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.


It really would be wonderful if more employers would make the effort like your have, but you are right, for many jobs they just cannot (or will not) be as flexible as those with fluctuating conditions need.

Emma said...

This post really resonated with me. I'm incredibly lucky to live in the most accessible flat (adapted as it was built by the housing association to a spec for a wheelchair user - and the OT who designed the spec did it with my specific needs in mind even though they weren't allowed to specifically allocate it to me as they built it) which means the struggle to do day to day tasks for me does exist but is so much reduced I almost forget about it (in part I think due to being life long disabled). But it's still an energy drain. And because I can mostly do those tasks I can't get social care. Could I work? I don't know. But I do know that I definitely couldn't if I didn't have a care package in place to do those little things like wash my clothes and make me dinner.

Aspects of the programs that are "supporting" you to work sound like the ones that are present in Canada (specifically in Ontario, where I live and work) - they're trying to provide incentive for people on the disability support program to get out and work if they can, but doing so is so risky that people are scared to. And, as you've said, the culture of the workplace in general isn't a good one for people who need some flexibility to accommodate medical needs.

I'm glad that you've found a job that's able to work with you that way - and they're lucky to have you! :)

Anonymous said...

I'm glad to hear it's working out so far. Or at least, I think that's what the translation implies. For some reason Google insists my IP address is Italian and serves everything up via it's Italian servers and translates English posts into Italian. I then have to translate it back. Hmm, sounds like the Government! (I've tried commenting over the past few months, but blogger/Google keeps rejecting me so I'll give it another shot now and see if they Italian branch likes me more!)

Anonymous said...

Well, my comment went through but it's in Italian! :D

It's in English here...perhaps you need a new computer Babel fish?! ;)
Lovely to hear from you again, hope all is well @stonehead?

Thanks for all the comments - its clearly an area where there's a long way to go!

JaneB said...

Sorry to hear Access to Work hasn't gotten any better since I needed to use its equivalent in 2003... but so pleased to hear you've managed to find work you love and value, and that you've ended up better off! Everything crossed that things continue to work out!

I have mental health issues and am prone to stress-related laryngitis. I work as a university lecturer. We are only required by our contracts to be on campus 4 days out of 5, as long as our teaching schedules allow. In order to rest my voice and recoup mental health spoons, I need the day when I'm off campus to be mid-week; five days in a row is often not possible for me, I've learnt. The university will accomodate fixed teaching times for parental requirements (e.g. some colleagues are able to request a schedule that lets them leave by 4 every day to fetch children from school), and for people with large research grants (who can pre-identify 'research days' when they won't teach). However, they have consistently found reasons not to accomodate my health-related request (despite backing from Occupational Health), and I ended up having to switch to a 4-day-a-week contract - with associated pay cut and damage to promotion prospects etc. (promotion criteria such as number of publications are not pro-rated unless you work 50% or less).

At least I've managed to stay in work - at a cost to my health, recovery rate and ability to maintain a private life and look after my house and garden, which may not have been a smart choice - my fear of and awareness of the difficulty of getting BACK into work and of the inadequacies of the benefits system especially for a fluctuating (and for my various physical issues, lacking in a proper single provable diagnosis) condition made that a priority!

misspiggy said...

This only makes me realise again how lucky I am. I've generally had third sector jobs in large agencies which have given advances to cover that gap till the first pay packet; which have increasingly allowed working from home; and which have genuinely tried to make access easier. For these reasons I haven't needed benefits.

None of the adaptations I've received have cost the organisations I've worked for a penny, other than a few weeks' sick leave. Doing things flexibly has been built into the organisations. Because of this flexibility I've been able to develop a career which enables me to pay decent amounts of income tax.

You'd think legislation for carrots and sticks would encourage more employers to do the same. Surely it would be worth government investing in inclusive workplaces rather than punishing and unrealistic ESA assessments, so that people aren't forced out of work in the first place, wherever possible.

You totally put this across so precisely. I have fibromyalgia (my gp's suspecting Ehlers Danlos, I'm not really sure myself) and you explain the struggles I have with work. I haven't worked since 2008 and always struggled in various jobs. Now I'm battling an ESA dispute since 2011. It's ridiculous. I blog to keep myself sane and give me a reason to live and I too hope to have my holy grail job at some point before it's late.