If you’re like me, either disabled or a little lazy or both, the idea of exercise fills you with dread. The idea of going to the gym, or going jogging or any of the other activities that lead to a healthier lifestyle just don’t appeal. I much prefer sitting on the sofa, watching a good box set, maybe scoffing a bar or two of chocolate. I might do dancing very occasionally, but otherwise the most exercise I do is wheeling my wheelchair to the shops to buy more chocolate. The problem is that now I’ve hit 50 my body is no longer OK with such a level of inactivity. If I want to stay healthy now that I’m middle aged I need to start doing… something! So I thought I’d start trying to get fit… well fitter and I thought I’d take you all on that journey by videoing myself every day in a series I’m calling Fit At Fifty.
OK, that all sounds great but who wants to watch an aging wheelchair user struggle to get fit? Well, with that in mind I promise to keep the films fun, light and aimed at anyone like me who finds the whole idea of activity a real turn off. If you dream of having a para-athletes body, these aren’t the videos for you. But if you want to be a little fitter, a little more active, but don’t know where to start I hope I might help. My first tip to a healthier lifestyle is set yourself goals. I want to be a little thinner, be able to do a little more and to feel a bit more like I did in my youth. Again I don’t want to be competing with David Weir or winning gold at any sport, but I do fancy keeping old age at bay for a bit longer. With that in mind I also set myself the goal of taking part in the mass participation event, Parallel London that’s being held at the Queen Elizabeth Park in Stratford on September 3rd this year. It’s so much more than a sporty day out, with loads to do for all the family, but it features 10k, 5k, 1k, and 100m run/walk/wheel events and an amazing 1k sensory walk too. My plan is to be fit enough to do one of the events, but I’m not saying which yet… not going to commit myself to too bigger a distance until I know how Fit At Fifty is going. I know that when you set yourself goals they have to be achievable, especially early on in your drive to get fit.
Now while I few tips are fine, and trust me much of Fit At Fifty will be me talking to camera as I haven’t worked out how to attach my mobile phone to my chair yet so I can’t wheel and film, I also am planning to do some guides to techniques for getting fitter. One technique that has really worked for me is Sit Yoga. I discovered it by accident while searching for a low impact way of exercising. One of the joys of aging, especially for wheelchair users, is we damage our shoulders. A physiotherapist told me recently that by the age of 50 nearly all people in the UK have some damage to the ligaments and tendons that hold the shoulder in place. I also have arthritis in both shoulders as I use them to do the work of both my arms and legs. You know wheeling my chair takes it’s toll, and after 36 years on wheels the damage is starting to show. So I wanted to find a way of exercising my arms without making any damage worse. Sit Yoga has proved to be perfect. Not only has it given me added strength and flexibility, but it has eased the pain I get from my knackered shoulders. I downloaded a 6 minute Sit Yoga workout aimed at office workers, and adapted it for my needs.
These are the first three videos in the series. I am planning to keep a regular blog as I go, plus if you want to watch the videos as they are up loaded you could follow me on Twitter, Facebook, or Instagram. They will also all be uploaded to my Youtube channel, and will have subtitles once I’ve battled to transcribe them. In the meantime, remember the mantra for Fit At Fifty is Fitness should be Fun. Join me as I try to get fitter, try some of my ideas if you also want to try to get fitter or you could just laugh as I puff my way to a fitter Mik. I should also point out there will be more cake, coffee and beer involved than in any other fitness video series.
In life there are things that pull on your creative heart strings and shape you life from then on. Watching Gerry Anderson’s Captain Scarlet and Thunderbirds on TV, reading I Robot by Issac Asimov and the first issue of 2000AD, hearing Replicas by Tubeway Army and Black Celebration by Depeche Mode, witnessing Salvador Dali’s work close up and visiting the ballet for the first time are just a few artistic moments that touched me so deeply I can still remember them like they were yesterday, despite some of them being a very long time ago. Sadly as I get older the instances when I experience new art that reaches into my soul and alters it become fewer with each passing year. I was starting to worry I was getting jaded in my old age, but recently I saw a play that proved I can still be enthralled.
I wasn’t overly keen on seeing Cosmic Trigger, as it sounded a bit too “hippy” for my punk sensibilities. The punk mantra was never trust a hippy, a play about expanding your mind based on the work of the famous hippy writer Robert Anon Wilson didn’t exactly float my boat. As I sat, ready to experience a 3 hour play with trepidation, I was not prepared for just how amazing it would be. I won’t do a blow by blow exploration of the story as I would hate to spoil it and to be honest, I’m still not sure I understood all of it. What I will say is that if you get a chance, and like your theatre up close and personal, Cosmic Trigger is a must see.
It’s a cliché I know, but Cosmic Trigger is very much a rollercoaster, as you flip from laughter to tears, from understanding to bewilderment, and from yesterday to today as the piece grabs you and flings you all over time and space. You really feel as if Dr Who had a hand in writing the piece. What makes the piece mesmerizing is the cast, who go above and beyond in their duty to transport you from era to era, from reality to fantasy and back. As an actor myself, I marveled at the courage and skill of a cast whose performances made an ageing punk like me come over all hippified.
I left the Cockpit Theatre in Camden, with a very different take on a pile of subjects. I was a little troubled by this new desire to tune in and turn on, but what really touched a nerve was the play’s mantra to question everything. We live in an era where faith in those who lead us and the words of experts has been shaken to the core, but this play questions the foundation of why we might have lost faith. It asks us to go deeper than mistrust and examine everything for ourselves from the position of knowledge. Don’t let the press or media tell you what to think, and the play spends a good hour on subtly explaining how the press will say anything if it fits an agenda or brings in readers. Instead expand your knowledge through personal research and exploration. OK Robert Anton Wilson did the exploring with the aid of LSD, which we see didn’t exactly lead to rational conclusions, but the concept is good.
I think Cosmic Trigger is a play for today, despite it being so firmly based in yesterday. Never before have we needed a reason to question, and Cosmic Trigger shows the way. OK, it might be a bumpy ride, and you might get lost down the road, but in the end it will be a fun journey. You may also find yourself going all peace and love man…..
Photos © Johnathan Greet, by permission.
First published Huffington Post 06.04.2017
In the first of my PIP Diaries I explored how finding myself thrown into the process of being reassessed for the new Personal Independence Payment made me feel. After being placed on an indefinite award for the so called “disability benefit” Disability Living Allowance that PIP replaced way back in the 1980’s, it was a shock to have to re-examine my life and abilities. I was stunned at the number of comments on the piece, and how it touched a nerve with so many other people who were either going through the process or had gone through it. The comments from that group were rather doomed ladened, and so as a large brown envelope fell through my front door I found myself filled with dread.
Before I regale you with stories of forms and piles of evidence to be scanned, I must point out that both DLA, and PIP are not out of work benefits. You can work and be in receipt of PIP. In fact they were created to help people cover the extra costs of being disabled which can mean many disabled people are able to work thanks to getting them. So when I say that I am rather good at filling in forms as it has always been part of my job, I’m not admitting I’ve spent a life on the benefits fiddle. As a youngster I worked in the benefits system, helping people make their first claims for dole and supplementary benefit, and learned how to fill in forms in a manner that ensures you give the right information. After that I worked in the media, helping create schedules for filming days and I now create audits and training guides around inclusion and accessibility. Thus forms are one of my key skills. Yet even I found my pen hovering over each page, unsure what to put.
Each double page covers an area of your life, things like getting washed and dressed to managing money, yet it isn’t exactly helpful in what you should put. You are asked do you need help? Yes? No? Sometimes? What on earth does sometimes mean? Once a day, once a week, once a month, or maybe once a year? Or is once a day a yes answer? Would once a year mean a no? There are pages of this. Next to the “simple” yes, no, sometimes questions, there is a page for more detail if required. I’d guess that if you didn’t fill this section in you would get very far. Yet how do you complete this to explain complex medical issues and detail the ways you are helped to live? As I said I’m really good with forms, yet with each page I got more and more nervous. Was I doing this right? Finally I finished, and had to just hope so.
Next I collated medical letters from the various specialists involved in my medical treatment. Some are years old as why keep seeing experts, costing the NHS money, when I cannot be cured and my situation is static? Will the assessors understand that not seeing a specialist is not a sign of being cured or healed, but that a condition cannot be treated any further? More worrying is as I read through each letter I noticed that my diagnosis and prognosis varied wildly. I sat, shocked as I realised that there was no clarity around my medical condition. In fact some were so dangerously wrong I’ve had to get in touch to arrange an appointment to correct the errors urgently. As I scanned each page I felt a growing wave of fear, as while I understand where the errors lie, how could the assessors? With some actually contradicting each other, another fear gripped me. While I placed my forms and supporting docs in the envelope ready to send to the DWP I felt sure I would end up requiring a face-to-face meeting with one of the dreaded assessors. Thinking positively, this might hopefully allow me to clear up exactly what my medical issues are and what I can and cannot do, with or without help. Or not! As I slipped the stuffed envelope in to the post box I felt numb, with no idea what would come next.
Thus ends the second of my PIP diaries. I’m still shocked at how exploring my life in the mirror of what I cannot do has hit my confidence. I also now am gripped by a fear that a benefit that ensures I can work, as it funds my car through the Motability scheme, may be taken away from me. With the horror stories of people with obvious impairments that equally make walking impossible losing their PIP funding it is a real possibility. Of course looking on the bright side, with my medical records having so many mistakes in them, I’m damn lucky I’m here at all!
With that cheerful thought I shall leave you, ready for the next installment in my PIP dairies. Will I have to face the dreaded assessors? Will they visit me at home or will I need to battle my way to their lair? All this and more next time.
Photos Mik Scarlet 2017
OK, I know I’ve been terrible about putting stuff on my website. To be honest I’ve had an awful year so far with technology. My computer died on me, thanks to a Windows 10 update that killed my Windows 7 operating system. I was also still recovering from my broken leg, a saga I will regale you with another time, and to be honest not much was happening I wanted to tell the world about. However, I’m now out of my plaster and life is fun again. There’s loads to catch up on too, so keep you eyes out for more posts soon.
In March I found myself in a packed comedy club in East London, about to do my first attempt at stand up. I’d been asked by the BBC to take part in an event called Storytelling Live, that was being put on by BBC Ouch. I was one of seven disabled people, some comedians and some not, who were going to tell their story about love or relationships. I chose to tell the story of how i came to terms with my sexual dysfunction, but in a way that would put the audience at ease. And it worked, phew! The room laughed all the way through my set, despite it being a rather personal one, and I left the stage buzzing, sure I would do more comedy.
The event was being filmed by the BBC and soon an edited version of my set went live on the BBC News On-line website. Within the first 24 hours of going live, it had been watched by over 1.5 million people, and was number 6 in the most watched on-line videos for the BBC. So now everyone knows about my willy! Since then I’ve been asked to help on a project that aims to advise GP’s and medical professionals how to help people who have lost the ability to work like they should in the bedroom department, which is amazing. I am very lucky, as I am totally happy with the way my body works and have an amazing sex life, but I know most people who loose the ability to sex like they teach you in text books think that’s the end of their sex life. So to do something to change that, however small, is amazing.
Anyway, without further rambling, the article I wrote for the BBC and the video clip of my stand up routine can be found here. As soon as it goes live on Youtube I’ll put the link up.
Before I go, this is the cartoon of me from the BBC art department. Cool huh?
This the first in a series of diaries charting my journey as I am assessed for the new Personal Independence Payment.
In 1981 my spine collapsed, leaving me paralysed. After I came out of hospital I applied for two benefits called Attendance Allowance and Mobility Allowance. I was assessed by a medical expert, who interviewed me and liaised with the medical professionals helping with my treatment to ensure they understood my case. I was awarded an indefinite award of both allowances as it was clear my disability was one that would never improve. Years later these benefits were combined into Disability Living Allowance and my award was ported across as my impairment was still would never get better, and in truth it would only get worse over time.
This Monday I received a letter from the DWP which I had been dreading. I am to be reassessed for eligibility for the replacement to DLA, Personal Independence Payments or PIP. I immediately rang the number on the letter and was helped through the first part of my claim in a very helpful and friendly manner. I am now waiting for the forms to be posted to me, which I will then need to fill in detailing every detail about my current abilities and medical conditions. I will also need to collect a large amount of evidence to support my claim. I plan to write about this process in future columns here on the Huff. In this article I wanted to explore how having to examine my physical abilities and list how they impact on my life is making me feel, something that is left out of the current debate around the roll out of PIP.
After so long as a disabled person I have got totally used to my life. I have a wonderful wife, who has been with me for 21 years, who helps me with day-to-day stuff. Our relationship works amazingly well, despite the fact that she does things for me that she would not do if I was not disabled. We work so well together that neither of us think about this kind of thing at all. Well we didn’t think about who does what for whom until now. Now I have to prepare to list everything that I cannot do, or need help doing and then list how my wife Diane helps me. I will need to get every doctor and medical professional to write letters outlining my medical issues, what treatments I have had and am still having and how these impact on my life and abilities. I am stunned at how I feel about this examination of my personal life.
I found myself filled with waves of sadness and self doubt while I was in the bath. I need help getting in and out of the bath as my shoulders have arthritis, meaning I find it hard to weight bare unaided. I could have a shower put in, but baths stop the spasms in my legs which cause me a great deal of pain. I also need help washing my back as my shoulders lock and once I’m out of the bath I require help with drying and Diane holds me up as I dry myself, in case I slip during the drying process. I have never told anyone this. Not even the medical professionals in my life, as I feel this is personal. Yet this is just one element of what my wife does for me every day. I was shocked at how long the list of things I need help with actually is. So there I was, sat in the bath feeling awful as I mentally listed everything Diane does for me, and the guilt was palpable. The feeling that my wonderful wife was burdened with me washed over me like soap. I have never felt like that before.
What is most tragic is that the money I get in DLA does not even go to Diane. She does all these things for free, out of love for me. Instead the mobility element goes towards paying for my car, which I lease from Motability. The care element I use to pay for things like wheelchairs. Just one of my current wheelchairs cost me over £5000. I buy new tyres on a yearly basis, which comes to around £60. A new cushion is over £250. Wheels are over £1500 per pair. The list goes on. And that’s just my wheelchair. The disability charity Scope calculate that disabled people have on average extra costs of £550 per month, and that is what DLA and PIP are meant to help with. Not totally cover, but help towards.
As I was helped out of the bath, I admitted to my wife how I was feeling and she hugged me. She told me I was not a burden, yet I can’t under estimate how much beginning the PIP application process has impacted on my confidence and mental health. And the saga has only just begun…
First published on the Huffington Post 22.03.2017
I’ve let my website slide recently, mostly as I’ve been really busy with work. Alongside my usual stuff, I landed an amazing job working with Martyn Sibley, Sophie Morgan and Chelsey Jay as part of a presenting team fronting a series of videos about accessible tourism for the website Britain Is Great.
I was lucky enough to be sent to the Norfolk Broads, a region I have always wanted to visit and it fell in love. Stunning countryside with so much to do and such a dedication to making it accessible. I can’t wait to go back. In the meantime here is the film I made.
As well as going yachting I also got to try something else I’ve never done before, going up the Shard. Now I’m afraid of heights but this was something I had to do, and boy was it worth it. To be so high above London was breath taking and yet again the access was second to none. Here’s that film.
On top of these great films I did two on using Scotrail trains to get around Scotland. As soon as they are live I’ll put up the links.
I am really proud of these films, and to have worked for the production company Geocast TV. A great bunch who shoot superb films. I really hope they have me back.
After a while waiting for this series of stories to go live, I am proud to announce that Disability Now has published a special series on the subject of Cybernetics what I have wrote. I spent a long while rushing around the country meeting experts, builder and users of the most up to date bionics and found out what tomorrow might bring. As I did this I wanted to look deeper at what the advancements in this technology might mean for disabled and non-disabled people in the future. It’s an entirely new way of looking at the subject and I am really happy with the finished product.
Bionics: “We have the technology” – In this part I find out what cybernetic technology can currently offer and what may be around the corner.
Bionics: Who’s Disabled Now? – So if technology might be able to rebuild or repair disabled people, I explore whether we should go down that road. What would it’s use say for the wider society and disabled people’s identity?
Bionics: The Right To Choose – I finish the series by asking disabled people who use current bionic tech what they think about the wider implications of augmenting their bodies in this way.
Disability Now Podcast: Bionics Special – To round up the up the series I took part in the monthly DN podcast to discuss the issue. It’s a great listen.
I hope after you’ve read the articles and listened the to podcast you have had to examine the subject a little differently. Far too often society sees any advancement of technology as a good thing but as this field of science reaches a point where more and more is possible I wanted to just ask “before we do run towards a future when technology can fix impairments, have we stopped to ask what it might lead to?” I’m not against this kind of tech, in fact working on the series has made me much more open to it that I was before, but all scientific advancements must be explored to ensure we see what might be coming. That way we can all be ready.
Oh dear, I’ve been rather remiss on my website updates recently but I can blame it on being too busy actually writing stuff for publication. My Huffington Post column has been a hive of activity so if you haven’t seen them be ready for a lot of reading. Trust me though, they cover lots of topics and are all a fun read.
I say fun, but the first is more serious. As part of the Huff’s campaign to get more disabled people in modelling that they have run throughout February together with Models of Diversity, a campaigning group I wholeheartedly support, I wrote something exploring how the lack of representation in the media and fashion worlds mirror a wider issue around inclusion. While a serious story it included a snap of me modelling way back in 1996, when I was the first disabled model to do catwalk at LFW. Enjoy – Have We Really Said Goodbye to the Back of the Bus?
Following in the more political vein, I next explored my worries about the government’s proposed Housing Bill and how some elements of it might negatively impact on disabled people. It followed some rather unpleasant exchanges on Twitter, but then what do you expect from a society that has painted disabled people as scroungers? What was most funny was I was raising an issue around Pay To Stay which only effects those working, yet my concerns led to Twitter Twats going for the old “you disabled people with all your benefits” line. I won’t say much more, as you can get the full skinny from reading the article – Is It Really So Hard To Understand?
After so much serious stuff I needed a bit of light relief. So after a wonderful night at the launch of Graeae Theatre Company’s new artistic collaboration with the Central Illustration Agency (yes they are called the CIA!) I felt the need to tell the world about – Reframing The Myth. Hope the review drives you to see the exhibition as it is wonderful.
Talking of wonderful, another event that I just had to tell the world about was my taking part in the Southbank Centre’s Dahl In A Day reading of Roald Dahl’s Matilda, as part of their Imagine Kid’s Festival. I total joy to be asked and to see so many children transfixed as I told Miss Honey’s Story.
Lastly I had the honour of getting a sneak peak at the new Gary Numan documentary, Android In La La Land. As a life long Numanoid, it was a real joy to see the human side of Mr Numan. It’s going to be a must see for any music fan, but as it explores his recent diagnosis of Asperger’s it also will be o much interest for anyone who has been touched by Neurodiversity. Or if you just like great, up beat, life affirming music docs.
So that was it. I’ve also had loads published in other outlet’s but that’s another post. For now, enjoy reading and I promise to be more conscientious on the website from now on. Is that a resolution for 2016? Yes!