Listy McListFace!

Wow, what a month! I’m feeling really honoured at the moment.

First I was sent a link to a document that listed me as one of 238 most trusted journalists from the NCTJ, with some super respected names. The list was voted for by other journalists too so it was stunning to be nominated by my peers.

The cover of the NCTJ list of trusted journalists

A page on the trusted journalists list with Mik's name

I mean, I’m up there with Frances Ryan, Jon Snow and Kate Adie! Just super WOW!

Then last night I attended the launch of the Shaw Trust Power 100. This is an annual list of disabled people who are shaping the future in some way… and guess what? I was on it! For my work in the media and journalism.

Mik poses in front of a purple backdrop, with the Shaw Trust Power 100 2018 on it

It’s weird because you work away just getting on with it, not really thinking about acknowledgement. Then all of a sudden you find yourself being held up as a role model and someone who is making real change, as well as being trust worth by your peers! (yes still a bit blown away by that one!)

Mik  poses wiith fellow Power 100 listers.

So many other amazing disabled people are on the Power 100 list, I am in such esteemed company.

A photo of the power 100 book, with MIk's page open too

Still a bit fragile after last night, as the wine did flow a little too freely. I’ll take a better picture of my Power 100 page soon. In the meantime, here’s a photo that’s as blurry as I feel today!

 

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Taking The Pain Out Of Letting The Train Take The Strain

I haven’t had much time recently I write as I’ve been rushing around the country with my work as an equality and inclusion trainer, and much of that rushing has been done on the train. As a disabled passenger I have to face the constant fear that my journey will fail due to a mix up around the assistance I need to train by train. If you believe the news and media disabled people never have a good experience when using any form of public transport, and while we do all have many nightmare stories it is mostly getting better year on year. One of my major clients is Network Rail and I train their customer facing staff to give high quality assistance to disabled train users. I also have trained senior management on how to develop policies that ensure the needs of disabled passengers are at the heart of decision making within Network Rail. I tend to find my train journeys go fairly smoothly, but I have faced the usual issues. I’ve found myself on long journeys with no accessible toilet provision, I’ve been forgotten on trains when they terminate meaning I wait for ages to be gotten off and have even crawled out of a carriage, and have been stuck on a train as it leaves my destination station because no assistance has arrived.
So it’s with a happy heart that I can announce a good news story for disabled rail passengers that may make these events a thing of the past.
Last week I was lucky enough to be invited, by Paralympian and campaigner Anne Wafula-Strike, to the Rail Delivery Group’s London offices for a demonstration of their new Accessibility App. Within the rail industry there has been talk of this fabled app for many years, but it is now ready to announce to the traveling public. Hooray. With a final roll out time of autumn 2019, following a period where rail staff from every company involved in the UK’s rail network, this app does appear to be a real game changer for disabled people. The plan is for this app, downloadable for Apple and Android phones, to run alongside the existing assistance process, but also to allow rail staff to have access to all assistance requests in real time. So if you prefer to either use the phone or web based services to request assistance to travel you can, but the staff member will get the information about your travel requests on the app, via a smart phone or tablet. The new element for the passenger is how the app itself allows you to do everything on your phone too. It is also makes the process of Turn Up And Go much easier and more efficient.
The first innovation is that when you start using the app, you set up an account which then records all of your access requirements, meaning you never need to repeat them again. Any disabled rail user knows the frustration of repeating your access needs over and over, and then finding they have been noted down incorrectly. Once the app is rolled out you will be able to ensure your details are correct, and change them in real time too. You can also highlight your journeys and then request assistance. This is sent to the staff on the day of travel, after being checked and noted by rail staff. The true benefit is for people who cannot or do not want to book assistance in advance. You can get up, decide to take a journey and as you travel to the station or after buying your tickets request assistance, and it is sent immediately to the station you are traveling from and to.
During the demonstration, Anne Wafula-Strike and myself were very impressed. Anne stated “Although passenger assistance usually works, I’ve had awful experiences when it has failed so it’s great to see the rail industry addressing this and planning to change and improve for the benefit of disabled people. The app will make it so much easier to get assistance, and more importantly it will empower disabled people to travel without any fear. This is truly inclusion.”. Sarah Ward from Shrewsbury, who uses a wheelchair and has Asperger’s Syndrome, has been trialing the app since May and found it made a big difference to her experience of rail travel. “For me, the current system of booking assistance in advance is really frustrating. Whilst staff are generally really helpful, it’s not very flexible, and it often feels like I have to fit into the system, rather than the system working for me. With the app, I’ve found everything so much easier. It’s great being able to do things, on the spot, literally at the touch of a button. I think that the app provides a really positive step in opening up rail travel to disabled people. It has enabled me to be much more flexible with my travel plans, and it’s given me much more confidence in making journeys.”
Access App screen grab - Booked Journeys
Let’s hope that this is the beginning of a flurry of good news stories about disabled people and transport. I know from my own experience in the rail industry that there is a genuine desire to improve the service for disabled people and that this app will make it much easier for us all to travel by rail. If you are disabled and have avoided taking the train due to past bad experiences, the time may soon be right to dust off your hobo attitude and ride the rails again.

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Fit At Fifty – Time To Get Fit!

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.

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Cosmic Trigger – Pull It If You Can

Cosmic Trigger - Cast members dressed in black, while one plays the accordian.

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.

Cosmic Trigger - The cast dressed as prison inmates, all on orange jumpsuits, singing.

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.

Cosmic Trigger - The stage is filled with actors dressed as a black mass

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.

Cosmic Trigger - Actress dressed as a goddess with a sword and shield

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.

Cosmic Trigger - the cast salute the audience at the end of the show

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…..

Cosmic Trigger is on at the Cockpit Theatre until May 27th

Photos © Johnathan Greet, by permission.

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My PIP Diary Part Two – The Battle Through Paperwork Mountain

First published Huffington Post 06.04.2017

A black and white negative photo of a DWP PIP form with a pen laid over it, as if it was being filled in.

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.

A black and white photo of Mik Scarlet's face peaking over a pile of letters from his doctors and surgeons.

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

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Sit Down/Stand Up

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.

Mik on stage doing his stand up routine, with a BSL signer next to himIn 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.

Mik backstage being made up, by a blonde makr up artist.

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.

A cartoon of Mik talking to a woman standing next to him

Before I go, this is the cartoon of me from the BBC art department. Cool huh?

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My P.I.P. Diary – The Saga Begins

This the first in a series of diaries charting my journey as I am assessed for the new Personal Independence Payment.

A negative image of a letter from the DWP, informing of a PIP reassessmentIn 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

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Accessible Tourism Films

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.

 

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Cybernetics – I explore the Could, Should and Would of the World of Tech

Photo of the 70's toy Six Million Dollar Man

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.

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