This has been a very busy week in terms of disability news, and all go for The Broken of Britain as well. The only problem with a net-based campaign is that you don't get the same rush of fulfillment as when campaigning in person, but there is satisfaction in knowing that The Broken of Britain have played a part in a number of developments this week. The most exciting news was this consultation response by the Social Security Advisory Committee. This represents a huge bloody nose for the Government.
This week the team at The Broken of Britain have been working away on plans for a new campaign. I can't reveal much more than this, but I can promise excitement - so keep an eye out in a few weeks! The news this week demonstrates that the Government's plans, on DLA and on ESA, are falling apart; that we are winning the battle for attention; and the new #TBofBTT Writers' Series has shown how keen disabled people are to get involved. Most of all, this week has shown that, with a little bit more pressure, we can win this!
Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends. Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
Friday, 25 February 2011
Thursday, 24 February 2011
Open Letter on Welfare Reform
Letter in The Guardian on the 24th of February, 2011, supported by The Broken of Britain.
Jon Cruddas MP Labour, Dagenham & Rainham,
Neil Coyle Director of policy, Disability Alliance,
Anna Healy Labour, House of Lords,
Gavin Hayes General secretary, Compass,
Professor Jonathan Rutherford Middlesex University,
Professor Peter Beresford Brunel University,
Steve Griffiths Researcher and Consultant,
Rhydian Fôn James The Broken of Britain,
Frances Kelly, Rosemary O’Neill Carerwatch,
Alison Wiles, Anna Kennedy, Carole Rutherford co-founders, Act Now – Autism Campaigners Together
The government’s implementation of welfare reform is destroying the covenant of care between disabled people and the welfare state (Report, 23 February). The most vulnerable people in our country are being subjected to cruelty. The work capability assessment is not fit for purpose. It is denying employment support allowance to those whom the 2007 Welfare Reform Act deemed it not reasonable to require to work.
The assessment lacks public and medical accountability. Criteria about what constitutes an “illness” and a “disability” have been increasingly narrowed over the years into a set of descriptors that fail to recognise the complex problems and needs of those who are mentally ill, or who have intermittent illnesses or communicative conditions.
We want a system that is flexible and supportive of disabled people and which helps people into good, appropriate jobs with decent wages. One that values and supports those who are unable to work, and that insures us all against the misfortunes of illness and disability.
Jon Cruddas MP Labour, Dagenham & Rainham,
Neil Coyle Director of policy, Disability Alliance,
Anna Healy Labour, House of Lords,
Gavin Hayes General secretary, Compass,
Professor Jonathan Rutherford Middlesex University,
Professor Peter Beresford Brunel University,
Steve Griffiths Researcher and Consultant,
Rhydian Fôn James The Broken of Britain,
Frances Kelly, Rosemary O’Neill Carerwatch,
Alison Wiles, Anna Kennedy, Carole Rutherford co-founders, Act Now – Autism Campaigners Together
Big Pawed Bear's Blog: Thoughts From The Den #TBofBTT
Now, you might ask why I use the image of a bear in my Twitter account (@BigPawedBear) and on my MSN Messenger picture.
I am a writer, work with horses, and help others if I can through use of the internet. I have also been active in the disability rights movement, helped by the Broken of Britain. Oh yes, I am blind too, I almost forgot that - well, actually, that's not true.
Every day I come across things which remind me of my blindness, from the computer I use, to the fact I can't get cash out of a cash point without help. "But why the bear?" you ask. Well, a bear, let's study this in more depth.
Is s bear cute, cuddly and gentle? Well yes they are, even wild bears are that. I am watching wild bears live on the net, as it were. More accurately, I'm reading text descriptions of what the wild bears are up to, as pictures are inaccessible to me.
Yes, bears are gentle to their own and to others too, if you get to know them, but anger them and disrespect their place and space, they become angry and are raging furies that you wouldn't want to meet. This is what the government are finding with the disabled community at the moment.
Disabled people have been seen by government for so long as meek, passive people, whose lives they can do with as they wish. This government has seen fit to treat them without respect by withdrawing benefits from them without meaningful consultation on what that withdrawal would mean for them.
For example, he government thought that the cut of high rate mobility component of the disability living allowance to those in residential care was an easy cut to make - how wrong they were. Stories have emerged of how those with disabilities use their mobility component of DLA to aid them in their daily lives, and how this cut will impoverish those in residential care.
As a blind person, recently eligible for the higher rate of mobility component, I feel strongly about this because I know now from personal experience how valuable that help will be when I get it. DLA is a small amount of money when compared to the costs of disability, but it gives disabled people the independence this government are supposedly committed to on one hand, while seemingly wishing to deny independence with the other.
This bear is fighting with all four paws and a roar to protect not only his own benefits, but the benefits of those who have no voice. Please read the ProjV hash tag on twitter to find out what people use their DLA for. In this wau, able-bodied people might get an insight into what disabled people's lives are like, and how DLA, though it might seem a lot of money, really isn't when coping with a disability.
Next time, I will blog about blindness and the costs involved. Paws up!
Big Pawed Bear
Wednesday, 23 February 2011
Big Night Out
Heather, who blogs at Oh Wheely... recently posted about what it takes for her to go on a night out with friends. She's had an interesting response and now plans to write some more posts showing what life with a disability is really like. She's given us permission to repost these here.
So, with military precision my 'going out' plans have swung into action. Whenever I have advance notice of a night out it goes something like this.
Up to one week before
Buy appropriate present and card and check there is enough wrapping paper - this time I bought the present a month ago and I'm quite excited to give it to her as I think it's lovely and I want it.
Check if I need to supply food or drink if it's at someone's house (fingers crossed no prep involved).
Ask boys to bring going out clothes down for me to peruse while OH is out (too stressful for him).
Cancel all plans for the following day in anticipation of dehydration headache.
Ring the venue to check on access and toilets and, even if I've been there before, worry anyway.
Forty eight hours before
Get whole outfit together as no guarantee anyone will remember (including me) on the day.
Worry about outfit.
Wrap present.
Buy food or drink if appropriate.
Worry some more about access and toilet facilities.
Worry about transport and which chair I can get away with (comfort vs weight).
Text friends for advice about access and ask for chaperones/pushers.
Twenty four hours before
Stop taking regular laxative and drink plenty in preparation for dehydration on the night.
Try to get hair washed and dried - not always possible as this depends on who is around or available.
Get a night bag connected so that I can fill up on water overnight to attempt to negate impending headache.
Spend the night making emergency plans to allow for lack of access and poor (or non-existent) toilet facilities.
On the morning of the day
Dress in the bottom layers of the outfit for that night - as I can't change without transferring back onto the bed and that would be a huge hassle - and hope that nothing gets spilled on them during the day.
Check shoes for tonight are clean and out where I can reach them.
Decide not to go as it's too much hassle for me and everyone else. then change my mind at least twice.
Four hours before
Stop drinking.
Stop eating.
Wear an apron if I'm still fairly clean.
Make sure children know I'm going out and where to contact me.
Text friends who've volunteered (hopefully) what time I need to be ready - reminds them not to forget me too.
Find volunteer to get coat out of cupboard if not already out.
One hour to go
Feel quite sick and sure that access and toilets will be cr*p and filled with surplus stock.
Use commode.
Change wet knickers and pad (not always these days - hurrah!)
Change top layer of clothes.
Get out bigger shoes as forgot feet would swell.
Take pills inc paracetamol as transferring.
Brush hair.
Do make up.
Have the last wee of the night.
Spray perfume to cover smell of urine.
Coat, scarf, gloves.
Handbag, present, food, drink, money.
Transfer into Slim (manual chair), if I have to, last thing as now immobile.
And go.
H x
The Coalition Gets A Bloody Nose On DLA
The Social Security Advisory Committee has echoed The Broken of Britain's concerns about the reform of Disability Living Allowance. The statutory body is questioning the motives for the proposed replacement of DLA with the Personal Independence Payment. This line of attack originated with The Broken of Britain and CarerWatch. The committee is also opposing outright the separate move to withdraw DLA entitlement from people living in care homes.
The reasoning for the reforms has been The Broken of Britain's main line of attack on DLA reform over the consultation period, and the SSAC say that it is "concerned that the aim of reducing the number of working-age claimants of DLA by 20% appears to be driving the need for reform of the benefit". The committee wants "some clarity" on the aims of the reform. The SSAC also echo The Broken of Britain by pointing out that research for the Department for Work and Pensions, published last summer, found conclusively that DLA made "a real difference" in assisting disabled people to manage their daily lives and contribute to society.
This is further major embarrassment for the Government, and for Maria Miller in particular, and gives The Broken of Britain some ammunition to fight DLA reform as presented in the Welfare Reform Bill. The Coalition is still reeling from Amelia Gentleman's expose of ESA, and other humiliations. The Broken of Britain fully intends to keep the pressure up.
The reasoning for the reforms has been The Broken of Britain's main line of attack on DLA reform over the consultation period, and the SSAC say that it is "concerned that the aim of reducing the number of working-age claimants of DLA by 20% appears to be driving the need for reform of the benefit". The committee wants "some clarity" on the aims of the reform. The SSAC also echo The Broken of Britain by pointing out that research for the Department for Work and Pensions, published last summer, found conclusively that DLA made "a real difference" in assisting disabled people to manage their daily lives and contribute to society.
This is further major embarrassment for the Government, and for Maria Miller in particular, and gives The Broken of Britain some ammunition to fight DLA reform as presented in the Welfare Reform Bill. The Coalition is still reeling from Amelia Gentleman's expose of ESA, and other humiliations. The Broken of Britain fully intends to keep the pressure up.
Tuesday, 22 February 2011
ESA Fails My Test, Says Its Designer
Amelia Gentleman is becoming something of a hero in disability campaigning circles, as she publishes article after well-researched article on social issues affecting disabled people, and especially the Government's reforms to welfare. Her latest masterpiece in the Guardian is a report on Prof. Paul Gregg, designer of the Work Capability Assessment which decides eligibility for the new Employment Support Allowance, who says that: "The test is badly malfunctioning. The current assessment is a complete mess," which is hardly a vote of confidence.
Many disabled people will feel that this is confirmation of what has already become apparent in the test's failures in dealing with vulnerable individuals and its poor performance in trials. The article reports that: "Since the beginning of 2009 more than 240,000 cases contesting the result of the health tests have been accepted for tribunal hearings and, of the cases they hear, tribunal judges overturn about 40% of test findings." The Government should now retreat on the nationwide rollout of ESA, which begins next month.
Prof. Gregg says that: "In the first trial, the system did not work. We need to trial the new, proposed, reformed system to check and prove that it works and avoids the serious stress and misclassification of people that we have already seen, before we start implementing it on a large and vulnerable population," he said. "The test so far has caused a huge amount of anguish to the people who have gone through it. We need to have something that is working accurately before we apply it nationally. We shouldn't roll this out until we have something that is working."
The Broken of Britain agree wholeheartedly with this last sentence, and plan to use it as we oppose ESA as it is structured. This gives added impetus to the many voices calling for the ESA system to be fundamentally re-examined, and will be important as The Broken of Britain prepare to oppose anti-disabled provisions in the Welfare Reform Bill.
Many disabled people will feel that this is confirmation of what has already become apparent in the test's failures in dealing with vulnerable individuals and its poor performance in trials. The article reports that: "Since the beginning of 2009 more than 240,000 cases contesting the result of the health tests have been accepted for tribunal hearings and, of the cases they hear, tribunal judges overturn about 40% of test findings." The Government should now retreat on the nationwide rollout of ESA, which begins next month.
Prof. Gregg says that: "In the first trial, the system did not work. We need to trial the new, proposed, reformed system to check and prove that it works and avoids the serious stress and misclassification of people that we have already seen, before we start implementing it on a large and vulnerable population," he said. "The test so far has caused a huge amount of anguish to the people who have gone through it. We need to have something that is working accurately before we apply it nationally. We shouldn't roll this out until we have something that is working."
The Broken of Britain agree wholeheartedly with this last sentence, and plan to use it as we oppose ESA as it is structured. This gives added impetus to the many voices calling for the ESA system to be fundamentally re-examined, and will be important as The Broken of Britain prepare to oppose anti-disabled provisions in the Welfare Reform Bill.
ANNOUNCING: #TBofBTT - Talking Tuesday, Thinking Thursday Writer's Series
I am pleased to announce the next phase of our ongoing Talking Tuesday, Thinking Thursday Twitter Campaign. This latest effort builds on the original Twitter Stories initiative from 2010 and the recent Project V (#ProjV) event.
In addition to our 140-character Twitter Stories, every Tuesday and Thursday, We will have guest posts on our TBofB Blog.
The topic is at the discretion of our Writers - a personal account of their lives or work, an analysis of disability news or even a funny story. We are being very flexible with regards to subject matter especially given the unpredictability of political actions of great concern to disabled people here in the UK. It's also important to stress that we will only edit for the sake of grammar and punctuation. We will not publish without the Writer's final review and consent, as we want to preserve their style and original meaning.
Our inaugural entry, Ill at Ease, is by Catherine Hughes.
Please support this effort by sharing and retweeting. The Twitter hashtag is #TBofBTT.
Lisa J. Ellwood
Ill At Ease #TBofBTT
They call it ‘malaise’, which is defined as a general feeling of discomfort, illness, or lack of well-being. And it’s a symptom of a variety of conditions, including hypothyroidism and metabolic syndrome (PCOS, Syndrome X), which are amongst those from which I suffer.
It’s a French word, which you might translate as ‘ill-at-ease’. Words, you see, are my thing. I’m fascinated by etymology and I’ve been working on expanding my vocabulary since my dictionary-reading childhood. (Yes, really, I used to read the dictionary. On the bus en route to school every day, in the days before I had any inkling of how things were going to turn out for me.)
And yet, I lack the words to express what ‘malaise’ feels like to me.
I could try and tell you about the nausea, which can be so profound that it bypasses the whole notion of vomiting and goes straight to a desperate desire to be deeply unconscious. I could try to describe the exhaustion that has led me, on some days, to get out of bed at around ten, eat brunch and go back to bed around two, get up for some tea at five and be back in bed for eight; days when I do almost nothing but sleep. I could try and put into words the ghastly, hideous feeling of being terribly ill - a sense that I equate to one of being poisoned although, as far as I know, I have never yet been.
Even then, unless like me you are chronically sick, you probably wouldn’t understand. Even if you were able to see how pale I am, often sweaty and clammy, lumbering in my movements and occasionally in my speech. Even if you were to bear witness to the way my hands sometimes shake or the changes in my breathing when I try to quell the sick feeling by sheer force of will and an excess of oxygen.
I can, with greater authority, tell you what other people think ‘malaise’ means. I’ve heard all of the following - sometimes from doctors, sometimes from acquaintances - over the years:
“Tired all the time? You just need to lose some weight; get some exercise.” This was said to me at a time long gone when, fighting desperately for my health, I was running three miles every day, unable to control my weight gain even so. It’s been said to me repeatedly ever since.
“Are you sure you’re not pregnant?” Accompanied by a sneaky casting of the eye over my pendulous abdomen, one consequence of hyperinsulinemia. My hysterectomy was performed in 2005 when I was just 35 years old. So, yes, I’m fairly certain I’m not pregnant.
“Everybody gets tired.” Sneer, sniff. “You’d be as tired as me if you had a job.” I have several jobs. I care for four children and I run a household. I help my husband run his business and I am trying to build my career as a writer. You wouldn’t believe how hard I work, whenever my symptoms allow me to, taking advantage of the fact that, for me, writing is an escape (from the chronic pain I suffer following a botched operation) and a catharsis.
“It’s just the menopause. You’re no different from any other woman your age.” Really? The menopause usually starts when a woman is in her late forties or early fifties and some ovarian function remains even after that. I’m forty-one, I have no ovaries, and I can’t tolerate HRT. I’m not experiencing menopause; I’m going through the meno-sudden-standstill. And it is, believe me, a lot more cruel and unusual than nature’s gradual decline.
“It’s all in your head. You need to see a psychiatrist. Take antidepressants and you’ll be fine.” This is my favourite. Over many years of psychiatric treatment, my doctors and I have figured out that antidepressants do not improve my health, they jeopardise it. Not only do I not function at all when taking them, but I don’t care that I’m not functioning. Active therapies are my salvation - writing; singing; talking to a counsellor; hugging my kids as tight as I can.
And finally: “You’re so fat. What do you expect?” I expect respect as a fellow member of the human race. I expect compassion. I expect credence. These things are more common than I once feared but are sadly less ubiquitous for me than a healthy person might expect.
So, you see, ‘malaise’, to me, is more than the word doctors use to describe this nebulous, indescribable - yet potent - symptom that many, if not all, of the chronically sick endure. To me, the word is representative of the scepticism and contempt with which my attempts to explicate my symptoms are often greeted.
The willingness of many people to dismiss and disparage what is, for me, one of the worst aspects of my ill health - it is this attitude that puts me truly ill-at-ease.
Catherine Hughes - www.catherinegracehughes.com
It’s a French word, which you might translate as ‘ill-at-ease’. Words, you see, are my thing. I’m fascinated by etymology and I’ve been working on expanding my vocabulary since my dictionary-reading childhood. (Yes, really, I used to read the dictionary. On the bus en route to school every day, in the days before I had any inkling of how things were going to turn out for me.)
And yet, I lack the words to express what ‘malaise’ feels like to me.
I could try and tell you about the nausea, which can be so profound that it bypasses the whole notion of vomiting and goes straight to a desperate desire to be deeply unconscious. I could try to describe the exhaustion that has led me, on some days, to get out of bed at around ten, eat brunch and go back to bed around two, get up for some tea at five and be back in bed for eight; days when I do almost nothing but sleep. I could try and put into words the ghastly, hideous feeling of being terribly ill - a sense that I equate to one of being poisoned although, as far as I know, I have never yet been.
Even then, unless like me you are chronically sick, you probably wouldn’t understand. Even if you were able to see how pale I am, often sweaty and clammy, lumbering in my movements and occasionally in my speech. Even if you were to bear witness to the way my hands sometimes shake or the changes in my breathing when I try to quell the sick feeling by sheer force of will and an excess of oxygen.
I can, with greater authority, tell you what other people think ‘malaise’ means. I’ve heard all of the following - sometimes from doctors, sometimes from acquaintances - over the years:
“Tired all the time? You just need to lose some weight; get some exercise.” This was said to me at a time long gone when, fighting desperately for my health, I was running three miles every day, unable to control my weight gain even so. It’s been said to me repeatedly ever since.
“Are you sure you’re not pregnant?” Accompanied by a sneaky casting of the eye over my pendulous abdomen, one consequence of hyperinsulinemia. My hysterectomy was performed in 2005 when I was just 35 years old. So, yes, I’m fairly certain I’m not pregnant.
“Everybody gets tired.” Sneer, sniff. “You’d be as tired as me if you had a job.” I have several jobs. I care for four children and I run a household. I help my husband run his business and I am trying to build my career as a writer. You wouldn’t believe how hard I work, whenever my symptoms allow me to, taking advantage of the fact that, for me, writing is an escape (from the chronic pain I suffer following a botched operation) and a catharsis.
“It’s just the menopause. You’re no different from any other woman your age.” Really? The menopause usually starts when a woman is in her late forties or early fifties and some ovarian function remains even after that. I’m forty-one, I have no ovaries, and I can’t tolerate HRT. I’m not experiencing menopause; I’m going through the meno-sudden-standstill. And it is, believe me, a lot more cruel and unusual than nature’s gradual decline.
“It’s all in your head. You need to see a psychiatrist. Take antidepressants and you’ll be fine.” This is my favourite. Over many years of psychiatric treatment, my doctors and I have figured out that antidepressants do not improve my health, they jeopardise it. Not only do I not function at all when taking them, but I don’t care that I’m not functioning. Active therapies are my salvation - writing; singing; talking to a counsellor; hugging my kids as tight as I can.
And finally: “You’re so fat. What do you expect?” I expect respect as a fellow member of the human race. I expect compassion. I expect credence. These things are more common than I once feared but are sadly less ubiquitous for me than a healthy person might expect.
So, you see, ‘malaise’, to me, is more than the word doctors use to describe this nebulous, indescribable - yet potent - symptom that many, if not all, of the chronically sick endure. To me, the word is representative of the scepticism and contempt with which my attempts to explicate my symptoms are often greeted.
The willingness of many people to dismiss and disparage what is, for me, one of the worst aspects of my ill health - it is this attitude that puts me truly ill-at-ease.
Catherine Hughes - www.catherinegracehughes.com
Sunday, 20 February 2011
Public Consultation on DLA Reform - Reflections
The consultation on Disability Living Allowance closed on Friday and, to be honest, a far as mountains to climb go, this was only a minor foothill. The consultation closed on Friday the 18th of February, 4 days later than the Valentine's Day closing originally planned. On Wednesday the 16th of February, the Welfare Reform Bill was given it's First Reading in the House of Commons. This Bill contains all the major provisions for the new Personal Independence Payment, and the abolition of DLA - 2 days before the consultation ended. This means that the consultation is a sham, and that the Minister for Disabled People's promises that consultation responses would be considered ring hollow.
This much was quite predictable of course, and The Broken of Britain's submission to the consultation was as much about setting out the reasons for our opposition to reform and making the case against it. The positives to come from the consultation are that we know that we are winning attention in the media and in political circles, thanks to you, our readers. We also know that at least 10% of MPs support us after sustained lobbying by The Broken of Britain, as do 12% of Scottish MSPs - and 18% of Welsh AMs - and we're working on the others!
The Broken of Britain is now four months old, and is far stronger and better organised than when the DLA Reform Consultation was first announced. Over the past few months disabled people have managed to shout and be noticed, and The Broken of Britain has a couple of initiatives planned for the near future that will make sure that this pressure is sustained. We fully intend to ensure that the anti-disability provisions are removed from the Welfare Reform Bill. The response to the consultation has convinced us that this is more than just wishful thinking. The time is coming when they will be forced to listen.
This much was quite predictable of course, and The Broken of Britain's submission to the consultation was as much about setting out the reasons for our opposition to reform and making the case against it. The positives to come from the consultation are that we know that we are winning attention in the media and in political circles, thanks to you, our readers. We also know that at least 10% of MPs support us after sustained lobbying by The Broken of Britain, as do 12% of Scottish MSPs - and 18% of Welsh AMs - and we're working on the others!
The Broken of Britain is now four months old, and is far stronger and better organised than when the DLA Reform Consultation was first announced. Over the past few months disabled people have managed to shout and be noticed, and The Broken of Britain has a couple of initiatives planned for the near future that will make sure that this pressure is sustained. We fully intend to ensure that the anti-disability provisions are removed from the Welfare Reform Bill. The response to the consultation has convinced us that this is more than just wishful thinking. The time is coming when they will be forced to listen.
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