Not idle, just unsupported: my original #disabilityUK #dpulo idea for #benefitscamp

I‘ve had many crises over the past few years which chipped away at my resolve to stay positive and be grateful that things could never get any worse than they were in those moments. Becoming disabled is a challenge I never anticipatedI have followed the discussions of the Welfare Reform Bill in the Commons and now the House of Lords and it has literally driven me to despair. What hope can ordinary people have if a disabled Peer, Baroness Tanni Grey-Thompson, is publicly disrespected and her concerns about the inaccessibility of the chamber summarily dismissed by her esteemed not-yet-disabled colleagues? 

At the very first reading, Baroness Grey-Thompson’s legitimate problems fell on deaf ears and icy hearts and she was given the equivalent of a pat on the head with a platitude that “every accommodation has been made” for her. It was obvious to anyone with a sensitivity chip that she was clearly distressed and unwell. Lord Freud and his supporters were wilfully obstinate – and the Baroness was just going to have to “deal with it”. That attitude sums up both the “discussion” process for me and the situation already being confronted by people with disabilities and invisible illnesses: David Cameron and his ilk are determined to have their way at all costs (which begs the question why even bother to have “discussions”, “reviews” and “consultations” in the first place). The sick and disabled are being bullied into submission by those who refuse to accept that no amount of hounding is going to cure us of disability and illness we have no control over.

The same is also true for those who are otherwise disadvantaged. The hard-working poor and lower-middle class are being punished for the flagrant incompetence of their so-called “tax-paying” betters in the pursuit of more money and a better lifestyle that we are told that we don’t deserve – and the WRB is being gerrymandered in such a way that we most definitely won’t. Anyone who claims benefits, whether by entitlement or need, will  have to live with the consequences. This is unlike comfortably well-off politicians, the millionaire Cabinet in particular, who have themselves claimed disability benefit and tax credits – their generous salaries and parliamentary expenses aside. The dismantling of the welfare system will happen irrespective of which of the main three political parties is in power.

As I have stated before, thecreativecrip.com (and my nom de plume) was borne of the frustration in trying to become self-employed having become disabled and exhausted my redundancy savings. The of aim this project has always been to chronicle my thoughts and experiences as an entrepreneur trying to successfully grow a business despite the limitations of physical, mental and invisible disabilities.  I don’t want to carry on living my life as it is now – becoming disabled and needing benefits is not a lifestyle choice, especially given the not insignificant skills and experience I’ve gained from nearly 25 years working on Wall Street and in The City of London.

The problem lies with the lack of genuine support and resources from government programmes. For me, the Employment Support Allowance Work Related Activity Group has been humiliating & useless. Despite being assessed as having “Limited Capacity to Work”, I was thrown in the power of workfare behemoth A4E – they of “Benefit Busters” infamy.

I found another entity in receipt of government funds, Venture Wales, on my own. They saw me once at home (after a lot of chasing), made promises and then vanished. Still the medical assessments and reviews carry on with me being punished despite pushing myself to do everything that I was ordered to do – and I am not alone.

For example, in a personal account for The Guardian last year, disabled service user Edward Lawrence said,

“Without my welfare rights adviser’s good offices on my behalf I wouldn’t be among the 5% of claimants who are in the protected “support group” of employment support allowance. Those who are instead placed in the “work-related activity group” will now, if they are on the “contributory element” of the benefit, be moved to jobseeker’s allowance (with no specialised assistance and less money, not to mention no available jobs) after one year.”

Commentor LeopardPrint responded with support and said:

“…the government has axed a lot of its funding to the Access to Work Scheme. Previously small businesses were given grants to provide things like wheelchair ramps, specialised computer equipment and adapted chairs for their disabled employees. This is allegedly going to be scrapped. 

These employers cannot afford to make the adaptations themselves, they will not be able to afford to employ disabled people.”

Relatively few organisations are willing, let alone able, to adequately accommodate the needs of those who require a flexible working arrangement. The same is even more true for small business. As the now ex-figurehead behind Management Today’s “Secret Diary of an Entepreneur” said bluntly in May 2011:

“As you may recall, for reasons that I would never admit to publicly, I’m not a massive fan of the whole flexible working thing. I appreciate the arguments in its favour vis-a-vis working women. But frankly, the downsides tend to outweigh the upsides. Or to put it another way, what’s in it for me?

Naturally people tend to like being allowed to work exactly how they want. So they tend to be fairly appreciative when you let them. But invariably, it’s a bit of a pain in the proverbial to manage the whole process, especially when you’re a small company and it’s the exception rather than the norm. And yes, I know can you can turn it down if you can come up with a legitimate business reason for doing so – but that always seems to be much harder in practice than it sounds in theory (annoyingly, ‘because I can’t really be bothered’ apparently doesn’t fall within the bounds of legitimacy).”

 

The Coalition government seems to think that entepreneurship is the cure-all to both the lack of jobs and their keenness to trim the slim welfare budget. When one initiative crashes and burns, another rises out of its ashes. In late March 2011 David Cameron launched “StartUp Britain” with heavy marketing and media push. Great claims were made off the back of a decidedly sub-par website that appeared to be more about smug movers and shakers backing it than those of us needing support (and a .org domain rather than .org.uk). Within a week the eurphoric glow of promise was already on the wane. “StartUp Britain and Better Business Finance offer help to small businesses and entrepreneurs, but teething problems and a lack of genuine advice has left some users cold” a Guardian sub-head roared.

This enterprise was apparently meant to sound the death-knell of the existing government support and advice portal for the ambitious, BusinessLink. The derision against the new upstart gave its also much-maligned predecessor ( £35m a year for the Business Link website? Really??) a second chance, no thanks to UK-based Creatives and Techies like myself who were supremely shafted by the profit-driven dodgy dealings of StartUp Britain steering our potential clients to US-based low-spec business.

Fast-foward to late January 2012. The Prime Minister has launched yet another entrepreneurship initative, “Business in You”, replete with its own .bis.gov.uk website.  Despite it’s suggestive spin of launching the campaign, StartUp Britain is but one of a number of  partners selling the masses on the idea than anyone and everyone can be their own boss (no redundancy worries or benefits conundrums!). The slightly resurrected BusinessLink is another. How convenient then, that according to a recent survey over 60% of the Forum of Private Business membership believe that the latest incarnation of  Business Link is ‘inadequate to aid growth’ – not dissimilar to concerns raised about StartUp Britain as soon as it was launched. Entrepreneurs are key to saving the economy and the government is so sure of this it has established Enterprise Zones across the UK (an adaptation of the regional themes long-touted by BusinessLink).

BL at least attempted to shine light, however dim, on the needs of people with disabilities who want to be self-employed. The same can’t be said for its successors. I have spent the better part of two years floundering, barely keeping my head above water as I begged for help and fought to not be forced into the usual dead-end workfare schemes. It was purely by chance that I caught wind of last weeks #BenefitsCamp event organised by FutureGov, a consultancy and social innovation incubator helping to shape the future of government through social innovation. The event itself was for “anyone up for helping fix/change/improve the benefits system – or even better create entirely new ways of doing things”.  I’ve had a project simmering for quite a while as I’ve gleaned bits of information here and there in my quest to be useful once more.

My original #benefitscamp idea apart from the team initiative is a FREE central wiki for #disabled people that would local, regional, regional & EU business support & info. This would be augmented with a website, social media platform and forum. Integral to this would be a mentorship service that can match end-users (Clients) with with competent, successful mentors who can guide & support them in their chosen business area of interest.  In my experience this aspect of mentoring would offer significant value-add to the enterprise. For example, my council paired me up with an old-time retired hotelier who had no idea about the graphic or web design, social media or marketing. I met with him for an hour at the job centre only to be told that I couldn’t get financial help because my county is “too affluent and there’s no money” and the best he could do was flip through a large binder of outdated, poorly photocopies and hand over loose pieces of paper. He wished me luck with a smirk, signed the forms I needed for A4E and the Job Cemtre and that was it. He walked away having learned quite a few new tricks whilst I broke down in tears as I made my way home having not been told anything that I didn’t already know and feeling very alone and let down.

What exists in the market now is patchy and inadequate – and there is a significant need for an enterprise that is oriented around the needs of people with disabilities and invisible illness even before the benefit cuts really take hold. I am keen to pursue this because despite the huge numbers of disabled people crying out for help, nothing is really being done about it. Instead we are being forced into situations that will be disastrous for our health and well-being over the intermediate and long term – and at the extreme end some of us are taking our lives due to the absence of being supported. 

 

Related information:

Business Link is underused, underfunded and ‘irrelevant’ (managementtoday.co.uk)

£35m a year for the Business Link website? Really?? (managementtoday.co.uk)

Secret Diary of an Entrepreneur: Uncommitted to flexibility (managementtoday.co.uk)

Small businesses let down by StartUp Britain (guardian.co.uk)

StartUp cock-up (creativereview.co.uk)

Can StartUp Britain kick-start growth? (managementtoday.co.uk)

There’s a business in you: Government and Private Sector launch major campaign (startupbritain.org)

FutureGov (http://wearefuturegov.com)

So The Welfare Reform Bill Doesn’t Affect YOU!?! #WRB (darkestangel32.wordpress.com)

Disability Rights UK condemns impact of Welfare Reform Bill (ekklesia.co.uk)

Joint Committee on Human Rights report on the likely impact of the WRB on disabled people (ekklesia.co.uk)

Welfare Reform Bill: Government defeated over ESA cuts (bbc.co.uk)

Peers inflict seventh Welfare Reform Bill defeat (bbc.co.uk)

The welfare reform bill will incentivise people: to turn on David Cameron (guardian.co.uk)

Welfare reform: what choice is there for those forced off disability benefits? (guardian.co.uk

Business Link’s demise leaves a hole that needs filling, say small firms (businesszone.co.uk)

 

 

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