Friday, May 01, 2015

Bloody Skegness! Blogging Against Disablism Day #BADD2015

When I was a young adult..

At first I was fairly scared, because I didn’t know what I wanted to do because I couldn’t read or write. My special school didn’t teach me to read and write, they only found out I was dyslexic 2 weeks before I left school. I be honest, I didn’t know what I wanted to do when I left school, because nobody ever asked me what I wanted to do. The only thing I could do was retail work.

I went to college first and I didn’t enjoy it because I couldn’t understand things right because of my reading and writing. Then I went on a YTS scheme and they put me on a retail course, it was very difficult to do it. I didn’t have proper support for my reading and writing. I felt very down a lot because I didn’t know what job I wanted, no-one ever asked me, no career day, none of that. I didn’t know what I wanted to do. It got more clear when I was older, when I started living at Keyring. Before that I lived with my brother for quite a long time. At first it was ok, but over time he took over everything like bills, he even banned me from my own kitchen in case I burnt something! He did all the cleaning and cooking. I didn’t like that and I wanted to do it. It made me feel frustrated and angry to not be able to look after myself. My brother worried I’d lose my money or spend and not have any left to pay the bills. I would never do that, but he didn’t have the confidence with me to know that and it was very frustrating. Me and my brother was arguing a lot about, I wanted to live on me own and an advocacy organisation called ROP told me about Keyring. I wanted to live on my own and to learn to be properly independent without anyone taking over for me.

When I was about 30 I started to be able to dream of a life like the one I have now…

At first living on my own was fairly scary. I had a great support worker – he helped me to do an action plan to work towards what I wanted to do, like budgeting my money, going shopping, going to the bank and other everyday normal things. My support worker and other managers in the network would support me at the time I moved in, but over the years I got used to it bit by bit. It was tough at first but bit by bit the support worker, the manager and my mother and my friends helped me to be the person I am now.

The hardest part was…

People’s attitudes. Some of my family were worried I couldn’t do it, because before I couldn’t live on my own, have a proper job or kids. Now I live on my own, I work and I see my daughter.

If you want to live independently…

Have faith in yourself, if you get the right support like I did it can be done. The best people to support you are people like myself who have been through what you have. People with learning disabilities can be very good support workers; I supported children to go to the bank, they wanted to open their account but they were scared. I did an action plan with them to build their confidence up. They couldn’t do it overnight but I supported them step by step and now they help other people with learning disabilities to learn the skills they want to. I didn’t know how to put plugs together, one of the gentlemen I supported taught me to put a plug together. Everyone has got skills, but often they don’t realise they’ve got them.

When I was young, when I was living with family and having to do a course without support, I never dreamed that one day I would be planning a holiday on my own to Thailand – I would’ve been lucky to get a daytrip to Skegness! I hate that place, its shit. I had to go there a lot – it’s like watching paint dry, bloody Skegness.

By Shaun Webster, supported by Kaliya Franklin 

Monday, February 02, 2015

Lucy Frances Glennon 3/12/1985 - 29/1/2015 @LucyTweeting

“The Daily Mail must hate me. I have (foreign) carers making my sandwiches”

I’d thought most campaigners knew Lucy, even though she’d been too unwell these past few years to write much, but perhaps that is just because, for me, Lucy was such a huge part of campaigning. She was involved with debra UK often attending awareness raising events and meeting all sorts of celebs. Jon Snow and his snazzy tie & sock combo were a big hit, Cameron less so. I could never do justice to the Lucy story about the Prime Minister, Sean Bean and backsides, so I hope one of her other friends will share that. 

(Updated thanks to Kate Spector - Lucy's storify of (not) meeting David Cameron. The photo speaks for itself)

Lucy sat in her wheelchair at a Downing Street event, Sean Bean studiously looking at his nails and Cameron ignoring everyone

In 2009 Lucy set up a group blog to review tech products for accessibility - the reviews we wrote were not extensive, but Lucy managed to bag herself all sorts of free tech which may have been the whole point! She loved food too – that and technology were her two big writing interests.

“Jamie Oliver's remarks about people on benefits eating cheesy chips is unfair. I'm on benefits and I prefer chips with aioli.”

For the first few years I knew Lucy, through blogging and later twitter, that’s what we talked about. We bonded as we both had connective tissue disorders – they had vastly different impacts on our lives, but still all down to fundamentally workshy collagen. We traded advice on technology and pain control.

But then, in 2010 things started to change for Lucy. She was one of the first and most impacted by the Coalition’s welfare ‘reforms’.

Initially I assumed Lucy would be ok. So did Lucy. David Cameron made many promises about protecting the most vulnerable. And there was no arguing that lovely, clever, tough little Lucy was that.

When the government changed and immediately announced sweeping cuts to social security, Lucy was one of the first people to get involved with The Broken of Britain and later the Spartacus report. Living in Camden she was able to attend The Hardest Hit marches in person, nag all her journalist contacts and wrote as many articles as she could.

Disability and welfare campaigning have become a powerful movement in the last couple of years, but earlier in the parliament there was just a small group of people desperately trying to get the message out and all too aware that not all of that few were guaranteed to live long enough to see the next election.

Lucy was one of those I worried about most. People with Recessive Dystrophic Epidermolysis Bullosa die so very young and that made Lucy’s situation so much more urgent. She didn't have the luxury of years to wait for things to improve.

There are two stories of Lucy’s to be told; the strong young woman with a naughty sense of humour who faced life full on with an awesome dignity, and  the terrified girl who feared losing the independence and life she fought so hard to gain. I have agonised over whether it was right to tell that second story here. But Lucy wanted to tell her story, it became the focus of her writing both in the articles she published on The Guardian and the emails she sent. If I am honest, what Lucy went through drove much of my campaigning. She was one of the first to be impacted by the government’s housing changes and it made it very clear that whatever promises had been made, the government had no real intention of protecting the most vulnerable. How could they when they were doing this to Lucy?

Lucy hated the whole butterfly thing and she was right to. Although its an understandable analogy that people with EB are sometimes referred to as ‘butterfly babies’, their skin and internal tissues being more fragile than a butterfly’s wings, its schmaltzy and Lucy was never that. Witty, cheeky, and the sweetest character, but never schmaltzy. She was more like a little wave, her incredible force of strength hidden under the surface so all you see is sunlight glinting as it ripples across a pond, changing everything and everyone she came into contact with for the better.

EB is a uniquely painful and cruel condition. The skin and internal organs are so fragile that even a light knock or bump can cause terrible trauma. Morphine is required for things like nappy changes and parents are unable to indulge their natural instincts to hold their babies as close as they want when they scream with pain because it can damage them.

It was typical Lucy that she referred to the fentanyl suckers prescribed for pain as her ‘crack lollies’. For a while during 2010 and 2011 they helped keep the worst of the pain at bay and Lucy poured her characteristic determination and passion into writing, calling out politicians for an increasingly common bullying attitude towards those on disability benefits.

But what not as many people knew was the extent to which Lucy’s life had been thrown into turmoil, fear and confusion by the changes to housing benefit. Although she became entitled to a two bedroom rate, once the rate reductions had taken effect that was less money each week than she had previously received for the one bedroom rate and Lucy knew she had to move. Leaving central London wasn’t an option, Camden was ideal for her to reach St Thomas’s hospital quickly. It was also vital for her Dad Ted, as it meant he could get from the family home in Rotherham to Lucy in not much more than 90 minutes. She couldn’t move to a cheaper suburb an hour or so away, that was too far from the hospital she needed and too long for her Dad to reach her when she needed him.

Around the same time she had to reapply for Disability Living Allowance, the DWP lost her first set of forms and she didn’t know where she was going to live. This was all in 2011 and the wider understanding of the impact of these cuts, in particular how to deal with them on the frontline, was not really off the ground. But for Lucy, and those of us frantically trying to find a way to help her, the impact was all too obvious.

Lucy wrote this to David Cameron as part of a campaign on the 17th September 2011.

“I have never felt lower.
Because of changes to housing benefit, I've been reduced to a worrying mess. I face the possibility of being moved out of my flat that has an extra room for when I need a carer because the local housing allowance is dropping so much.

I'm entitled to a two-bedroom rate of housing benefit, but it's dropping so much, it will be lower than the one-bedroom rate I'm currently on.

I'm too severely disabled to work. I cannot walk far, my condition is extremely painful, and I face unpredictable fluctuations in my disability where one day I may be unable to swallow properly, be able to get onto my feet, or even see properly. It is difficult enough to look after myself on a day to day basis, yet you are making it harder.

I receive DLA, Income Support and even Severe Disablement Allowance. Yet despite being acknowledged as one of the most deserving recipients of housing benefit, the office who deal with my benefit do not understand why I am to be one of the worst off, with no exception.

This morning I listed ten items to sell on eBay. These were presents I received last Christmas and on my last birthday. The items I am selling are two well made winter jumpers, some DVDs of films I enjoy, and three handbags (from high-street stores). I am looking around for other things to sell, as times are hard enough without the impending drop in housing benefit. I don't have anything of big value I can sell, and although I love the clothes and watching the DVDs I am selling, I have nothing else nice that anyone else would want

You and George Osborne said you would not leave the infirm without help. Well you've let me down, and many others too. You have gone back on your word, and you are no man of honour.”

As always Lucy put it perfectly. Where is the honour in promising to protect the most vulnerable, a promise Lucy had understandably thought would apply to her, when it was clearly a lie? A lie that led to a beautiful young woman in the last few years of life feeling so afraid about how she would pay her rent that she listed her Christmas presents on eBay.

Quietly, behind scenes, people rallied to help. Not the politicians who made those false promises, but others. In typical Lucy style she described her MP as

“like a nice old bloke (a bit like the other Attenborough brother who does the acting). He wore a cuddly blue jumper too (I didn't cuddle him).”

We got her into a trial housing advice project being run in by neighbouring constituency, her case was raised in the House of Commons, huge amounts of medical evidence were collected, checked and checked again. Lucy’s condition spoke for itself, but still we got it all reviewed by an Atos assessor to make sure it spoke the language of the DWP.

Eventually the housing situation was patched together, her DLA approved and Lucy moved to a more accessible flat where she could still access the beautiful Bloomsbury squares she loved in her powerchair. But that fear and anxiety ruined a whole year for her, a year just as she was becoming ever more frail, a year she didn’t have spare to be spoiled.

What happened to Lucy is as much a story of how life changed for disabled people during the 2010-2015 Conservative/Liberal Democrat government as it is a story of a remarkable young woman who in her all too short time here demonstrated huge honour and dignity in everything she did.

I’ll never forgive the damage this government did to Lucy – not so much the problems with her housing, or money shortages, but the brutal lesson they taught her about value, worth and honour.

But I’ll remember Lucy, as she was the last time I saw her – speeding through the Brunswick Centre in her powerchair, too fast to catch up to, as she would have described it 'flying like a squirrel on wheels', crack lolly in situ, shouting ‘go faster you piece of shit’.

Photo Credit - Sarah Lee, The Guardian. Photo is of Lucy Glennon a young woman with pale skin, dark hair, glasses and big blue/grey eyes

“I can confirm it's not possible to twerk in a wheelchair. It looks more like you have an itchy backside. You're welcome.

Monday, January 19, 2015

Gary's blog about working together and being off sick

I have just read Kaliya’s blog, I really do feel for her,  as well as a colleague she is also a friend and work wise we get on like Bread and Butter.

I know about being of sick in the past when I regularly had epilepsy and discolating and fracturing my shoulder and had to have to off for six weeks, the jobs I had no flexi-hours. I was sometimes stayed in hospital until I got better I also had district  nurses to clean me as I could not wash myself.

People might say it’s un fair to have more sick days off or even unlimited time off for being sick, because it’s not equal opportunities. I would say it’s just un fair for not having more sick time off or unlimited time off, we cannot help with our disability.

I am a proud person with disabilities as well as having epilepsy I have a learning disability, mild autism even though I might not of being tested for this ( I went to an Autistic School in the late 60’s) I also get anxiety problems when things go wrong or filling  in forms. I have had epilepsy since the age of 3, I still think people still not understand it. I usually get epilepsy if I am over tired, but I always think there is not enough days in a week.

I am a bit of a workaholic, do not just ask me, ask Kaliya as well, she tells me I am doing to much. I do have a great supporter in Michelle who helps me with my work, she is a friend to me as well, she helps me with anything complicated like form filling in, diarizing and travel ect.

I have got a great team of people from Housing and Support Alliance, I do not know what I do with out them and my network of people I have known for years, and finally my family who can tell what is being happen with in my job which I love doing and discussing the year ahead with Kaliya, I do not make decisions without her, we are a team.  

Tuesday, January 13, 2015

On working. And sleeping. Mostly sleeping..

These days, all I can think about is sleep. When can I go back to bed? How can I fit in a few more hours? The January dark and cold doesn't help, but even on a beautiful sunny morning like today, going back to bed is all I'm looking forward to. I've only been up 20 minutes. 

I've been in work for about 10 months. I think. One of the most difficult challenges at the moment is that I can't think properly. That's fine when it just lasts for a couple of days; but this has been months. More months than I can count without losing track. I know it was October things started to really slide, but my brain won't function sufficiently to work out the months between then and now. 

I did start picking up a bit. But then I went to London for work, the taxi I was travelling in hit a pothole and I ended up stuck in a London hotel room with spinal dislocations and whiplash. Then, well, it's winter. So I got a bug. Then a chest infection. Then the bug just didn't clear. Somewhere in all the middle of that it was Christmas and New Year. Apart from a brief few hours with family, they went pretty unremarked. Mostly because of the 'when can I sleep again' thing. Did I mention the sleep thing? 

The narrative surrounding work is that its good for you, good for your health even. I'd like to believe that. I'm sure its true for many people. Work has definitely been good for my mental health. I absolutely love my job. Working with Gary Bourlet and the other self advocates we've supported is a pleasure and enormous privilege. It gets results too. One of Gary and Shaun's ideas was warmly received by the Employment Minister who is looking into possibilities of making it work. 

So yes, the job is great. My colleagues are fantastic. I'm employed on an incredibly flexible set up. I can't imagine a better employer. In theory I have the freedom to work whenever I want, so long as I get my 16 hours a week done. And of course I don't have to do them all in the one week. But the convoluted tax credits vs means test benefits rules mean I can't reduce them to say, 10 hours a week. Then I'd have to go back onto ESA. And then apply for permitted work. Politicians talk alot about how Universal Credit will be the answer to all this. But then Universal Credit functions about as well as my spine. So I shan't hold my breath. 

Which was all ok. But then it was summer and I had a bit more energy. And the upper spinal dislocations weren't quite as bad at that point. But they are now. Just holding my own head up is hard work. I've seen babies with better head control than I've got. And after months of failing to be able to find the right words, to not be able to write, or to even think coherently..they're sort of coming back. A bit. 

And as it turned out, there are certain types of brain damage that go hand in hand with the kind of spinal trauma I'm regularly experiencing. So having wandered around muttering "I've got brain damage" for months might've been more accurate than I'd thought. 

When I tell people how hard this is, how at the moment all that's keeping me going is the thought that if it all gets too bad I can go back on ESA, but that I really do love my job. They say that's sad. 

But they don't really understand. Not any of the work is good for you people. How can anyone possibly understand what this is like without being in a similar situation. Or how, even with the most supportive employer in the world, how the pressure just increases as you fall further behind the tasks you need to do, but your brain just will not work sufficiently to order or achieve anything. My employers don't put any pressure on me. But its there. Inside me. And there is an election on the way. That sort of imposes another timetable on everything.

Because we all want to believe that work is good for people. And in lots of cases it is. Apart from when it isn't. Even when I'm doing well and feeling ok, I'm managing work by not wasting spoons on anything else. Including washing and dressing. I am not convinced that is good for me. Its certainly not good for the people around me. But given I'm so exhausted I don't want to see, speak to or do anything, the dodgy smell is less of an issue than it could be. 

There's alot of talk amongst disabled campaigners about moving from the Support Group to work. The holy grail for everyone is 'flexible working'. I know, I spent years believing that if I could just get the right job, with the right set up, then working would be possible. 

And it sort of is. So long as I do absolutely nothing else in my life. So long as I use my 4 or so functional hours each day on nothing but work. This weekend, thinking I was getting better I went out for a few daytime hours. It was the first time since the London whiplash incident. The outside felt jarring, surreal. I went to a meeting, which if I'm honest was more work than not work, then went to bed. The next day I met an old friend for coffee. Then I went to bed. Then I started projectile vomiting. And it didn't stop. Splatter pattern ratings were assigned. As ever, when vomiting, the force pulled at my spine. All the good work my physio had done two days before was undone. 

Spoonydoc has written this excellent piece in response to the current discussion about moving straight from the support group to full time work. It really is excellent, so do read it. But I can't remember the point I was trying to make anymore. I've been writing for 20 minutes or so, and awake for an hour. I'm so tired nothing will keep straight in my head. I need to go back to bed. But I also really do need to use some spoons on getting clean. The post vomit smell is bad enough for a day. Beyond that, its beyond rank. 

But showering takes energy. Energy I simply don't have. 

What I need is just to turn everything off. For months. To sleep as much as I need, to focus on the routine of getting washed. At least more days than not getting washed. To eat well, to spend time on physio. To try and find some form of exercises that will assist my feckless, workshy neck muscles to remember why they exist and hold my bloody head up for me. 

But that's the key difference between paid work and being on an incapacity type benefit. Even if you're doing lots of voluntary work..voluntary is just that. When you need to focus on your health more than anything for an undefined period...well, you can. You have an income to allow you to do so. Sure, its not much, but unless you've also got an enormous debt, it is usually enough to keep a roof over your head, have enough to eat and pay the bills. 

Other people tell me this is really sad. I already know that. I live it. I live with the sadness of never having the energy to do anything. Of knowing that I'm constantly irritable and unpleasant to be around. With the fear that what I'm doing to my body will ultimately result in a spinal dislocation so severe the cognitive impairments it causes will never go. That the voice loss won't come back. Oh and the quadriplegia risk. 

I love my job. I quite like working really. Or I think I do when I'm not so exhausted. I certainly love the work Gary and I do. I must do. I don't do anything else. 

But please, don't make the mistake of thinking that this is easy. Or that work really is good for everyone's health, we just need to think of work differently. Because frankly, that just isn't reality for some of us. 

There was probably meant to be some sort of concluding thought to this. But I can't remember it. And I need to go back to bed. 

Wednesday, May 21, 2014

DaDa Fest - Working Lives - Here and There Press Release

Next month as part of the annual DaDa fest in Liverpool there is a photography exhibition of disabled people's working lives, including a photo of yours truly taken by Adam Lee. Details of the exhibition below

DaDaFest - Working Lives - Here and There Press Release

Tuesday, May 06, 2014

Easy News Shortlisted For The Charity Awards 2014

Campaigning can be really tough, and often it can feel like we're not making the progress we would hope, especially in an age of austerity. So I'm really excited and thrilled that a project which we started with just a simple question has been shortlisted for The Charity Awards 2014. Congratulations to everyone involved in Easy News, especially to the consultants who write the paper, but also to United Response for being willing to take a chance on a new idea and work in a new way to make the paper such a success

You can download the latest edition of Easy News here for free! 

Improving access to news for people with learning disabilities

United-Response-500pxOne of United Response’s most passionate beliefs is that people with learning disabilities should be equal participants in society. However, it had previously discovered that far fewer vote in elections than the general population.

While the charity’s Every Vote Counts campaign succeeded in persuading the main political parties to produce easy-read manifestos, it realised that an accessible source of news was needed all the time for these votes to be meaningful. A baseline survey revealed that just 11 per cent of the charity’s clients regularly read a newspaper and that they did not generally feel informed about current affairs.

A lightbulb moment came in 2011 when disability activist Kaliya Franklin quizzed Ed Miliband at the Labour party conference and asked United Response to create an accessible news report about it. This was made available through social media and Kaliya and United Response began planning a regular accessible newspaper, Easy News. Funding was secured from the Big Lottery Fund for a six-edition pilot.

Easy News exceeded United Response’s expectations with 90 per cent of respondents to a survey saying it was easier to understand than other news sources while 78 per cent felt that politics was now relevant to their lives, compared to 31 per cent a year before.  By the sixth edition, 3,272 people had downloaded it – 250 per cent over target.

Additionally Easy News created work for more than 30 people with learning disabilities, while anecdotal feedback included one mother saying that a story about Winterbourne View “promoted a bit of a discussion with my son; a rare occurrence as he is not very talkative”.

This year, Easy News is being funded out of the charity’s legacy funds while a sustainable funding model is devised – probably involving advertising.

Charity Awards judge Danielle Walker Palmour said: “Easy News is a new thing in the world and it is rare to see something genuinely new.”  Richard Hawkes described it as a “really good concept”.

Thursday, May 01, 2014

Hard Working Species, The 'Striver Scrounger' #BADD2014 Blogging Against Disablism Day 2014

"I never thought I would hear you say that, I'm so proud of you" was LovelyCarer's (slightly teary) comment last week when she overheard me saying that I couldn't wait to go on holiday to have a break from work. Today is May Day, International Worker's Day and of course, the 9th annual Blogging Against Disablism Day hosted by Diary of A Goldfish. It's the 8th BADD I've taken part in, and reading back through my old blogs I was reminded of how much has changed over the past decade - coming to terms with disability, learning to life a life with disability that is full and rewarding, the removal of the security part of social support and just recently, starting my first paid employment since 2003.

It's been quite a journey! Whatever the politicians may say about not letting people fall out of the workplace, or that unemployment is bad for your health, for me, without that ten years of secure support I would never have managed to learn to live with my disability, let alone consider volunteering or working. The first few years I was in shock, then there were the years I had to learn to become an expert in Ehlers Danlos Syndrome, and all the associated skills needed to manage an unpredictable, rare condition. In 2007 I started blogging as a way of reaching out to other disabled people in similar situations. In the back of my mind was always the vague idea that blogging would be a good way of discovering whether I had any talent as a writer, that maybe it might lead somewhere, but it was a fun and interesting hobby which helped with being so isolated. Gradually I started to learn more about disability, about communication and became more interested in the emerging social media platforms. Somehow, without really realising I developed expertise about disability rights, how to use the political process and various media tactics.

Then, last year there was a profound change in my life. After a 14 month battle with the local authority I finally received a direct payments package sufficient to meet my needs and was able to employ a PA. Suddenly instead of spending every day with my primary focus being how to manage to eat, having a PA to support me meant being able to raise my ambitions. I can't overstate the importance social care has played in this, without it I would be straight back to putting all my time and energy into managing the most basic needs, and all the progress I've made, including employment, would be lost. The nagging fear that eligibility criteria will change, or further cuts to social care will mean a reduction in support never quite goes away, coupled with the certainty that should that happen, I will also be unable to work.

It's almost two months now since I started work as co-development lead for People First England. Enough time to have struggled through the financial implications of leaving benefits and waiting for wages and tax credits to begin. It's also been a 'too close for comfort' insight into why the use of food banks is increasing - politicians simply do not understand how, for people on very low incomes, just a week without income can plunge them into a downward spiral of debt and desperation, or how massive a barrier to starting work that can be.

I'm incredibly lucky, I have supportive friends around me who are in a position to be able to lend me money, but it is still humiliating to ask, and a pressure on friendships. I'm even more lucky to have the employer I do, as if I were working in a typical environment the challenges I've faced would have meant losing that employment as soon as I'd gained it.

I have that 'holy grail' of 'spoonie' jobs - I work from home, part time at hours to suit me. I'm supported by my employers to work remotely using Skype to attend meetings or conferences and to keep travel to the minimum. Even more than that, I have employers who remind me that if I'm not well and need 3 days or 3 weeks in bed, then all I have to do is let them know before turning everything off and going to bed.

I have employers willing to help me through the Access to Work process, which I applied for in early January and is still not sorted. Most of the equipment is now with me, and some of it even, sort of, works. However, I don't have any PA hours to support work, have no idea when or if Access to Work will ever grant those and I'm not allowed to use my social care budget for work. Social care is for social care, Access to Work is for work and apparently never the twain shall meet. Which is not overly practical when I need a PA with me at work events to do things like open doors for me, because they are social care not employment needs. Apparently the work PA (if I ever get one) is supposed to not open doors, or assist with getting me food but just be there for 'work' stuff. Stupid is as stupid does.

Access to Work is a fantastic scheme, but it is not operating as well as it could and should given that it is the only government project for which the treasury receives back £1.48 for every £1.00 spent. Huge delays in support arriving are incompatible with the realities of employment and employer needs. It is simply not reasonable to expect employers to cope with lengthy delay before someone can start work, especially within a national 'skivers' narrative and hugely competitive employment process.

I'm also not 'off benefits', I've just been re-classified as a hard working striver scrounger, which is a species of the scrounger genus never mentioned by politicians. I receive almost as much in benefits now, made up of Tax Credits and Local Housing Allowance as I did when I was out of work. However, as I also get a salary and have survived the debt and stress of the transition process I am much better off financially. This wouldn't be the case if I had had to access expensive credit from a payday loan company which most people have to do during that change-over as I would have been plunged into a debt/repayment cycle lasting months. Due to the limitations in hours I can manage to work for health reasons, even with a good pro-rata salary I cannot earn enough to support myself without those additional benefits.

I also have a job I absolutely love, which is an enormous privilege. This counters the fear that I'll never again find such an accomodating employer, and increases the pressure I feel to stay in work.

Because what isn't discussed by politicians, or the huge welfare to work industry, is that even with the right attitudes and the right support, managing to maintain employment with a fluctuating and significantly disabling condition which also causes pain, fatigue and illness is like walking a knife edge whilst juggling. There's always the risk that one of the balls will drop, and in the process cause injuries taking months or years to recover from. There will always be a lucky few who have skills and experience unique enough to make it desirable for employers to accomodate such extreme needs, but for most people and most jobs that simply is not realistic. Would Tesco wait months on end for their new shelf stacker to be able to start work? Could a school who'd employed a disabled teacher manage for a whole term whilst waiting for their support to arrive?

Of course they couldn't. And wouldn't. Why should they? If disabled people are to reach employment rates comparable to the rest of the population then there are huge changes of the kind outlined by the recent Labour taskforce report, Breaking the links between disability and poverty which must be implemented as a matter of urgency. However, as even one of the three major political parties in this country hasn't managed to understand the importance of access and ensure its availability I won't be holding my breath.

I just hope, that the next time I reflect back on a decade in my life, I will be able to say that things really have got better. Not just for a fortunate few, but for all those sick and disabled people who want employment and are well enough to manage to do so.

Friday, April 25, 2014

Actions speak louder than words - Labour publish Poverty & Disability taskforce report

Last June the Labour party announced they had appointed an independent taskforce, led by Sir Bert Massie, to write a report looking at ways to break the links between disability and poverty. The report was published yesterday, without a press release, on Labour's policy submission site. This was a report commissioned and requested by the Labour party, which has been produced by volunteers who have given huge amounts of their time, for free, with the hope of being able to make sensible policy suggestions to improve the lives of disabled people.

As Neil Crowther explains on his blog, publishing the report, during the parliamentary recess, without the promised press coverage tells us that Labour do not want to engage with the suggestions made in the report, presumably because some of the suggestions involve spending additional money. Hardly radical within a report specifically commissioned by Shadow Ministers to break the links between disability and poverty, but clearly too radical for a party terrified of being accused of 'welfare spending' in the run up to the general election next year.

Despite this being a report about disabled people, written by a team led by and including disabled people there is not an easy read version available. I can only apologise profusely for this lack of accessible information for the one million people with learning disabilities who are eligible to vote. We did not forget any of you. An easy read version was requested some weeks ago, and quotes provided to the Labour party. The cost of putting the report recommendations into an easy read format was approximately £250-£300 - hardly in Liam Byrne "there's no money" territory.

The provision of accessible information tells people what an organisation thinks of them. Providing proper accessible information says 'we value you, and its really important to us that you have the same information as everyone'. Not providing that access, especially in a report about disabled people, by disabled people, commissioned to break the links between poverty and disability demonstrates a disdain for those disabled people. These are of course all the same disabled people that Labour would like to vote for them. Actions speak louder than words, and despite what they may try to say through the press or campaigners, the clear message here is that Labour do not have any significant policies to improve the lives of disabled people, and that they are not willing to publicise the report they themselves commissioned to try and find some of these positive policy suggestions.

If you would like to read the report, but require a different access format such as easy read then you need to contact the Labour party directly and request one. The contact details are here

Had there been a press release from the taskforce, this is what we would have said;

 “The taskforce concluded that Britain can and must invest public resources more effectively than at present to create the infrastructure of support that will enable disabled people to escape from and remain resilient to poverty.  This is especially so in these tough economic times when, despite public spending cuts, millions of pounds of public money is being wasted on poorly designed, ineffective and bureaucratic systems such as the Work Capability Assessment, the Work Programme and fragmented public services.  

So we call for real world assessments which focus on people's interaction with the world around them, including the labour market - rather than just on the functional impact of their impairment or health condition. We back the proposals of Disability Rights UK to replace the Work Programme with localised, personalised employment support that places disabled people and employers in the driving seat. We propose an uplift to investment in Access to Work - given the schemes clear returns to the Treasury -and we call for greater integration of employment support, health, social care and education to support people’sparticipation. 

We also explore how disability-related extra costs of living might be reduced, for example through national and local government using its buying power to reduce the costs of aids and equipment and through preventing benefits being swallowed up by social care charges.

We conclude however that disability-related poverty cannot be tackled without further investment in a disability costs benefit. This would take time to develop and implement, but we believe it is a matter of social justice:as disabled people have borne so much of the ‘austerity’spending cuts, despite pre-existing poverty and exclusion, they should be priority beneficiaries of the proceeds of inclusive economic growth.'

Monday, April 07, 2014

Journey to Work Part 5 - How can I claim expenses like Maria?

Today marks the start of my fifth week in work. I think. To be honest it's all a bit tiring and I'm no longer sure. I love my job, but will that be enough? And did I mention the tired?

What I do know for sure is that my benefits stopped on March 10th the day I formally started work. Since then I've applied for tax credits, housing benefit and council tax benefit. There is a four week run on of Local Housing Allowance so that has continued to go into my bank account. But that's it. No tax credits. No letter acknowledging tax credits claim has been received. No wages til later this month. Oh, and no way of talking to anyone at tax credits to check they have got my application, just a recorded message explaining they are taking a minimum of five weeks to process claims and won't talk to claimants until after that time is up.

This is why people end up with payday loans or go to foodbanks. There isn't another way.*

If I make a genuine mistake filling out a benefits application I get fined £50

But if I were a Cabinet Minister, a former Minister for Disabled People, who had pushed through these cuts affecting disabled people and working people...

*Please don't worry - I have friends who are in a position to lend me money until wages and tax credits start properly, I won't have to go to a food bank or payday loan company. But how many people have friends willing and able to lend them hundreds of pounds for an undefined amount of time? 


Wednesday, March 12, 2014

Journey to Work Part 4 - I'm finally off ESA!

After more hours on hold to various DWP departments than I care to think about and several discussions with concerned, expert DWP advisors about whether it would be better for me to do permitted work than full on employment....

I've managed to sign off ESA! Quite why it is such a difficult process is beyond me, the automated systems the DWP are using reduced me to tears, but all the staff I actually spoke to were excellent. This doesn't bode well for the 'digital by default' futureproof benefits planning the DWP are hanging everything on currently.

So having decided I can only face dealing with one benefit department per day, today's task is to try and sort out housing and council tax benefits.

And to try and squash the panic triggered by yesterday's DWP advisor asking me if moving into work was a change of circumstances for DLA. I don't see why it should be given I'm working part time from home in my pyjamas*. But, if that question does trigger the system as a change of circumstances it will also trigger an application for PIP.

There's simply no way I can remain in employment without DLA. There's also no way I can manage to juggle coming off several benefits, applying for several different benefits, deal with the social care implications, actually do my job AND apply for PIP.

So, should this be treated as a change of circumstances and the PIP forms arrive I'll have no choice but go to straight back onto ESA and stop working.

I'd really like to congratulate the government on having spent obscene sums of money on 'welfare reform', terrified disabled people and somehow managed to make it MORE difficult to move into work. As achievements go...that's quite an impressive one..

*frequently smelling of sick, so it's a good job I'm avoiding face to face meetings!