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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Huffington Round Up

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!

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Wright Stuff – Tastic!

I did it! I went on The Wright Stuff! A show I’ve watched since it started way back when almost every day, and I’ve been in it! OK Mik, calm down dear. In fact way back when the show first stated I was in talks to come on, but as  I was very ill with an undiagnosed spinal injury at the time so couldn’t make it. Since then I have watched jealously as different people appeared on the show, but now I am one of those faces who got the chance to air their views on the news of the day!

Mik holding up a Wright Stuff mug with panel members behind him

It went really well and allowed me to explain both my views on many of the issues facing disabled people today but highlight the Scope campaign End The Awkward, which I have written several blogs for and appeared in a couple of short films. More than that, I then proved that disabled people are more than their disability by having opinions on other subjects! Yes, I know.

Mik with the Wright Stuff panelIt was  real honour to appear on the show, especially with the panel of the amazing columnist Yasmin Alibhai-Brown and poet Murray Lachlan-Young, who I worked with oh so long ago on Wham, Bam, Strawberry Jam. Matthew Wright is such a professional, as he was fighting a real pig of a cold, and he was a real joy to work with. Watching him work makes it look easy, but trust me his job is one of the hardest in TV. Live, every day, chatting with the public? All he needs is a load of kids and animals to put the cherry on the tough job cake. Of course I’d love to give it a try, hint hint! (If you ever need a stand, or sit, in Matthew I’m in!)

Mik Scarlet wit Matthew WrightYou can watch the show until Monday on Demand 5 here, with a little taster clip being found here

All I hope now is that they ask me back. Hint, hint… again!

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The Wright Stuff

The Wright Stuff LogoOMG! This Monday, November 2nd, I will be appearing on Channel 5’s The Wright Stuff as a panelist. Debating the stories of the day hosted by the amazing Matthew Wright, I have wanted to appear on this show ever since it started. During the first series I was in discussion with the production company but sadly I was too ill to make it when they wanted me. It later transpired I had broken my back again, so it was a good excuse. Anyway, I then underwent loads of treatment, my career did a tumble and ended up healthy but no longer well known enough to go on the show. Boo! I’m not sure I’m anywhere near the level of fame I was back then, but whatever the reason I am going on The Wright Stuff. (Mik now does a little dance). So tune in from 9.15am to 11.10am on Monday and see what happens! If you can’t see it in person then Channel 5 on demand or Sky+ it. Can’t wait! Wish me luck!

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Barcelona…. Here We Come!

Mik at Derby Feste 2015Wow, what a month this has been. After spending an amazing weekend up in Derby enjoying their arts festival Derby Feste, it was off up to Stockton on Tees, to perform in Pauline Heath’s ground breaking play Occupation. I joined a truly talented ensemble cast and played to a packed house, as we challenged many stereotypes around disability trotted out by today’s right wing media. It was a joy to be a part of and has rekindled my love of stage acting. I want to do more!

Cast of Occupation

While rehearsing I was contacted by ITV’s This Morning to take part in one of their debates. So after a hard day’s fighting with my script I jumped on a train and shot off back to London. Then it was up early to appear on This Morning, meeting Phillip Schofield again after decades, to debate why non-disabled people park in Blue Badge bays. It wasn’t the hardest debate I taken part in to be honest, but it is a subject that needs airing. Especially if people really feel the other person on the sofa… speechless!

In the This Morning studio

Then back to Stockton for play time, with Occupation going live. The audience loved it, and I must admit I’ve fallen in love with the North East. Lovely place, lovely people. I will be back soon. Of course, I said this was a busy month, and so no sooner did I return to Camden and the wonderful Diane than I was up at 4am to shoot off to Sky News, for their Sunrise program. Yes, it was new review time again and I was on with Anne Diamond. I get so starstruck when I’m on with Anne, and she is one of the loveliest people in TV. But the Sky studio is a great set, and Stephen Doxon and Gillian Joseph are great too, so it’s a job I don’t mind getting up at stupid o’clock for. Even if I am a pinko liberal that annoys many Sky viewers…. or that’s how it seem thanks to Twitter!

Mik with Anne Diamond

With that all in the bag, you’d think it might be time for a rest… but no. Or no then yes. On Wednesday Diane and I jet off to Barcelona as I have been commissioned to write a story about the city. Of course as it is one of our favourite places on the planet, we have booked some extra time there for a holiday. Can’t wait, even if the weather forecast is for rain. Being wet in Barcelona is still fantastic. Then when we get back it’s off to London’s Forum for three nights of Gary Numan as he recreates his three hit LP’s from the 80s. I’m going to be in synth heaven!

During all this I recorded a voice over for a film I am in, but I can’t say too much about that. Top secret and all that!

Gonna need a rest in November… although it is our 10th wedding anniversary so better get planning eh?

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