I still don’t want to live this life – the real world 2 months #afterESA

Today marks the point of no return for many disabled and ill people. An estimated 40,000 – 100,000 of those in our community who have worked will lose our Contributory Employment Support Allowance (ESA)  thanks to the new one year time limit railroaded through Parliament as part of the recent welfare reforms.

I’m one of them.

As regular followers are aware, I was forced to cast myself adrift two  months ago after Atos harassed me on the phone re a new WCA. The handwriting was on the wall as I’d received a brown envelope of doom from the DWP late last year informing me that this would happen if the Welfare Reform Bill passed. The options potentially available *if* I still needed help were JSA & Workfare. Needless to say, I had a very public mental health meltdown on Twitter. In fact, it carried on for a few days. When the raging red mist dissipated a bit, I cancelled my ESA claim. Thus began the arduous process of trying to get on my feet quickly as #selfemployeddisabled. My backdated DLA claim had taken so long that by the time I was finally successful late last year, I was facing only brief moment of peace before the DWP and Atos would start harassing me again about *that* claim alone. I just didn’t have it in me to constantly battle for things that, in my mind, I really shouldn’t have to. I still don’t.

To deal with ESA and DLA battles again was more than I could cope with – especially with the Atos playing the system to force me to go to the military bunker in Cardiff for the ESA WCA despite them having just been to my flat for the DLA “exam” – albeit very reluctantly. Both of which are farcical, to say the least. The government’s preferred profiteering provider excels in making things as difficult as possible with the backing of the DWP.  Fighting for survival on every front with no practical support takes a toll physically, mentally and emotionally. I’ve always been much better at helping other people than helping myself (another reason why I’m in the mess that I’m in financially).

Life #afterESA isnt worth living if I’m going to end up homeless again. There is still no genuine support whatsoever. I immediately lost Housing & Council Tax Benefit. I re-applied to Vale of Glamorgan Council as self-employed with £0 income – which they don’t seem to understand is entirely possible, especially when just starting out. I  can’t afford to remain where I moved to to cut expenses or to move out of the area because business funding etc focused on S. Wales Valleys. Even the local university offers free courses – just not to hard-up locals in this “affluent” county. People expecting me to work free or very cheap aren’t helping either (ironically friends & acquaintances with strong opinions about why “someone supposedly so talented can’t make a living”). Access to Work is proving to be just another #ukgov scam with me caught between the JobCentre & private corps they outsource to all over the UK, including Remploy for horrible mental health support (which I’ve written about in the blog). The Jobcentre aren’t happy with the reports they are getting from the independent disability assessor because they “don’t give a clear idea of what my disabilities are”. This pissing contest has been going on since February 15. It’s worth noting that despite my exhaustive documentation for ESA and DLA, Access to Work insist my medical records aren’t necessary because they “aren’t as rigid as other parts of the JobCentre.”

I’ve done everything I was asked and told to do. I’ve been treated like garbage as an ethnic foreign national who’s domiciled here & only paid 40% tax until my problems with disability & illness forced me down a road I never dreamed I’d have to take. Being Native American adds a whole other level of difficulty to my life no matter where I live in the world and the UK is no exception. That’s not my Severe Depression talking either, armchair psychiatrists; The London School of Economics & Political Science last week highlighted the reality that

the already disadvantaged and little understood BME disabled community will suffer greatly under austerity measures. Robert Trotter argues social groupings like that of the black and minority ethnic (BME) disabled are becoming increasingly complex and harder to identify. Greater understanding of these groupings are needed so policymakers carry out more informed decisions in times of austerity.

The Equalities National Council (ENC) and Scope have today published new research on disabled people from black and minority ethnic backgrounds (BME) – a group who haven’t previously been present in research and policy, and who are suffering badly from cuts to public spending. As The Guardian recently reported services for BME disabled people are being disproportionately affected by shrinking council budgets, and authorities are often neglecting to carry out thorough equalities impact assessments. Yet what we found is that the BME disabled constituency is larger and poorer than had previously been thought. Policy-makers, advocates and service providers should consider more carefully how such overlapping identities can affect, and be affected by, policy decisions.”

source: LSE Blog

I couldn’t even get Working Tax Credit forms without being subjected to the equivalent of an Immigration interview by the HMRC. Another unnecessary delay was needing 2 of their officers to visit my flat to confirm that “I am who I say I am because they don’t have enough information on me”… despite me having lived here for over a decade. They had my Tax history but still needed to see my passport, Home Office documents and other records. I have yet to hear from them  about if I will get the tax credits or not – more than a month after they received the forms. I followed up with a phone call to see where things stood, which supposedly I’m allowed to do, only to essentially be told to sit tight and wait for their brown envelope of doom.

If I become homeless again life won’t be worth living. Fact. To those who seem mightily offended that I won’t “eff off  home” to the US (including GPs); the UK is my home and Wales especially. I have absolutely nothing to go back to even if I really wanted to. My life is HERE – no matter how bad it happens to be!

I’m not idle, just unsupported! thecreativecrip.com exists mainly to document the problems faced by disabled & otherwise ill people who are routinely denied the opportunity to prove to those that judge us, and ourselves, that we are useful. 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 the inaugural #BenefitsCamp event in February organised by FutureGov, a consultancy and social innovation incubator helping to shape the future of government through social innovation. The great irony of #benefitscamp is that the team dominated by people with disabilities and invisible illness won the Ideas pitch session. The supreme irony for me is that in the days leading up to the event I had a suicidal meltdown capped with my “I don’t want to live this life” blog post the day before. It took willpower I didn’t know I had to keep myself alive in the aftermath of the Prime Minister, with the full support of the House of Commons, invoking an archaic privilege and overturning Welfare Reform Bill amendments passed by the House of Lords#benefitscamp gave me (& other disabled ppl) a chance to show what was possible with inclusiveness, accessibility & support. Unfortunately there’s no income or opportunity from the effort put into our winning project.

All I’ve ever asked is support with diagnosing and managing my health conditions and help with getting both of my businesses up and running (Iconic Imagery, Marketing Communications & Design and Rise Up UK, a social enterprise / project I started to support people with disabilities interested in entrepreneurship). Ironically enough – the social enterprise seems to hold the most promise; the interest was such that I was prompted to go forward with it  much sooner than planned in the run-up to my first ever radio appearance (ironically  on the subject of Workfare). The initiative is on the radar of Society Guardian – a blessing which I couldn’t have anticipated, but which also adds to the pressure of me really needing to “make the magic happen”.

However good my intentions, everything that needs doing requires funds that I don’t have. I’m down to my last £100 to cover some of the bills. I had to borrow money from a friend just to meet the shortfall in my £650 rent and buy myself another month here. Technically I’m at the end of my lease and really don’t want to renew for the reasons cited above. The local foodbank seems to be run like an exclusive food club like Carrefour so no help there with groceries I need now. I was under the impression I was going to have help with the socent but was cut loose when oranisations realised I couldn’t afford to pay up-front membership fees (£75/yr up to £200/mo). These experiences are why I want to  launch my @RiseUpUK #socent to help #selfemployeddisabled for free. Last month I had to make a choice between the fee for Social Enterprise UK or groceries for 6 weeks. Guess what I chose?

For those on the “get a job bandwagon”, my LinkedIn Profile nets results, but the reality is that people with disabilities are not the most desirable candidates. Case and point: I was being courted by the BBC to do the work of 3 people in an “exciting new role” managing The Doctor Who Experience here in Cardiff only for communications to go dead cold after I made it clear that I was disabled. This, after I thought I’d nailed it as I am a member of the Experience in Second Life (something the HR Manager had no knowledge of). Not all of the roles I’ve been approached for have been so exciting or high-flying, but the result has always been the same. I’m sick and tired of hearing how I would be a great asset to this or that group or organisation only to be cut off at the knees because of my financial and health problems.

Crips are not wanted or useful, no matter how creative they are. No amount of  hype from those who discount luck and having the right connections willing to help is going to change that – ever.

Related articles:

I don’t want to live this life… (thecreativecrip.com)

Very few reasonable adjustments for disabilities (thecreativecrip.com)

The “Me” You Don’t Know (thecreativecrip.com)

TBA on #creativecrip – new section detailing my personal experiences with Atos (thecreativecrip.com)

What is Rise Up UK? (rise-up.thecreativecrip.com)

Don’t bother to ask for help you know you won’t get (thecreativecrip.com)

Smoke and Mirrors: Remploy & Access to Work (thecreativecrip.com)

ATOS Meltdown Continued: Dark Night of the Soul (thecreativecrip.com)

#CreativeCrip in the media: “Technical Difficulties” radio show 9th March 2012 (thecreativecrip.com)

Media: “Technical Difficulties” with Tim Abbott – 24 Feb 2012 (thecreativecrip.com)

STORIFY – “After ATOS Calls: Mental Health Meltdown” (thecreativecrip.com)

Dear #UKgov – The #Workfare Tarot doesn’t lie … (thecreativecrip.com)

#Workfare #WorkProgramme: My Solutions for #UKgov #WRB (UPDATED) (thecreativecrip.com)

One life to live: the irony on #BenefitsCamp (thecreativecrip.com)

Not idle, just unsupported: my original #disabilityUK #dpulo idea for #benefitscamp (thecreativecrip.com)

#HardestHit – Marketing 101 (thecreativecrip.com)

#HardestHit Jedi Mind-Tricks (thecreativecrip.com)

Scrounging Statistics and Soundbites No. 3: Millionaires & The Welfare State (thecreativecrip.com)

It’s official: reasonable adjustments not allowed (thecreativecrip.com)

From Passive to Active Disability Campaigner (thecreativecrip.com)

Disabled Activists and the Anti-Cuts Movement (thecreativecrip.com)

Lisa J. Ellwood, LinkedIn Profile (linkedin.com)

Work-Benefits-Balance #BenefitsCamp Project (worklifebalance.thecreativecrip.com)


6 thoughts on “I still don’t want to live this life – the real world 2 months #afterESA

  1. Pingback: The Creative Crip | Meanwhile back at the ranch… 8 Months #AfterESA by @CreativeCrip

  2. The fact of the matter is this. this government wants severely disabled people DEAD!! the contract for assessing people for esa was awarded to atos because, as a private enterprise they are NOT subject to reasonable disclosure under the freedom of information act 200. perhaps the health reform act would be better described as the genocide by proxy act, that sounds rather over the top for some people but looking at what is happening, and what has happened. leading up to this piece of legislation. it is plain that society has been gradually brainwashed into perceiving disabled people as scroungers. this psychologi8cal warfare upon the mind has made it easy for the government to get away with murder at state level. only now are people seeing what is really happening. and perhaps some will realize they have been lied to all in the name of, what?. I make no apology for what I have said, the DWP the ministers in their finery. and all those who are culpable in this exercise in what is essentially mass murder have unleashed a storm that will not die down for a long time to come. you will rue the day you enacted this law.

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  4. People expecting me to work free or very cheap aren’t helping either…

    Quite. Some years ago, a guy asked me to build a website, to publicise his rental property in Spain. When I told him he’d have to provide me with information about the property and local infrastructure – or pay for me to research it – as well as for the website, he quickly lost interest.

    Never ceases to amaze me, the idea that someone should do, for free, work people aren’t capable of doing themselves.

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