which was then taken up by the local Brighton and Hove Independent.
Then I went to an event at Channel 4, which I covered for Disability Now. They announced the launch of the channel’s commitment to ensure inclusive casting of disabled actors in their future dramatic output. However, I won’t deny I have been to a few of these things, so I will believe it when I see it. I also met some talented actors, and smoozed as usual.
I also began running Disability Equality Training for Leonard Cheshire Disability in November. The plan is to roll it out next year, and if a business wants to hire us they will get a bespoke training course created for their business and sector. It means I have to dress rather smartly too.
Lastly it was off to the BBC, for the Xmas edition of the BBC Ouch podcast. It was a great show and as soon as it goes live I will post the link. I do like getting paid to have a laugh and eat mince pies. I just pity Damon Rose, BBC Ouch’s editor, as it will be a nightmare to cut.
This weekend I am off for a break in Cardiff. Two days of respite, with nothing to do but shop, rest and eat. Then it’s off to Roma Sports to collect my new Vida wheelchair. Can’t say too much until I collect it, but it is a totally bespoke wheelchair at the cost of the standard wheelchair. And it looks amazing too. I will be reviewing the chair for Disability Now very soon.
So that’s it for now. There was more but I have forgotten it right now. Well, it is nearly Christmas! Can’t wait!
I have finally gone corporate, as my new website dedicated to my access consultancy and training business. It is now available at Mik Scarlet Access.
I’ve been working in the field for many years, especially since 2010 when I completed my training. I have had some major successes and am proud of the work I have done to make our society more accessible and inclusive. So if you require the services of someone to ensure your business is accessible, whether your physical environment or your business practice, or you want to to provide top quality training for your staff please get in touch. This isn’t just a job for me, it’s a vocation. I really want to make the world better for the generations of disabled people who will follow mine.
I should also like to point out that site was created for me in less than a day by my wonderful wife, through her web design business Site By Diane. So if you like what you see, contact her as not only will she build you an amazing site, but she’ll do it quick and at a great price!
What a busy bee I have been recently. It started with a great couple of days playing music and recording vocals for a project run by Drake Music. I spent two days with some great people, including the amazing John Kelly, and can’t wait to hear the results. We took the old jazz track Chinatown, My Chinatown and bent it right out of shape. It’s now too cool for school!
Talking of school, after having my love of music rekindled it was off to my old school to record for an BBC3CR documentary I’m making on Inclusive Education. I spent a day chatting with the students, interviewing the staff and then I was called to the head teacher’s office. Luckily now I’m an adult I wasn’t in trouble, so instead we had a nice chat about how mixing disabled and non-disabled students together in a school helps everyone concerned. I know this as I was the first disabled student at my school and now it’s a center of excellence for the area. All because of me of course…. NOT! I’m amazed I didn’t put Mr Price off the idea. He was the head teacher back in my day who introduced the concept of inclusive ed to Bedfordshire. The program should be going out on Sunday July 27th. Keep you posted when I know more!
Tomorrow I’m off to the opening of the Imperial Was Museum’s grand opening of the WW! galleries and the new atrium. I worked on the access and can’t wait to see how it turned out. So good for a few free drinkies I hope.
Then on Friday it’s off to fight the good fight on Assisted Dying. I’m joining the lobby outside the House of Lords while they debate the new bill. To be honest it’s going to be scary as both the pro and anti groups will be there…. fight! To wind down after the day in the evening it’s off to Kew Gardens for Kew The Music, with Jools Holland and Marc Almond. Lots of singing at the top of my voice while eating sandwiches and drinking elderflower cordial. End the week on my idea of culture! (But no rest for the wicked as over the weekend I have to edit my radio doc…. eeek!)
Well it’s been a strange month. After starting off crazily busy, both with work and finally grabbing a social life I am now unwell. Boo! I have had to retire from the outside world while I recover from a flare up of an injury I gained while rehearsing for the Paralympic Opening Ceremonies. It was actually caused by the appalling access at the rehearsal spaces, and has been my Paralympic legacy ever since.
However enough moaning. Even though I have been stuck in bed I have still been working (no rest for the wicked), and have had a few articles published. The first came out of of taking part in the Disability Now Download podcast. We recorded it just before I crapped out, and it was great fun. It really comes accross too. You can listen to it here. As part of the discussion we explored the concept of disabled heroes, especially as a recent poll voted the UK’s top three national heroes as disabled people. Which set me thinking, what about those of us who don’t like the idea of being all goody goody. So I asked myself, where have all the bad roles models gone in “Rebel Rebel – Wanted, heroes with Badass Style“. I didn’t write the title, but the piece has caused a real discussion in the disabled community about what heroes and role models actually mean to us.
On top of talking about heroes, I have had the second part in my series for Miss Alice Gray’s website on sex and disability. The first one “Sex & Disability – The Question That Never Stops Being Asked” was well recieved, but that explored attitudes towards disability and sex. In the second part “Sex & Disability – The Ins and Outs of the Old In and Out” I give a few ideas on actually doing the deed. Oh yes, Mik get’s smutty again. Sex, sex, sex it’s all he ever thinks about….
Anyway, there are a few more that will be coming out soon, this watch this space.
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.
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.
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!
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.
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!
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…..
I have just had the first of a series of articles for various publications about a recent trip to the city of Barcelona go live on the Huffington Post website.
This one is about what a great city it is for disabled people as it is very accessible, and asks why London can’t be as good. Answer’s on a postcard please.
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.
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.
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.
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.
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?
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.
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.