tag:blogger.com,1999:blog-349405642024-03-14T07:25:14.529+00:00Benefit Scrounging ScumLife in a broken bureaucracy with a bendy and borked bodyBenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.comBlogger984125tag:blogger.com,1999:blog-34940564.post-9574672781917236702015-05-01T10:51:00.000+01:002015-05-01T11:07:51.257+01:00Bloody Skegness! Blogging Against Disablism Day #BADD2015<div class="MsoNormal">
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When I was a young adult..<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">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.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">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. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When I was about 30 I started to be able to dream of a life
like the one I have now…<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">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. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The hardest part was…<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">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.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">If you want to live independently…<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">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. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">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. <o:p></o:p></span></div>
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<o:p><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">By Shaun Webster, supported by Kaliya Franklin </span></o:p></div>
<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0tag:blogger.com,1999:blog-34940564.post-70581815863282787202015-02-02T10:53:00.000+00:002015-02-18T08:29:26.299+00:00Lucy Frances Glennon 3/12/1985 - 29/1/2015 @LucyTweeting<div align="center" class="MsoNormal" style="text-align: center;">
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<span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">“The Daily Mail must hate me. I have
(foreign) carers making my sandwiches”</span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihXtctj7On2_lSBV-sFJu_Moxohk82VLjpqfG5b2oIu-OWv8rl0Z4NAgiG4zWH0QFr4pfcYBicz3lnPn98RGT4cgyWfTlzs1Y2T4trB7RJ-LoNoqgopNfAMgDetUv0bFZmi2Hs/s1600/lucy+glennon+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihXtctj7On2_lSBV-sFJu_Moxohk82VLjpqfG5b2oIu-OWv8rl0Z4NAgiG4zWH0QFr4pfcYBicz3lnPn98RGT4cgyWfTlzs1Y2T4trB7RJ-LoNoqgopNfAMgDetUv0bFZmi2Hs/s1600/lucy+glennon+2.jpg" /></a></div>
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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
<a href="http://www.debra.org.uk/" target="_blank">debra UK</a> 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. <o:p></o:p><br />
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(Updated thanks to Kate Spector - Lucy's storify of (not) meeting David Cameron. The photo speaks for itself)<br />
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<div class="storify">
<iframe allowtransparency="true" frameborder="no" height="750" src="//storify.com/LucyTweeting/david-cameron-really-likes-sean-bean/embed?border=false" width="100%"></iframe><script src="//storify.com/LucyTweeting/david-cameron-really-likes-sean-bean.js?border=false"></script><noscript>[<a href="//storify.com/LucyTweeting/david-cameron-really-likes-sean-bean" target="_blank">View the story "David Cameron really likes Sean Bean. " on Storify</a>]</noscript></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpJR9mfpK6LakE-gk0YtdTamkT6mGMN2uJnM3MBSn8WEVf-lBVWHvfPC3_AZSv300TtL0wGxbKgzOvANLd2Xq1PL6Vh30JeESSRMZJykoaMp1nFslOoMDIodb6gRBL96qJfVkx/s1600/lucy+cameron+bean.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpJR9mfpK6LakE-gk0YtdTamkT6mGMN2uJnM3MBSn8WEVf-lBVWHvfPC3_AZSv300TtL0wGxbKgzOvANLd2Xq1PL6Vh30JeESSRMZJykoaMp1nFslOoMDIodb6gRBL96qJfVkx/s1600/lucy+cameron+bean.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lucy sat in her wheelchair at a Downing Street event, Sean Bean studiously looking at his nails and Cameron ignoring everyone</td></tr>
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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.<o:p></o:p></div>
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<span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">“Jamie Oliver's remarks about people
on benefits eating cheesy chips is unfair. I'm on benefits and I prefer chips
with aioli.”</span><o:p></o:p></span></div>
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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. <o:p></o:p></div>
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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’. <o:p></o:p></div>
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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. <o:p></o:p></div>
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When the government changed and immediately announced
sweeping cuts to social security, Lucy was one of the first people to get
involved with <a href="http://thebrokenofbritain.blogspot.co.uk/">The Broken of
Britain</a> and later the <a href="http://www.theguardian.com/society/2012/jan/17/disability-spartacus-welfare-cuts-campaign-viral">Spartacus
report</a>. Living in Camden she was able to attend <a href="http://www.theguardian.com/society/joepublic/2011/may/11/disabled-people-hardest-hit-march-in-london">The
Hardest Hit</a> marches in person, nag all her journalist contacts and wrote
as many articles as she could.</div>
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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.</div>
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Lucy was one of those I worried about most. People
with <a href="http://www.nhs.uk/conditions/epidermolysis-bullosa/pages/introduction.aspx">Recessive
Dystrophic Epidermolysis Bullosa</a> 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.<o:p></o:p></div>
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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 <a href="http://www.theguardian.com/profile/lucy-glennon">the articles</a> 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? <o:p></o:p></div>
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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. <o:p></o:p></div>
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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. <o:p></o:p></div>
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<span style="font-size: 14.0pt; line-height: 107%;"><a href="http://www.theguardian.com/society/2008/aug/08/disability.health"><span style="color: blue;">“Imagine
a constant pain all over - a pain you are used to because it is all you have
known, and you have it with you all the time, kind of like a friend”</span></a></span><o:p></o:p></div>
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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, <a href="http://www.theguardian.com/commentisfree/2010/oct/01/twitter-benefit-cheat-nadine-dorries">calling
out</a> <a href="http://www.theguardian.com/commentisfree/2010/dec/15/disabled-people-government-bullying">politicians</a>
for an <a href="http://www.theguardian.com/commentisfree/2011/mar/02/work-capability-assessment-anguish-disabled-people">increasingly</a>
<a href="http://www.theguardian.com/commentisfree/2011/may/12/hardest-hit-march-disability-allowance">common</a>
<a href="http://www.theguardian.com/commentisfree/2011/may/27/housing-benefit-cuts-disability">bullying</a>
<a href="http://www.theguardian.com/commentisfree/2011/jun/17/disability-pay-minimum-wage">attitude</a>
towards those on disability benefits. <o:p></o:p></div>
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<a href="http://www.theguardian.com/society/davehillblog/2012/jan/16/london-housing-benefit-caps-disability">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</a>.
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. <o:p></o:p></div>
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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. <o:p></o:p></div>
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Lucy wrote this to David Cameron as part of a campaign on
the 17th September 2011.<o:p></o:p></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">“I have never felt
lower.<o:p></o:p></span></span></i></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">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.<o:p></o:p></span></span></i></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">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.<o:p></o:p></span></span></i></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">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.<o:p></o:p></span></span></i></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">I receive DLA, Income
Support and even Severe Disablement Allowance. Yet despite being acknowledged
as one of the most deserving recipients of housing benefit, <b>the office who deal
with my benefit do not understand why I am to be one of the worst off, with no
exception.</b><o:p></o:p></span></span></i></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">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<o:p></o:p></span></span></i></div>
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<i><span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">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 <b>you are no man of
honour.”</b><o:p></o:p></span></span></i></div>
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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.<o:p></o:p></div>
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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<o:p></o:p></div>
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<span style="font-size: 14.0pt; line-height: 107%;"><span style="color: blue;">“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).”</span></span><o:p></o:p></div>
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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. <o:p></o:p></div>
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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. <o:p></o:p></div>
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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. <o:p></o:p></div>
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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. <o:p></o:p></div>
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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<span style="color: cyan;"> '</span><span style="font-size: 14pt; line-height: 107%;"><span style="color: blue;">flying like a squirrel on wheels'</span></span>, crack lolly in situ,
shouting <span style="color: blue;"><span style="font-size: 14pt; line-height: 107%;">‘go faster you piece
of shit’</span>.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj16IHKTtIfMdTTzbYTfAOrvPOiBrZxrT4VqeuCiTyynan-qSyKHYVHNVAI_yL-ASZwQs6ry7h9bj855zq726JYKKTFPUCEeGbG0vjTFRTH_mcZThj74qpCzfd-FAfXqlT_Eyht/s1600/Lucy-Glennon-460x276.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj16IHKTtIfMdTTzbYTfAOrvPOiBrZxrT4VqeuCiTyynan-qSyKHYVHNVAI_yL-ASZwQs6ry7h9bj855zq726JYKKTFPUCEeGbG0vjTFRTH_mcZThj74qpCzfd-FAfXqlT_Eyht/s1600/Lucy-Glennon-460x276.jpg" height="240" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">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</td></tr>
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<o:p></o:p></div>
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<span style="color: blue;"><span style="background: white; font-size: 14pt; line-height: 107%;">“I can confirm it's not possible to twerk in a wheelchair. It
looks more like you have an itchy backside. You're welcome.</span>”</span><span style="font-size: 14.0pt; line-height: 107%;"><o:p></o:p></span></div>
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Lucy Frances Glennon 3/12/1985 - 29/1/2015<br />
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Added 18.02.2015<br />
<br />
Coverage in The Guardian about Lucy,<br />
<br />
<a href="http://www.theguardian.com/commentisfree/2015/feb/04/farewell-lucy-glennon-writer-campaigner-epidermolysis-bullosa" target="_blank">Farewell Lucy Glennon. A brilliant writer, campaigner and 'total badass' </a><br />
<br />
<a href="http://www.theguardian.com/society/2015/feb/17/lucy-glennon-disability-activist-real-effects-of-cuts?CMP=share_btn_tw" target="_blank">Lucy Glennon - what her life tells us about the real impact of cuts on disabled people</a><br />
<br />
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<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com5tag:blogger.com,1999:blog-34940564.post-72966650332951669082015-01-19T10:24:00.000+00:002015-01-19T10:24:45.621+00:00Gary's blog about working together and being off sick <span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;">I have just read <a href="http://benefitscroungingscum.blogspot.co.uk/2015/01/on-working-and-sleeping-mostly-sleeping.html" target="_blank">Kaliya’s blog</a>, 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.</span><br />
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;"><br /></span>
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;">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.</span><br />
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;"><br /></span>
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;">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.</span><br />
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;"><br /></span>
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;">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.</span><br />
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;"><br /></span>
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;">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.</span><br />
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;"><br /></span>
<span style="background-color: white; font-family: Arial, sans-serif; font-size: 19px;">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. </span><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0tag:blogger.com,1999:blog-34940564.post-87990983284404010102015-01-13T09:49:00.002+00:002015-01-13T09:49:40.159+00:00On working. And sleeping. Mostly sleeping.. <span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Spoonydoc has written <a href="http://loopys-rollingwiththepunches.blogspot.co.uk/2015/01/going-back-to-work-from-support-group.html#comment-form" target="_blank">this </a>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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">But showering takes energy. Energy I simply don't have. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com12tag:blogger.com,1999:blog-34940564.post-61722966181196678242014-05-21T09:56:00.002+01:002014-05-21T09:56:34.418+01:00DaDa Fest - Working Lives - Here and There Press ReleaseNext 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<br />
<br />
<br />
<p style=" margin: 12px auto 6px auto; font-family: Helvetica,Arial,Sans-serif; font-style: normal; font-variant: normal; font-weight: normal; font-size: 14px; line-height: normal; font-size-adjust: none; font-stretch: normal; -x-system-font: none; display: block;"> <a title="View DaDaFest - Working Lives - Here and There Press Release on Scribd" href="http://www.scribd.com/doc/225401937/DaDaFest-Working-Lives-Here-and-There-Press-Release" style="text-decoration: underline;" >DaDaFest - Working Lives - Here and There Press Release</a></p><iframe class="scribd_iframe_embed" src="//www.scribd.com/embeds/225401937/content?start_page=1&view_mode=scroll&show_recommendations=true" data-auto-height="false" data-aspect-ratio="undefined" scrolling="no" id="doc_24068" width="100%" height="600" frameborder="0"></iframe><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com3tag:blogger.com,1999:blog-34940564.post-13591904665261947152014-05-06T17:18:00.000+01:002014-05-06T17:18:20.364+01:00Easy News Shortlisted For The Charity Awards 2014 <span class="userContent">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 b<span class="text_exposed_show">een
shortlisted for <a href="http://www.charityawards.co.uk/shortlist/" target="_blank">The Charity Awards 2014</a>. Congratulations to everyone
involved in Easy News, especially to the consultants who write the
paper, but also to <a data-hovercard="/ajax/hovercard/page.php?id=121263291253273" href="https://www.facebook.com/UnitedResponse">United Response</a> for being willing to take a chance on a new idea and work in a new way to make the paper such a success</span></span><br />
<br />
<span class="userContent"><span class="text_exposed_show">You can download the latest edition of Easy News <a href="http://www.unitedresponse.org.uk/wp-content/uploads/2014/04/Easy-news-issue-8.pdf" target="_blank">here</a> for free! </span></span><br />
<br />
<br />
<h4>
<em>Improving access to news for people with learning disabilities</em></h4>
<img alt="United-Response-500px" class="alignright size-full wp-image-2697" height="333" src="http://www.charityawards.co.uk/assets/United-Response-500px.jpg" width="500" />One
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.<br />
<br />
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.<br />
<br />
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 <a href="http://www.unitedresponse.org.uk/wp-content/uploads/2012/02/Disability-sickness-and-work-easy-read-FINAL-.pdf" target="_blank">accessible news report</a> 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.<br />
<br />
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.<br />
<br />
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”.<br />
<br />
This year, Easy News is being funded out of the charity’s legacy
funds while a sustainable funding model is devised – probably involving
advertising.<br />
<br />
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”.<br />
<h3>
<a href="http://www.unitedresponse.org.uk/">www.unitedresponse.org.uk</a></h3>
<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com1tag:blogger.com,1999:blog-34940564.post-3195258078403680662014-05-01T11:06:00.000+01:002014-05-01T11:06:19.406+01:00Hard 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 <a href="http://blobolobolob.blogspot.co.uk/" target="_blank">Diary of A Goldfish</a>. It's the 8th BADD I've taken part in, and reading back through <a href="http://benefitscroungingscum.blogspot.co.uk/search/label/blogging%20against%20disablism%20day" target="_blank">my old blogs </a>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.<br />
<br />
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 <a href="http://www.nhs.uk/Conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx" target="_blank">Ehlers Danlos Syndrome</a>, 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.<br />
<br />
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.<br />
<br />
It's almost two months now since I started work as co-development lead for <a href="http://peoplefirstengland.blogspot.co.uk/" target="_blank">People First England</a>. 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
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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.<br />
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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?<br />
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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, <a href="http://www.yourbritain.org.uk/agenda-2015/policy-commissions/work-and-business-policy-commission/breaking-the-link-between-poverty-and-disability" target="_blank">Breaking the links between disability and poverty</a> 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.<br />
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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.<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com10tag:blogger.com,1999:blog-34940564.post-63810829020625312702014-04-25T08:47:00.000+01:002014-04-25T09:02:06.441+01:00Actions speak louder than words - Labour publish Poverty & Disability taskforce report<br />
<a href="http://benefitscroungingscum.blogspot.co.uk/2013/06/labour-announce-independent-task-force.html" target="_blank">Last June</a> 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 <a href="http://www.yourbritain.org.uk/agenda-2015/policy-commissions/work-and-business-policy-commission/breaking-the-link-between-poverty-and-disability" target="_blank">Labour's policy submission site</a>. 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.<br />
<br />
As Neil Crowther explains on his <a href="http://makingrightsmakesense.wordpress.com/2014/04/24/labour-party-poverty-and-disability-taskforce-report-published/" target="_blank">blog</a>, 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.<br />
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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.<br />
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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. <br />
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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 <a href="http://www.labour.org.uk/contact" target="_blank">here</a><br />
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Had there been a press release from the taskforce, this is what we would have said;<br />
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“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. <br />
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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. <br />
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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. <br />
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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.'<br />
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com11tag:blogger.com,1999:blog-34940564.post-55469525719167989742014-04-07T10:09:00.002+01:002014-04-07T10:09:42.276+01:00Journey 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?<br />
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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.<br />
<br />
This is why people end up with payday loans or go to foodbanks. There isn't another way.*<br />
<br />
If I make a genuine mistake filling out a benefits application I get <a href="http://www.bbc.co.uk/news/business-12506273" target="_blank">fined £50</a><br />
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But if I were a <a href="http://www.telegraph.co.uk/news/newstopics/mps-expenses/conservative-mps-expenses/10748728/Maria-Miller-faces-questions-over-tax-on-home-sale.html" target="_blank">Cabinet Minister</a>, a former Minister for Disabled People, who had pushed through these cuts affecting disabled people and working people...<br />
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<span style="font-size: x-small;">*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? </span><br />
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<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com3tag:blogger.com,1999:blog-34940564.post-17275575968917395162014-03-12T09:14:00.004+00:002014-03-12T09:14:49.520+00:00Journey to Work Part 4 - I'm finally off ESA! After <a href="http://benefitscroungingscum.blogspot.co.uk/2014/03/journey-to-work-part-3-my-first-day-i.html" target="_blank">more hours on hold</a> 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....<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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..<br />
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<span style="font-size: x-small;">*frequently smelling of sick, so it's a good job I'm avoiding face to face meetings! </span><br />
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com5tag:blogger.com,1999:blog-34940564.post-52389482312869525322014-03-10T14:21:00.000+00:002014-03-10T14:21:04.503+00:00Journey to Work Part 3 - My First Day - I seem to still be on ESA.. <blockquote class="twitter-tweet" lang="en">
Today is my 1st day of paid work in over 10 yrs. Exciting/terrifying. Fortunately tax credits top up not UC as UC means not enough to work<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442928813690073088">March 10, 2014</a></blockquote>
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Which is a crying bloody shame. A simplified support system would make work easier but not one that provides £4000 p/a LESS than tax credits<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442929141588193280">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Was going to phone benefits enquiry line to find out who to phone at DWP to end ESA claim. Benefits inquiry line been closed down<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442939041420697601">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Just a wee hint <a href="https://twitter.com/DWPgovuk">@DWPgovuk</a> but it'd be handy if you had some easily available info on who to tell & how when you've been on ESA & find work<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442939540521877504">March 10, 2014</a></blockquote>
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<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script><br />
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<blockquote class="twitter-tweet" lang="en">
Can I count copious vomiting before 9am as a work related achievement?<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442947754088988672">March 10, 2014</a></blockquote>
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<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script><br />
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<blockquote class="twitter-tweet" lang="en">
Plan 1 - try to unclaim ESA via the ESA claim line. <a href="https://twitter.com/search?q=%23Fail&src=hash">#Fail</a><br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442967823619719168">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Plan 2 - try phoning local JobCentrePlus - options are 'get a new job', new benefits claims, appointments. <a href="https://twitter.com/search?q=%23Fail&src=hash">#Fail</a> 2<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442968426945187841">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Random selection of options in desperate hope of getting through to a human <a href="https://twitter.com/search?q=%23Fail&src=hash">#Fail</a> 3<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442968623209283584">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Now attempting to claim tax credits in the hope they'll also know how to stop the ESA claim..<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442969935665713152">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Two questions in and I can't answer the bloody automated tax credits questions. ARGH!!!!<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442970117576855552">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Honestly. It's like they want me to commit benefit fraud or something. <a href="https://twitter.com/DWPgovuk">@DWPgovuk</a> please can you help & tell me who to tell I've got a job?!<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442970487472541696">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Trying to claim tax credits attempt 2. Attempt 1 failed because despite apparently being articulate I can't cope with automated questions<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442971445631926272">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Finally through to nice tax credits human Application form will be with me in 2 weeks. He seems bothered by no easy way to notify DWP of job<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442973457861836801">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
I give up. Opting for the 'claim new benefits' option as can't get through any other way. If it's automated I may scream<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442974288896081920">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Finally on hold to what is, hopefully, the ESA helpline. Overjoyed I've spent 1st day of new job trying to tell DWP I've got said job<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442975415045742592">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Hmm. Just checked timeline. I have a worrying feeling the ESA helpline is where I started some time ago...<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442975803643809792">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Now through to a very lovely lady in Bootle. "You want to stop your claim? Are you sure?"<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442976734091415552">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Asked lovely Bootle lady what happens if in six months time I'm too sick to work. She's never heard of linking rules & is reading guidance<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442976900584337409">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Somebody at <a href="https://twitter.com/gdsteam">@gdsteam</a> please read <a href="https://twitter.com/BendyGirl">@Bendygirl</a>'s tweets applying for tax credits. It takes a heart of stone to follow that UX without laughing.<br />
— Gordon Rae (@socialtechno) <a href="https://twitter.com/socialtechno/statuses/442975389984784384">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
LovelyCarer now dancing to the blasting sound of bloody Vivaldi coming from phone. She says abuse line is better cos it plays Greensleeves<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442977123964559361">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Accuracy note - LovelyCarer may or may not have made up that bit about fraud line & Greensleeves. It's impossible to tell..<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442977278621134848">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
As auspicious first days at work go...this is a good'un. Vomiting and endless calls to the DWP.<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442977678875172864">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Linking rule used to be 104 weeks. Scrapped in 2012. Now you get 13 weeks and after that they close your claim.<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442978008467775488">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Lovely Bootle lady is worried about me starting work due to 13 weeks cut off to return to ESA if too poorly for work.<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442978267176648704">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
She's now arranging for advisor to phone me to check whether I'd be better off on permitted work-if 104 week rule still existed it'd be work<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442978735500042240">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
So, all in all I'm declaring today a resounding success. Vomiting, endless helplines & I think I'm still on benefits. Employment FTW!<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442980307239993344">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Work is supposed to provide a sense of achievement right? Well I have worked hard this morning yet somehow not achieved anything..<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442987428320903168">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Enjoyed 1st day of still being on benefits but working because I can't work out who to tell. Too tired now. Guess I'm still a scrounger..<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/442988579464417280">March 10, 2014</a></blockquote>
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<blockquote class="twitter-tweet" lang="en">
Nice DWP permitted work man phoned. So confused. My brain may explode. And still on benefits. I think...<br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/443023528158584832">March 10, 2014</a></blockquote>
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Listening to <a href="https://twitter.com/afneil">@afneil</a> interview IDS whilst embedding 'my 1st day at work, seem to be still on benefits' tweets blog <a href="http://t.co/UjVm4kUBUu">http://t.co/UjVm4kUBUu</a><br />
— BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/443026670031994880">March 10, 2014</a></blockquote>
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com6tag:blogger.com,1999:blog-34940564.post-32201532051375977952014-02-24T08:32:00.001+00:002014-02-24T08:32:47.888+00:00Brown Envelopes & Bureaucratic Bullshit (Journey to work, Part 2) Two DWP envelopes in the past two days. Nearly gave me a heart attack when I spotted them. The first was what used to be a standard 'rates of benefits will change' letter - but the language and order of information is both intimidating and confusing. It wasn't until I got to page 3 that I realised I didn't have to follow the 'mandatory reconsideration' process outlined on page 1; in fact I don't have to do anything. Good job I've got an LLB/Hons, its only three years training in how to read legalese nonsense that has equipped me to occasionally be able to translate DWP speak.<br />
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The second letter was better news - my equipment will be funded by Access to Work. Which is great. Even the expensive bits of it I explained I was highly likely to be unable to use. 'Just try it out' is good advice, apart from the bit where what you're trying out costs hundreds of pounds, isn't the answer and is really being imposed instead of providing support worker support.<br />
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As for when I'll know about support worker hours, your guess is as good as mine. The battle over the <a href="http://www.disabilitynow.org.uk/article/atw-denying-access-work" target="_blank">20% limit </a>continues. All the guidance read by myself and other disabled people leads us to the same conclusion - the 20% limit is being applied incorrectly. The consistency in the incorrect application by advisors in different locations leads me to speculate that the advisors have been trained to provide the incorrect application, perhaps to limit the costs of Access to Work despite its financial return for the Treasury. Oh, and that small matter of 3.5 years of 'work is always best' rhetoric..<br />
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Ah well, my employer and I have only been waiting for this since early January. What's another few weeks when you're waiting to come off benefits and start work?!<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com5tag:blogger.com,1999:blog-34940564.post-72425596524156128792014-02-23T10:59:00.002+00:002014-02-23T10:59:56.053+00:00The 'Scrounging Scum' to 'hard working, tax credit claiming, socially acceptable scrounging' journeyFirst published on Disability Now - <a href="http://www.disabilitynow.org.uk/article/atw-denying-access-work" target="_blank">AtW: Denying Access to Work</a><br />
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With government rhetoric stressing their keenness to get more disabled people into work you might think that their scheme to support disabled people in employment would be an example of well-oiled machinery.</div>
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<strong>But when, having got a job, Kaliya Franklin set about getting the support she needs, what she encountered was a confused tangle of red tape and bureaucracy.</strong></div>
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I’m very, very lucky to have a potential job with an employer who is willing to bend over backwards to accommodate my fluctuating and unstable condition. Work from home? No problem. Work from bed? No problem either. it’s like the holy grail for people with a fluctuating condition.</div>
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Naively we thought that Access To work (ATW) would be a rapid, streamlined process providing all the support we would need to make this unusual employment situation workable.</div>
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Access to work is one of the few major success stories in relation to government spending – for each £1 spent by ATW, the treasury gets back £1.48 in income tax and national insurance. It has also been described as the DWP’s best kept secret. Employees and employers like the scheme, but given that the number of ‘new starts’ has been falling since 2010, is Access to work actually helping people to access work?</div>
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ATW is intended to provide the support an individual needs to carry out their job, whether that support be in the form of equipment, accessible transport or a support worker. Recently there have been various changes to the provisions ATW can make and in what circumstances. With classic timing, I applied for support just as these changes were taking effect. I wanted to be sure my package was in place and would provide the support I needed before starting work.</div>
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That was a wiser decision than I realised – it took 4 weeks for the ‘equipment assessment’ to happen and now, some 5 weeks on from applying I have yet to hear what equipment I’ll be granted and whether I have managed to fit within the strange and complex flow chart now used by ATW staff to decide whether someone is allowed support worker hours. Funnily enough, I’ve also yet to start work. Oh, and I can’t tell my employer when I might be starting because I don’t know when ATW will be set up…the best I have is a vague ‘if you haven’t heard in another 10 days call us’.</div>
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So far my experience has been disheartening and stressful as well as confusing. ATW is working to updated DWP guidance which limits both the equipment they now provide and introduces a 20% limit to the amount of support worker hours permitted. Each advisor I’ve spoken to at Atw has been consistent in their advice – I can only have a maximum allowance of 20% of my hours worked in support worker hours. However, when I finally managed to track down that official guidance I found the advice given to me by multiple staff members to be wrong. The support I need falls into the category of ‘life skills’ – this means access skills to enable me to carry out a whole task – things like someone to scan documents for me, take me to the post office, or support me when I have to attend meetings elsewhere. The support worker won’t be doing my job, I will, but without that support I may not be able to carry out the job. The official guidance is clear – ‘life skills’ are an enabling support which is a conduit to being able to do the job, and the funding is supposed to be available for as much of this support as an employee needs.</div>
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So, not only am I still waiting to hear what equipment I may receive, but also to find out if I can have the 20% proportion of hours worked in support worker hours, even though this is in direct contradiction to the official written guidance.</div>
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I mentioned I was lucky to have an understanding employer committed to making the adjustments I need. With a 5 week delay in starting work, and no idea when the actual support offered might be in place, let alone whether that support will be sufficient, it really is fortunate. I can’t imagine a supermarket waiting for someone to start a shelf stacking role would be quite so flexible. Why would they be when there are hundreds of candidates for every job who are able to start immediately?</div>
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As for me, I’m 5 weeks into the process and far more disheartened than when I started. It’s impossible to plan properly without knowing what and how much support I’m entitled to. It’s impossible to start work without that entitlement. So, I’m still on benefits. Not in the job that’s mine. I’m far less confident about succeeding in employment than I was to begin with. Access to work should be the stable part of my support, not an additional challenge and barrier to employment.</div>
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com2tag:blogger.com,1999:blog-34940564.post-56638236052692589552014-01-05T11:22:00.000+00:002014-01-05T11:22:00.299+00:00'Let's Talk About Sex!'Speeches from H&SA 'ordinary lives' <a href="https://www.housingandsupport.org.uk/2013-annual-conference" target="_blank">conference</a> - relationships, trust and 'who do you ask to help you buy an accessible sex toy?!'<br />
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<iframe allowfullscreen="" frameborder="0" height="281" mozallowfullscreen="" src="//player.vimeo.com/video/82283989" webkitallowfullscreen="" width="500"></iframe> <a href="http://vimeo.com/82283989">H&SA Annual conference : Kaliya Franklin and Linnet Macintyre</a> from <a href="http://vimeo.com/user14415456">Housing Support Alliance</a> on <a href="https://vimeo.com/">Vimeo</a>.<br />
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<a href="http://vimeo.com/82283989">H&SA Annual conference : Kaliya Franklin and Linnet Macintyre</a> from <a href="http://vimeo.com/user14415456">Housing Support Alliance</a> on <a href="https://vimeo.com/">Vimeo</a>.<br />
<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0tag:blogger.com,1999:blog-34940564.post-71343956248227006592013-12-09T09:56:00.001+00:002013-12-09T09:56:54.813+00:00Politics, Policy and Persecution - The People's Review of the WCA - Further Evidence It is clear that the Work Capability Assessment (WCA) has been a source of great misery and distress to many sick and disabled people, but there has never been an entirely satisfactory explanation for why this is happening. The finger of blame has been pointed at the outsourcing contractor Atos Healthcare, the influence of the insurance industry on the development of the test, the frontline assessors, the claimants - if you can think of it, at some point someone's blamed it.<br />
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Whilst the existence of targets are vehemently denied by politician's, civil servants, the DWP and Atos, the misuse of statistical norms as outlined in my latest report '<a href="http://www.centreforwelfarereform.org/library/type/pdfs/how-norms-become-targets.html" target="_blank">Investigating the real reason for the misery of fit for work assessments</a>', published by the Centre for Welfare Reform, means there is a de facto target system in place which limits the overall proportion of successful claims.<br />
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Statistical norms are somewhat dry and dull, especially to someone like me who runs out of numbers when they run out of fingers and toes, but I have spent the best part of the last three years obsessed by this misuse of norms, researching and investigating how such a system could operate and why it would be denied by politicians of all parties.<br />
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Over that time period I have asked everyone I've met about norms - politicians, private sector employess, Atos assessors, GP's, everyone. I'd ask people I bumped into in corridors at conferences, I'd randomly phone up people I thought might hold other pieces of the puzzle and ask them to talk to me. The more I asked and the more I understood, it became clear that those denying the existence of targets often didn't understand what norms were, didn't know they existed or just didn't understand. There was one consistency though - everytime I explained how I thought the norms were being abused to cap the overall number of claims - the colour would drain from the face of the listener, they'd become very quiet, and some would mumble things like 'oh shit'. Once explained, it was obvious to them how statistical norms were being abused to drive the overall proportion of successful claims.<br />
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On paper, this seems quite a simple process, with only one consistent figure involved in the process throughout it's five years - Lord Freud. So determined was he to remove two thirds of incapacity benefit claimants, Lord Freud only needed three weeks to write his report recommending just that. In that time the government has changed, all three political parties have had a taste of power, and the misery caused by the WCA has continued. But only Lord Freud has remained consistent - civil servants have changed, staff at Atos have changed, yet Freud continues, so determined to push through his scheme, and complete the transfer of the human beings he refers to as 'stock', that he even changed political party.<br />
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The misuse of statistical norms is dry, technical stuff. It's vital to understand because it acts as the driver of the whole system, the cause of all that human pain and misery. Today, a new report is released by an anonymous author, too sick and too scared of the consequences to be identified. Despite all that, this author has also dedicated years to understanding the misery of the WCA - for them the focus was on the human stories of suffering.<br />
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<a href="http://wearespartacus.org.uk/wp-content/uploads/2013/12/Peoples-Review-of-the-WCA-Further-Evidence-December-2013-final.pdf" target="_blank">The People's Review of the WCA - Further Evidence</a> gives the people who have suffered as a result of Freud's scheme to cap the overall number of claims the opportunity to speak in their own voices of the damage such a blunt system has done to them and their families. <br />
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There are many people I need to thank for their assistance whilst I was researching 'norms', and many of those people cannot be named due to the vulnerable position they put themselves into by whistleblowing. So, this is a mass thank you - to everyone who had to endure my 'norms' related questioning and also to the anonymous author of The People's Review who has been determined to give the voiceless a voice.<br />
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The evidence is clear - 'norms' are misused to drive the system to the desired result, ie limiting the overall number of claims. The impact is also clear, the media regularly feature accounts of terrible WCA decisions, and politicians scrabble to justify the worst cases as 'mistakes'.<br />
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And there is the true horror of the WCA - none of this was a mistake. All the pain, fear and stress experienced by people like <a href="http://benefitscroungingscum.blogspot.co.uk/2012/06/karen-sherlock-ordinary-woman-in.html" target="_blank">Karen Sherlock</a>, and the many, many examples in The People's Review are written off by polticians as 'mistakes'. But this is no mistake, the contractual terms for the operation of the WCA are clear - all solutions MUST be based around an imposed 'norm' for the Support Group of just 11%, rejecting claims for Employment and Support Allowance was <i><b>exactly</b></i> what Freud intended to happen. <br />
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All that pain, all that fear, all that waste - not mistakes at all, but the exact result desired by Freud and achieved by the artificial imposition of 'norms'. <div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com1tag:blogger.com,1999:blog-34940564.post-70201271675433459792013-12-03T14:59:00.000+00:002013-12-03T14:59:05.655+00:00Leaked Evidence Shows DWP Set Quotas For 'Fit For Work' Assessments Why are so many sick and disabled people being failed by the Work Capability Assessment and who is to blame? <br />
<br /><b>1. The contract between DWP and Atos Healthcare specifies all costs and solutions MUST be based around an artificially imposed ‘statistical norm’ for the Support Group of 11% (which has since been allowed to rise slightly). This ‘gears’ the whole WCA system to deliver that ‘desired result’.<br />2. The manner in which the audit system is used within Atos Healthcare, including whistle-blower evidence of ‘punitive auditing’, means there is insufficient latitude for assessors to freely use their professional judgement about an individual’s true fitness for work. </b><br />
<br />The Work Capability Assessment (WCA), used to determine eligibility for Employment and Support Allowance (ESA), which replaces Incapacity Benefit, has been dogged with problems since its inception. Department for Work and Pensions (DWP) ministers and Atos have always denied the existence of ‘targets’ for the WCA. Now, for the first time, evidence is presented that the WCA operates to a norm-referenced system. This is a de facto target system, since when ‘statistical norms’ are applied to a process such as the WCA they deliver the same outcome as targets. As Lord Boswell predicted in 2007, this use of statistical norms means <a href="http://www.publications.parliament.uk/pa/cm200607/cmhansrd/cm070109/debtext/70109-0006.htm" target="_blank">"the test will, in effect, be geared to deliver that [desired] result”.</a> Being able to consistently deny the existence of any targets has been crucial both for the Labour government who introduced the WCA, and the Conservative/Liberal Democrat Coalition government who have continued with its use despite evidence of significant faults in the process.<br />
<br />The media regularly feature stories of people even the Daily Mail would consider deserving of ESA who have been refused the benefit – people with sickness or disabilities as diverse as Huntington’s Disease, uncontrolled epilepsy, kidney failure or brittle bone disease - but until now there has been no completely satisfactory explanation for this misery and hardship.<br />
<br />Ministers, MPs, the DWP and campaigners point the finger at Atos, the company contracted to carry out these tests on behalf of the DWP. The DWP say Atos are at fault and that they will improve the system by breaking their monopoly and allowing other companies to bid for the contract. Labour have also announced that they will “sack Atos”. DWP ministers blame the civil servants and the civil servants seethe. It is a classic case of political, “it wasn’t me Miss, it was them”.<br />
<br />To explain what all this really means education analogies are helpful. Exams can be either ‘norm-referenced’, ‘criterion-referenced’ or a mix of both. A criterion-referenced exam system means students receive an objective grade based on their performance against a pre-defined marking scheme. A norm-referenced exam system sets ‘quotas’ which limit the overall proportion of students able to achieve each grade.<br />
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<a href="http://www.publications.parliament.uk/pa/cm200203/cmselect/cmeduski/153/15304.htm" target="_blank">Originally ‘A’ levels were simply pass or fail, but in 1963 guidance was issued which limited the overall proportion of students allowed to receive each grade</a>. This was a norm-referenced system which ensured that only a small proportion of students could achieve ‘A’ grades. This was widely perceived as unfair to students and during the 1980’s ‘A’ level marking systems were changed to remove quotas.<br />
<br />The audit system as controlled by the DWP can be seen as a teacher, and Atos the poorly performing pupil. The teacher punishes the pupil, focusing on reprimanding him when he smudges his ink (deviates from the ‘norms’ imposed in the contract) whilst ignoring the content of his answers or his behaviour. The teacher blames the pupil for not learning and the pupil blames the teacher for everything. Before anyone should feel too sorry for the pupil, it’s important to note, this pupil is more Harry Flashman than Harry Potter; the real victims are those affected by their combined bad behaviour.<br />
<br />The test for the old Incapacity Benefit - the Personal Capability Assessment - was a criterion-based system. People were awarded points based upon how they scored against certain criteria – for example, those who could walk less than 50 metres were awarded more points than those who could walk less than 200 metres. If the person scored the number of points, across all the criteria, necessary for benefit receipt, they would be entitled to the benefit.<br />
<br />However, the WCA is a norm-referenced system. People must <b>both</b> score the number of points required for benefit receipt <b>and</b> fall within the proportion of people the norms system will allow to receive the benefit. In practice this means there is a finite number of claimants the assessment system will allow to be awarded the benefit, regardless of the number of people who objectively meet the criteria for benefit eligibility. <br />
<br />New evidence gleaned from the original contract between Atos and DWP, testimony from Atos employees and Freedom of Information requests, clearly indicates that the outcomes for individual sick and disabled ESA claimants are not driven solely by the severity of their condition or the nature of their disability. On the contrary, as Lord Boswell warned in 2007, the imposition of statistical norms onto the WCA gears the outcome of the whole system to achieve the desired result: in effect a cap on the overall number of people the system will permit to be granted eligibility for ESA. <br />
<br />Evidence shows that Atos uses a ‘management information tool’, based on the ‘statistical norms’, to ‘manage’ the behaviour of individual assessors. Although officially the audit of assessments is not supposed to be punitive, it’s clear from whistle-blowers that in many regions there are negative consequences for assessors if they do not restrict the number of points they award to claimants to comply with the norms. This makes it difficult, for example, for them to award a high point score to every claimant who, in their clinical judgement, has a serious condition affecting their ability to work.<br />
<br />There is therefore a serious risk that the overall outcome for the claimant – whether they are placed in the Support Group and given unconditional support because they are unable to work, placed in the Work Related Activity Group on the basis that they are likely to be able to return to work in the future, or denied ESA altogether and expected to actively seek employment – may be driven as much by the severity of other claimants’ conditions as their own, particularly those claimants assessed on the same day by the same assessor! <br />
<br />So is removing Atos actually a solution to the problems with the WCA? The answer is no. As long as the WCA remains a norm-referenced system of assessment, removing Atos is the political equivalent of fiddling while Rome burns. <br />
<br />It is clear, and in the light of this evidence totally unsurprising, that this iniquitous system is causing immense distress, hardship and increased ill-health for the very people who most need support, whilst at the same time costing the taxpayer many millions of pounds in unnecessary assessments and appeals. <br />
<br />This evidence and analysis must be understood by politicians of all parties, since only a cross party solution can fix this cruel, wasteful, immoral system and prevent more unnecessary suffering. If sick and disabled people are to receive the support they need - and which a civilised, compassionate Western society is expected to provide - this new report, published by The Centre for Welfare Reform, <a href="http://www.centreforwelfarereform.org/library/type/pdfs/how-norms-become-targets.html" target="_blank">"Investigating the real reason for the misery of 'fit for work' assessments"</a>, is essential reading for both Parliamentarians and the public alike.<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com7tag:blogger.com,1999:blog-34940564.post-4022303564291544702013-11-08T10:09:00.000+00:002013-11-08T10:09:21.975+00:00Meeting Michael We sat facing each other, loosely holding hands, cocooned by the strange aucoustics in the room. The buzz of noise wrapped around us, creating the kind of privacy those who lived their lives in full view of the Dilke's* were used to grabbing wherever they could. We sheltered what we said from those further away, words difficult to hear, harder still to speak, with meaning so very clear.<br />
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The <a href="http://www.postcardsfromtheedges.org.uk/" target="_blank">postcard</a> written from the heart upon arrival told just the basics of decades of pain;<br />
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<i>"They locked me away. There was no-one to tell. They tied us to beds. I fought and fought. 4 people went to prison. Now I have a job, I'm an advocate and I'm happy" </i><br />
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But in our bubble we talked more. I listened to a story told many times before. I witnessed the strength gained each time as the words let out the pain trapped inside.<br />
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<i>"They marched us in lines. Naked. Not just boys. Grown men too. Completely naked. All together"</i><br />
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Tears rolled down all our cheeks as we huddled together.<br />
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<i>"Every day you got raped. There was no-one to tell. They didn't care. They raped you too so you couldn't tell."</i><br />
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We held a hand of his each, two of us, women with different disabilities, too young to have lived through the terror of institutions<i>. </i>Filled with awe by his strength, this intelligent, articulate man who had fought and fought. For himself but for us too. To ensure our futures would not be destroyed by the pains of his past.<br />
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Thank you Michael. We will never forget you or the battles you fought.<br />
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* Dilke is a derogatory word for those who staffed institutions used in the novel <a href="http://www.amazon.co.uk/Skallagrigg-William-Horwood/dp/0140072063" target="_blank">Skallagrigg </a><br />
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0tag:blogger.com,1999:blog-34940564.post-9520314505347580292013-10-07T09:12:00.000+01:002013-10-07T09:12:15.537+01:00Conference Diary - Conservative Conference Day 3 #cpc13Tuesday morning dawned bright, early and with the traditional spoonie greeting of being run over by a bus in the night. The desire to flee home to a comfy memory foam bed and not have to sit on a scooter dislocating all day seemed overwhelming. As did the need to know who my 10am meeting was, as foolishy I forgot to write down anything but the time. <br />
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Despite phoning a taxi 3 times it did not arrive. Finally manage to flag down taxi in 'oh god I'm late for the meeting' panic. Taxi driver helps load scooter and off we go. Taxi driver gets stopped by the police.<br />
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Finally arrive late at conference to see huge mass of protesters and queue to get through security. Whimper pathetically about having to scoot through such a crowd at waist height. Decide only way to ask nice policemen to help. Fortunately nice policemen decide to escort me through security while I whimpered some more about the crowd. G4S appeared slightly non plussed by my appearing with a police escort who politely requested they look after me but me & the pink pliers made it through intact. Just.<br />
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The best random conference meetings always happen by chatting to random smokers. Had a good chat with nice chap from the big Christian media company in the UK. Compared notes - neither of us could remember the bit in the bible where Jesus urged blaming the poor for everything. Nice Christian smoking man went off looking very troubled.<br />
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More smoking with lovely lady who turned out to be Jake Berry MP's assistant. Lovely lady sorted us a quick chat with Jake about disability stuff and housing. Had a moan about the shortfall between Local Housing Allowance and actual rent. Concerned MP said 'but you should be getting a DHP, they're for people like you'. Pointed out applying for DHP's utterly degrading and short term. No answer to that beyond 'oh dear'.<br />
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Met very jolly posh Tory, just out of schoolboy who explained to us his role was to be able to talk to 'normal' people. What a poppet. Still being drunk at 11am probs a good start with the 'normals' but more likely to find those on a bus than inside secure zone. He'll probly be PM in 20 years.<br />
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Went back to try and find Conservative Disability Group man. Jacket in evidence, no sign of man but nice Conservative Friends of Sri Lanka man came over to chat. Went back to see Conservative Friends of Azherbijan. Got invited to very posh, very past bedtime party. They remembered me from last year so filled a bag with goodies for BendyNiece.<br />
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Got invited to unlisted fringe - George Osborne in conversation with Gary Gibbons. Quite interesting really and fortunately my jaw was glued together with the sweets the Wheelchair Evacuator people gave me so I couldn't make inappropriate comments. Fringe ended, scrum of people headed to try and meet the Chancellor. Took the 'sod it, they can only say no' option that has served all campaigners so well and headed into scrum. On scooter. At crotch height. Ick.<br />
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After being pushed in front of by another queuer I was rather surprised when the Chancellor looked over and made eye contact with me saying 'I've seen you, stay there, don't move I'll come over to you'. How can a man who's mother worked for amnesty and who can spot a distressed disabled behind a scrum of overexcited Tories not see what his government are doing to said disableds? These are the toughest moments at conference - how can these people who are so polite, so helpful and so friendly to our faces not understand what we're saying to them?<br />
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<tr><td class="tr-caption" style="text-align: center;">Chancellor George Osborne stands and talks to Kaliya Franklin sitting on her scooter</td></tr>
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So, we shook hands and I asked if he could spare me some time to discuss welfare, disability and employment. The Chancellor said he would make time to meet and discuss it properly, so having had lots of photos taken his SpAd and I exchanged details and off we both went.<br />
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After that the plan was to go to head back to the JRF tent for a rest and then go to more fringes. The plan worked as far as the JRF tent and a lie down with a blankie. After about 10 minutes I realised if I didn't leave NOW I was going to throw up all over the JRF tent...which seemed no way to repay their hospitality.<br />
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Scooting and dizziness don't mix. Nice policemen will approach you to see if you're drunk. Slurred speech doesn't help this impression. Tears ensued. Finally managed to find a cab and get back to the hotel to become horizontal.<br />
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I wonder if I'll get that meeting the Chancellor promised... <br />
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com1tag:blogger.com,1999:blog-34940564.post-67780085939363862772013-10-04T12:06:00.000+01:002013-10-04T12:06:47.516+01:00Conference Diary - Conservative Conference Day 2 #cpc13<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNRthSFD3vaC0Q6KBpPj7W_6B4k3zF4_KbIfi9EPwpJ5GxdvGn9hi4_qur0aH87AItqCQXbXqpoBtmrNb34HCUT-BwSvoE6iZ7Ipfvjn3GBZbQf59Pc4_2pxyqA8u6okH7ow-/s1600/Beth+and+Kali+Day+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNRthSFD3vaC0Q6KBpPj7W_6B4k3zF4_KbIfi9EPwpJ5GxdvGn9hi4_qur0aH87AItqCQXbXqpoBtmrNb34HCUT-BwSvoE6iZ7Ipfvjn3GBZbQf59Pc4_2pxyqA8u6okH7ow-/s320/Beth+and+Kali+Day+2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beth and Kali get made up ready for a day lobbying </td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Did I mention the tired? Goodness the tired! After a late night and serious lack of sleep we plastered on the slap ready to face the fray.<br />
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Arrived at conference and went through security. Lovely G4S security guard approached looking a tad nervous and said "Would you like to tell us why you've got a pair of pliers in your bag?" Apparently "because they're pink of course" is not an acceptable answer. I'd also advise not pointing out that due to epic crip issues you're unlikely to even be able to use said pliers but could do an awful lot of damage with the scooter. It makes even the friendliest of security guards a tad twitchy. Fortunately had the sense not to laugh and say "but you didn't find them yesterday, did you, eh, eh". Got through security still in possession of pliers offering biscuits as bribes.<br />
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Usual conference type chaos. Make a plan. Throw away plan when other things happen instead. Was supposed to debate workfare proposals with Christian Guy from Centre for Social Justice live on Sky News. Got briefed by lovely JRF people. Debate got cancelled. Cross journalist arranged a quick soundbitey thing. Apologies to anyone who saw it - I'd already had morphine!<br />
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Met a lovely delegate <a href="https://twitter.com/Meliden" target="_blank">@meliden</a> - we realised 5 minutes into the conversation that we'd been twitter pals for ages. Had some really good chats about disabled people, fluctuating conditions and employment. <br />
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Went to Eurocopter stall and had our photos taken on their funky green screen. May have been so overexcited about the green screen and green cape that I scooted off clutching said photo with no idea you were supposed to pay for photos. Oops. Fortunately nice Eurocopter lobbyist told me they'd never seen anyone so excited over a green cape and were glad to give me the photo for free. Phew.<br />
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Found Conservative Disability Group stand. Went back and back to CDG stand. No-one there except the 'make disability bearable' bears. In the spirit of 'free our people' we freed the bear and brought him home.<br />
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<tr><td class="tr-caption" style="text-align: center;">'Make disability bearable' bear working hard on his new life as an oramorph addicted scrounger</td></tr>
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Talked to lots of backbench Conservative MP's about disability, welfare and employment. Met lovely young chap from Conservative Future who wanted to support what we were saying on disability. Really supportive conversations with Eleanor Laing MP, Charlotte Leslie MP and Richard Graham MP and lots of delegates.<br />
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Discovered the '<a href="http://www.wheelchair-evacuator.com/" target="_blank">wheelchair evacuator</a>' guys. Incredible invention to be able to quickly attach the handles to any manual wheelchair and safely evacuate in an emergency. Especially clever as it keeps the attendant's back straight and is very affordable (£300-400) It is a wee bit bumpy, especially when the triathlete pushing you decides to run full pelt down the steps but it was good to know it doubles as an accessible roller coaster! Given the choice between bumping and burning I'm all about the bumping!<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/V_uvIT0ohNI" width="420"></iframe><br />
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Nearly got thrown out by security guard when Wheelchair evacuator man ran full pelt through the main conference hall lobby and several Tories had to jump out of the way. Beautiful moment<br />
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Managed to leave conference with enough spoons intact not to vomit but not enough to make it to dinner. Fortunately the amazing @fibro_girl and her lovely PA Trish were there and could bring some food back to the room. We spoonies got our jammies on and laughed/bemoaned our inability to attend the really posh party we'd been invited to on the grounds that 9pm was way too far past bedtime. <br />
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0tag:blogger.com,1999:blog-34940564.post-42517066323896993642013-10-04T10:46:00.001+01:002013-10-04T10:46:03.659+01:00Conference Diary - Conservative Conference Day 1 #cpc13<span class="userContent" data-ft="{"tn":"K"}">Despite military level planning on time to arrive, time to eat, time to nap it all went a bit wrong once we got to Manchester. Diversions, directions & protestors everywhere. Multiple sets of directions from traffic police later Lovely PA and I realised there was no way to drive to the hotel. Decided only answer was pile me in a taxi and get to hotel that way. Taxi driver's grasp of the English language was better than my grasp of Arabic...but frankly probably a close call. Still despite all that he got me where I needed to be and was kind and helpful. </span><br />
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<span class="userContent" data-ft="{"tn":"K"}">Got more stressful when arrived in hotel to be put on the 12th floor,
furthest from lift, no idea where the stairs were or if the hotel even had an evacuation plan. If they did they weren't communicating that to their guests. Became slightly hysterical. Hotel
moved me to 6th floor. Neither room accessible. Still no evac plan. Hotel staff really puzzled by my distress as after all "the accessible room is available for you tomorrow night"</span><br />
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<span class="userContent" data-ft="{"tn":"K"}">Became completely hysterical & fled to rescue by lovely <a data-hovercard="/ajax/hovercard/user.php?id=570992032&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/Beth.GregsonAllcott?directed_target_id=0">Beth Gerg</a> to share her room in accessible Travelodge. Yeay Travelod<span class="text_exposed_show">ge.
Boo stupid posh inaccessible, 'burn to death PTSD' hotel. </span></span><br />
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Disability and Employment fringe went well, very good attendance, quite a few delegates there along with the usual charity representatives. Brilliantly chaired by Isabel Hardman from the Spectator and Telegraph and the panel was Jaspal Dhani, Stef Benstead, Esther McVey, Ralph and myself.</span></span><br />
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Slight disagreement with minister over 10 points PIP issue. No-one in
room any the wiser after endless 'but is that what you intended or not', 'well is it a typo then?'
discussion.</span></span><br />
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Cripcarded Anne widdicome on way out of the fringe. I feel confident sharing with you that she is not a scrounger fan. She
did agree to put in a good word for disableds though.</span></span><br />
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Finally got to restaurant at nearly 10pm. Fled restaurant as
food arrived coinciding with onset of sweating/shaking. Its generally best to avoid embarrassing puke in public moment. So, a
typically uneventful conference day 1 then. Can't wait for Osborne's
'stand up to the weak' speech tomorrow...</span></span><br />
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<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0tag:blogger.com,1999:blog-34940564.post-9390805807002785892013-09-02T10:44:00.000+01:002013-09-02T10:44:22.008+01:00When drinking wine at sunset in a 'no alcohol zone' its important to remember...Wear pyjamas for that true 'Little Britain' effect... <div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Photo shows BendyGirl sat in an attendant wheelchair holding a glass of wine with a pink, purple and blue sunset in the background</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Photo shows BendyGirl sat in a wheelchair holding a glass of wine, dressed in pyjamas</td></tr>
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com3tag:blogger.com,1999:blog-34940564.post-50653561763856165602013-08-19T20:36:00.000+01:002013-08-19T20:36:56.786+01:00Pour me something stronger #wcaThe beauty of tonight's sky is such a sharp contrast to the sadness in my soul. How did we get here? When did it happen that the Britain we thought we knew slipped away, subtly shaded by something darker, more sinister and so frighteningly real?<br />
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Tonight I made a promise, a promise I was so saddened but not at all shocked to hear asked, a promise I hope very much never to have to keep, but a promise all the same. I had to promise that if anything should happen to one of the most courageous survivors any of us can imagine that I would make sure everyone knew who is responsible.<br />
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But, most of us? We already know, and even those who don't are beginning to shuffle with disquiet. We look away, those of us safe enough, secure enough to have enough. We look away so as not to have to face the fear that we are all innately vulnerable and that a need for social security does not make us lesser, or other, but fundamentally human. '<br />
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And whilst we all look away, I broke my heart listening to another seriously ill person being broken in the name of welfare reform. And I made the only promise I could - that if it ever comes to it I will make sure everyone knows who's responsible,<div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com6tag:blogger.com,1999:blog-34940564.post-1410465448459980842013-08-07T10:58:00.000+01:002013-08-07T10:58:47.781+01:00Rosemary's Baby? Inside The Ethics Committee, Radio 4 8/8/2013 9am #eds <br />
Last month I went to London to record '<a href="http://www.bbc.co.uk/programmes/b037vb3f" target="_blank">Inside The Ethics Committee</a>' for Radio 4, hosted by Joan Bakewell. It was as ever a vomit themed and fascinating experience - I'm told 'Can I have a vomit bowl just in case please' is one of the more unusual studio requests!<br />
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As I've already been asked, I'd like to clarify - I'm not the case study Rosemary and I'm not pregnant! However, Rosemary and I are almost the same age and we both have EDS - this meant I felt a huge sense of responsibility to Rosemary when we were making the programme - I didn't necessarily think the decisions Rosemary was making were always the decisions I would make for myself but I did feel it was vital to defend her right to make those decisions for herself, whatever they might be.<br />
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The subject of assisted conception, parenting and disability is obviously complex and sensitive, but I hadn't expected this to be the most challenging media recording I'd ever done...which is entirely my own fault for not thinking things through before I say yes to them! I am glad I said yes without thinking though as it was also one of the most constructive and interesting discussions I've ever participated in - having an all female panel and host definitely helped that. There was simply no-one looking for any kind of conflict but to explore with each other the different issues and potential consequences.<br />
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It was also fascinating to consider Rosemary's case from within a social model perspective - I talked to lots of disabled people to get their perspectives before hand, but after much deliberation and many lengthy conversations we all agreed that it simply wasn't possible to fully apply the social model (the theory that disability is caused by an inaccessible world rather than an inherent medical model impairment) to Rosemary's situation because she has some life threatening medical issues that simply won't work within a social model framework.The social model applied in some places very effectively and up to a certain point which always ended in 'but there are no barriers we can remove to ensure her participation without actually killing her' and frankly most of us were unsure that was a terribly social model solution to the situation..<br />
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As so many people use this blog as a place to find information about Ehlers Danlos Syndrome I think its really important to point out that for most women with EDS pregnancy does not present the same level of risk as it does to Rosemary due to her <a href="http://en.wikipedia.org/wiki/Iatrogenesis" target="_blank">iatrogenic</a>* complications.There is lots of helpful information about <a href="http://hypermobility.org/help-advice/pregnancy/" target="_blank">HMS or EDS and pregnancy</a> on the Hypermobility Syndromes Association website. <br />
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I'm really looking forward to hearing the finished debate - that's totally different from participating in it! I hope the intricacies we all considered come across and demonstrate just what a difficult job ethics committees in these situations do...and makes the various ethics committees realise that if they are assessing ethics related to disability in relation to clinical decisions that they should never do so without including disabled people as part of that ethical panel.<br />
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When listening please bear in mind that Rosemary is a real person, the discussion is about her real experiences and challenges and please be mindful in any comments that Rosemary herself may read what you are saying. <br />
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<a href="http://www.bbc.co.uk/programmes/b007xbtd" target="_blank">Inside The Ethics Committee</a> airs Thursday 8th August on BBC Radio 4 at 9am. It'll be repeated and available afterwards on iplayer - I'm not sure how long the transcript versions take but all the older episodes have transcripts available so they will appear. For those outside the UK who wish to listen it might be worth contacting Radio 4 to ask if they have any plans to put the series onto the World Service. <br />
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*Interestingly iatrogenic is not a Radio 4 approved word - too difficult. Though to be fair that could well be BBC code for 'you can't pronounce it love so don't say it eh'! <div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com5tag:blogger.com,1999:blog-34940564.post-60549075897483297662013-07-17T10:30:00.000+01:002013-07-17T10:30:54.102+01:002 wheelie women, 1 wheelie space #nogobritain It used to be so easy writing a blog about living with disability - people do funny or silly stuff, write it up, other people read it and laugh or gasp at said silly stuff, job done. I was always careful, just in case someone recognised themselves in the pieces I wrote, and when I lost my anonymity I removed lots of old posts as it wasn't fair to have written about people who had no right of reply. So that's why, since the blog-worthy incident on Saturday I've been wondering how I can write it up honestly when some of that honesty is about people who may read this having behaved badly? It seems the only way is to be considerate but speak the truth.<br />
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It all went really smoothly initially - I know the Lime Street assistance staff and they know me, ensuring I'm on the train with no problems - just like any other journey to London. I'd booked my tickets early, reserved the wheelchair space and the seat opposite so I can transfer out of my uncomfortable scooter. I'd even, unusually for Virgin Journey Care received an email confirming that I'd booked that particular wheelchair space and seat. So, when a lady of about my age arrived on the train just moments before departure it was obvious something had gone wrong.<br />
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And it had, we'd both booked the same seats. Instead of informing the lady that the seats were already booked when she rang journey care someone simply left my reservation on the wheelchair space and added her PA's to the additional seats. That meant I was booked in, the PA's (her husband and an employed PA) were booked in but the lady using the powerchair was not.<br />
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The whole carriage was busy and two women using mobility equipment plus one set of rather pissed off carers meant we were attracting alot of attention. It was immediately obvious that the other lady had to have the wheelchair space - she was a powerchair user who couldn't transfer into another seat whereas I can. It was also obvious that if we didn't figure out a solution quickly between us all that the train would need to leave and we'd be put off the train. The train staff did their best to sort it out, as did I and the other wheelie using lady but the attitude of the people with her, whilst totally understandable was unacceptable and left me feeling really vulnerable and threatened. Had GG who usually puts me on the train been there, there would have been a full on fist fight given the attitude of the other carer's - neither GG nor the other lady's husband were the type of men to back down and neither of us would have managed to control protection fuelled testosterone fury. So, intimidating and upsetting though it was to be on my own, it was probably better that way.<br />
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The most infuriating part of the whole situation was that the other lady and I had immediately started to work out between us how we could share the available space - she had to have the wheelie space, there was no question, but fortunately as we were both very petite we could just about manage to re-arrange so that she had room to turn round, and we could squeeze in my scooter so that people could pass. The only reason we were able to do this was because it was a weekend and there were no catering trollies needing to get through - people could pass but on a weekday one of us would have been put off the train.<br />
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However, the lady's companions were having none of this 'we'll share' plan which the other lady seemed as ok with as I was. The people in the seats immediately behind offered to move, but the PA's were still cross and wanted to insist I was in their seats and had to move. The other lady had already seen the confirmation email I showed her and knew it was a genuine mistake but the other's acted like I was just one of those people who sit in a wheelchair space and refuse to move.<br />
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Things culminated when the PA said to me "I'm not being funny, but you can walk a bit and xxxx can't walk at all, so you have to move" Having exchanged horrified glances with the other wheelchair user I managed to calmly but firmly reply that I was on my own with no support and couldn't move further from the toilet, whilst they were two people to support the other wheelchair user and that it was not a competition as to who was more disabled, but that there was no reason the two of us couldn't share the wheelchair table and the PA's sit immediately behind us. I'd checked with the other lady that she did not have to have her PA's immediately next to her and she was quite happy to share the table with me with her PA's immediately behind me in her line of sight.<br />
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The train moved off and that settled things - she got the space, we got my scooter moved and for the rest of the journey she and I had a really nice chat while her companions continued to glower. It was stressful, upsetting and degrading for us both, but additionally for me, enormously intimidating. I understand the attitude of her companions, I've seen a similar attitude occasionally amongst some of my friends when access has failed and the general public are being deliberately unhelpful, but this was slightly different - I was a disabled woman on my own and of all people I sort of expect other disabled people and their staff to understand. The other disabled lady and I understood each other perfectly, but for some reason her companions thought it was acceptable to be aggressive and intimidating not just to a woman alone, but another disabled person.<br />
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Given the potential for the other people involved to read this blog post I can't take the easy route, call them wankers and be dismissive of their viewpoints. So, instead I'll just say to all PA's, carer's, family or friends of disabled people - please bear in mind the affect of your actions on other disabled people, not just the one you are with. We all understand the frustration, we all live with it, so that means that of all people we should treat each other with that compassion and understanding, not go off like a bottle of pop at the first hint of a problem!<br />
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<br /><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com8tag:blogger.com,1999:blog-34940564.post-85604718113094337442013-07-16T10:23:00.000+01:002013-07-16T10:23:42.748+01:00Inside The Ethics Committee - August 8th, 9am #eds A couple of weeks ago I went to London to record 'Inside The Ethics Committee' for BBC Radio 4. The panel discussion was all about the ethical dilemmas in an anonymised but real life case of a lady called Rosemary who has Ehlers Danlos Syndrome and wants a baby.<br />
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It was a fascinating and challenging experience which hopefully will come across in the 45 minute discussion hosted by Joan Bakewell.<br />
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Inside The Ethics Committee airs on the 8th of August at 9am and will be available after that on iplayer<a href="http://www.bbc.co.uk/programmes/b007xbtd" target="_blank"> here </a><div class="blogger-post-footer">Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.</div>BenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.com0