My PIP Diary Part Two – The Battle Through Paperwork Mountain

Posted on April 10, 2017 by Mik Scarlet

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

My P.I.P. Diary – The Saga Begins

Posted on April 7, 2017 by Mik Scarlet

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

Huffington Round Up

Posted on February 26, 2016 by Mik Scarlet

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!

#2fingersto2pounds Twitter Campaign!

Posted on October 21, 2014 by Mik Scarlet

Mik tells Lord Freud exactly what he thinks of his comments!

Unless you’ve been hiding under a stone, or just don’t own a TV, radio or computer, you must know about the government welfare minister Lord Freud and his recent comments about some disabled people not being worth the National Minimum Wage. In response to this Shape Arts have started a Twitter campaign called #2fingersto2pounds, and I wholeheartedly support it. So here is my contribution, which I created using Photoshop. I only say that as it is another skill that I would charge considerably more for per hour than the NMW, let alone the £2 per hour that Lord Freud stated could be paid to some disabled people.

I also wrote a column in the Huffington Post which has been setting Twitter alight it seems. Always nice when something you write is so well received. Here is a transcript of it…

How It Feels To Be Worth Less

On the day that the Labour party are calling for Lord Freud to either resign or be sacked, and when the campaigning groups DPAC and Occupy are holding a rally asking for the same in central London, a rally that ironically I cannot attend as I am working, I felt I needed to write something about the whole affair. At first I found myself writing just about the events of last week but I expect that if you don’t know them then you won’t really care about the ramblings of one wheelchair using writer, so instead I will try to explain how I have been left feeling and what I see as the truth is behind the headlines.

I should explain that I have experienced the attitude that my work is worth less than non-disabled people in my own professional career. Back in the late 1980s I broke into the television industry as a presenter. Very soon I was being hailed as the first of a new generation of disabled talent that was highlighting how forward thinking the industry was, and by the early 1990s I had been hired to front a TV series for Channel 4. My wages did not turn out to be anywhere near as huge as I expected, and I put this down to the media hyping how much TV personalities got paid. To a working class boy from Luton my wages were great, as I was bringing home three times the pay packet my father earned at his job in a factory. The series was a smash hit, acclaimed all over the world and even won an Emmy, with my input being hailed as one of the reason for this award by the committee who voted for our little show. Everyone involved was over the moon. At a party to celebrate a Channel 4 exec let slip how much the show’s director was being given as a bonus for each of the shows in the series. It worked out that I was being paid 0.1% of this bonus. So the next time I met with the production company I raised the issue of a raise in my fee, and was promptly let go. The very next show I worked on I was paid four times as much per day and I earned per week on the award winning show, and the company involved in that show told me that even this was cheap. So I had basically been screwed and while it could be laid at the feet of my useless agent, I am sure it is also because there has always been at attitude that disabled people are worth less.

My good friend actor and presenter Julie Fernandez, the first disabled actor to play a long term character in a UK soap, also had this experience but her’s was far more blunt. She also discovered she was on a lesser rate when working on a TV drama. When she raised the issue she was told, “well you are lucky to be in work”. So no raise for Julie either then! In fact, I know for a fact that since I was hailed as the next big thing on the disabled star front there have been at least three more such fledgling disabled celebs. All of them also tell stories of their star falling as soon as they began asking for the usual level of pay a non-disabled person might receive.

I had hoped that this attitude had died out in 21st Century Britain, but the last week has proved this not the case. While this really did sadden me, it was the fact that as I added my voice to the #2fingersto2pounds Twitter campaign started by Shape Arts I began receiving tweets from disabled people in support of Lord Freud that broke my heart. I read each of them with a growing sense of sadness. I know that many parents of disabled children might think they understand what is means to be disabled, sadly a large number of them cannot shake the impression that disability equals being worth less. It always cuts me to the core when I see that concept has rubbed off on their children. Society has always made us feel lesser and excluded, but our parents should give us the tools to know this isn’t true. My Mother raised me to not only feel equal to my “able boded” school mates but to know I was superior, as I fought and won many battles that they could never even imagine let alone triumph over. It might sound rough blaming the feelings of inferiority of many disabled people on their parents, but remember this whole affair began after one such parent asked Lord Freud a question about paying learning disabled people less than the National Minimum Wage.

Disabled people must not believe that taking less than the NMW will give them a “step up on the ladder”, as expressed by @BhalaSadaBlog in one twitter discussion. Instead it will turn us all into cheap labour, and if we ever dare to ask for what we are worth, even after we have proved ourselves by working to the highest of standards, we will be let go and replaced with another younger disabled person also keen to grab that first step. This £2/hour approach will also devalue all disabled workers, as why pay full whack for a disabled employee when you can get one of the same for so much less? We must not believe what we are told by nearly everyone around us. We are not lessened due to our impairments, we are as good (if not better) than those who have yet to experience disability. Our labour is worth just the same as anyone else’s. Don’t let society carve into to stone what we know to be wrong by allowing this opinion to go unchallenged. So if you agree with me, join the campaign and stick up #2fingersto2pounds.

Huffington Frenzy and other stories.

Posted on September 18, 2014 by Mik Scarlet

Chained to my desk

I have been a busy boy recently.

As August drew to a close, I found myself reflecting on what it means to be getting old. I had just celebrated my 49th birthday, and as my parents were told I wouldn’t make it past the age of 5 the fact that I am nearly 50 really hit home. So I wrote it all down in a piece called Aren’t You Lucky? or Another Birthday, Another Miracle.

Something that I really enjoyed was reviewing some of the shows put on as part of the Unlimited Festival at London’s Southbank at the start of September. In case you missed them here they are;

The Dinner Party Revisited – Katherine Araniello’s fun filled anarchic video performance show.

Guide Gods – Claire Cunningham’s exploration of religion and disability using dance, music and spoken word.

Let Me Stay – Julie McNamara’s one woman show about her Mother and the impact that Dementia has had on her the wider family.

I’ve also written a round up review for PosAbility magazine, that will be in the next issue.

My monthly column in Disability Now covered a recent trip to sunny Margate, and I had another arts review published on the Huffington about the wonderful Penny Pepper’s show Lost In Spaces.

Just as I thought it was time to focus on a series I am currently writing on the topic of bionics (perfect for someone who dreamed of being the Six Million Dollar Man as a child) I found that I had to put finger to key board in reply to an article in The Guardian called “Don’ts aren’t working: Here’s five things you can say to someone with a disability” as I so disagreed with it. As I run training sessions which revolve around techniques for both discussing disability and how to talk to disabled people I thought the piece was troublesome to say the least and so I gave my views on the issue in Cute… But Wrong!

On top of that I carried out some training for Network Rail up in York, and shall be back in October.

Phew, it’s been a busy few weeks. But there can be no rest for the freelancer, and so I shall leave you and get back to work!

Out of Hospital & Better Than Ever!

Posted on July 5, 2014 by Mik Scarlet

Sorry for the radio silence but to be honest I’ve been crazy busy since coming out of hospital.

Luckily everything went well with my surgery and my scar is healing so quickly it already is hard to see. Nice! As part of my recovery I have had to stay in my wheelchair for ever longer periods, and so Diane and I have been going out enjoying the weather. This means I haven’t been focusing on work so much. I should say this is also because my injury was caused by working so hard, so I did find going back to work a little off putting.

Having said that my time in hospital did lead me to write two articles for the Huffington Post, both on the subject of Assisted Suicide. Very current with all that is going on recent;y and as anyone who reads my stuff will know, something I am passionate about. I hope you’ll take the time to read my articles as I think they raise important issues on the subject and give an insight that can often be overlooked in a debate fueled by emotion and fear.

So the first is called When “No” Means “Yes” For “Your Own Good” in the political section of the Huffington. It explores my views on my fears around some of the medical profession’s attitude towards sick and disabled people and how they might impact on the concept of allwing them to assist those very people to die.

Then I had Assisted to Die or to Live? in the Lifestyle section. This article stemmed from the other disabled people I met in hospital who I feel had not been helped to cope with their new abilities. They were mostly depressed about being disabled. I asked if more focus should not be placed on helping people like them to live happier fulfilling lives and not on helping them end their lives?

I am back to work finally and there should be more to tell you about soon. Next week I am working on a music project with Drake Music, and I even get to sing. Can’t wait. as soon as the project goes live all info will be here!

Right, off to do my vocal exercises.. Meeemeee. Mooomoooo. (Poor neighbours eh?)