DaDa Fest - Working Lives - Here and There Press Release

5/21/2014 09:56:00 am BenefitScroungingScum 3 Comments

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


Easy News Shortlisted For The Charity Awards 2014

5/06/2014 05:18:00 pm BenefitScroungingScum 1 Comments

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”.


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

5/01/2014 11:06:00 am BenefitScroungingScum 10 Comments

"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.