(Content warning: Mentions of domestic abuse and suicide)
During his Tory party conference speech last week, Rishi Sunak, while justifying slashing Universal Credit, asked his audience “is the answer to their hopes and dreams just to increase their benefits?”
The thing is, for many people; the answer is a simple “yes;” an increase in benefits could be an answer to their hopes and dreams.
* If a parent’s dream is for their kids to have a better life than them, and increased benefits mean they’ll be able to work only one job rather than the three they have now, giving them time to help their children with homework, which will enable their children to achieve more later in life: Yes, increased benefits can answer their hopes and dreams.
* If a terminally ill person’s dream is to go on an exciting adventure before they die: Yes, increasing their benefits can be the answer to their hopes and dreams.
* If a person with a mobility impairment dreams of a really good wheelchair that’ll change their life, but the NHS won’t prescribe what they need and they’re not popular enough to crowdfund it: Yes, increasing their benefits can answer their hopes and dreams.
* If a disabled person wants to move into a more accessible property, which will dramatically improve their health, but they can’t find one within the local housing allowance budget: Yes, increasing their benefits can answer their hopes and dreams.
* If a disabled person was saving up for something special, but they blew their savings on the extra costs of being disabled/shielding in a pandemic: Yes, increasing their benefits can answer their hopes and dreams.
PIP is supposed to cover the extra costs of being disabled, but despite the fact that so many of us saw our extra costs soar during the pandemic - from having to have everything delivered costing more than being able to go to the shops while shielding, to having to turn to more expensive things like robot vacuums and having to get takeaway every day when social care was withdrawn - we got no extra PIP payments to cover those extra costs. I calculated that my extra costs related to shielding from March 2020 to March 2021 came to £5,000. I won’t say I could “afford” that, because it’s not true; but I did have access to that amount thanks to family, while not all disabled people did. At least one disabled person starved to death during the first lockdown because he couldn’t access food while many other disabled people will have gone cold, hungry, or without connectivity due to not being able to afford phone credit because their extra costs were not met. There were no campaigns to get a one-off payment to PIP claimants to cover our pandemic extra costs, because no political party actually cares enough to fight for us; and the major disability charities aren’t any better, because they didn’t demand that PIP meet our pandemic-related extra costs either.
And if you have more than £16k in the bank, you’re not eligible for any income based benefits, you can only claim £74.70/£114.10 weekly contributions based ESA (as long as you’ve been paying your National Insurance contributions in the last couple of years), plus PIP. I’ve a good friend who got an inheritance a month before the pandemic. Not huge, but enough to buy a crap house in some of the most deprived areas of the north. But her income based benefits were cut because she did the right thing and told the DWP she’d gotten the inheritance, so during the pandemic she’s had to live off that inheritance because she was paying £107 rent a week out of £114 ESA; leaving her with £7 a week to live off, plus PIP to cover some of her extra costs of being disabled. Obviously £7 a week for all bills is not survivable, so she’s had to dip into the inheritance; and now it looks like she’ll be renting for the rest of her life between the inheritance she blew on surviving while shielding, and the soar in house prices caused by the stamp duty cut. Her only hope to buy a crap house in a deprived area in the north now is if there’s a housing crash this winter.
Most political parties at various points in time bang on and on about how the system should look after those who’ve ‘done the right thing’ and worked hard and paid their National Insurance. But they don’t at all. Having £7 a week to live on after you’ve paid your rent is not “looked after”. Those who’ve paid their NI but aren’t eligible for income based benefits because they’ve got a partner in work, or got more than £16k from an inheritance or old savings from when they were fit for work, are treated like shit. And because of that, the benefits system will pay more in the end. My friend won’t be able to buy a house now, so she’ll deplete the small inheritance, and then will soon be back on income based benefits again and the state will need to pay her rent again. If contributions based benefits were fair, she wouldn’t have blown out her inheritance while shielding, she’d be able to buy a cheap house once she’s had her third jab and finished shielding, and the state would never need to help her with rent ever again.
She - like claimants of all legacy benefits like JobSeekers Allowance, Carer’s Allowance, and all types of ESA (both contributions and income based) - didn’t even get the extra £20 a week that UC claimants got. When you’re left with £7 a week after paying rent, that extra £20 would triple the amount available to spend before having to buy food out of the money she was hoping to buy a future with. The #20MoreForAll campaign was pretty pitiful to be honest because it had no mainstream support; the main political parties barely made a peep - Labour just had the very occasional tweet from the Shadow Work & Pensions Secretary - and the charities that are supposed to represent us barely made a fuss either. I suppose at least they did more for that than they did for trying to get a one-off PIP payment to cover our pandemic extra costs; with the amount of effort there being absolute zero, they’ve never mentioned it at all.
(Friend consented to being written about anonymously)
* If a parent is worried about their children being at risk of getting involved in a gang, and dreams of moving to a new city to give their kids a fresh start, but they can’t afford a moving van, a deposit on a new private rented flat, or even to pass the financial check landlords carry out: Yes, increasing their benefits can answer their hopes and dreams.
* If a person with limited mobility simply dreams of surviving this winter without dying of hypothermia, and wishes they could afford to put the heating on: Yes, increasing their benefits can answer their hopes and dreams.
Disabled people born after 26th September 1955 aren’t eligible for the non-means tested Winter Fuel Payments and despite the fact that fuel bills are higher than ever, disabled people are having to spend more time at home than ever before because many of us are still at least semi-shielding, and most importantly; many of us can’t move around to keep warm like non-disabled people who can do star jumps to warm up: There’s no campaign to introduce WFPs for disabled people in this most expensive winter ever. Again, neither politicians, nor charities that supposedly represent us, care about us going cold this winter. The WFP ranges from £100-£300 depending on age and circumstances. I’d say that £150 for those getting the low rate mobility component of DLA/PIP (who have some limitations with their ability to move around), and £300 for those getting the high rate mobility component of DLA/PIP (who have severe limitations with their ability to move around), would be suitable rates. But no-one cares if we fucking freeze, especially not those supposed to be representing us.
* If a person who recently became disabled can no longer do their old job, and they need money to pay the course fees to retrain do something different: Yes, increasing their benefits can answer their hopes and dreams.
While you can get some qualifications funded by the JobCentre if you meet certain conditions; there will always be people who want/need to train on a course that isn’t funded, or they don’t meet the criteria for funding.
* If a homeowner is off work sick long term with Long Covid, and they dream of keeping the family home, perhaps the home where their children grew up, maybe the house where their spouse died, but they can’t afford the mortgage on ESA or Universal Credit: Yes, increasing their benefits can answer their hopes and dreams.
* If someone permanently too ill to work dreams of being a homeowner: Yes, increasing their benefits can answer their hopes and dreams.
You can claim housing benefits to pay your landlord’s mortgage, but not your own. The only help for homeowners with housing costs is Support for Mortgage Interest; and even that’s a loan nowadays. So you’d have to find the money for your mortgage, and all the other expenses in life, out of your £74.70/£114.10 weekly contributions based ESA, or £324.84-£668.47 monthly Universal Credit. (Some people are still getting income based ESA, although you haven't been able to put in a new claim for ibESA since long before SARS-CoV2 made the jump to humans, so that won't apply to anyone newly claiming benefits due to long covid.)
* If a disabled person on income based benefits dreams of living with their partner, but can’t afford it because their benefits will be stopped completely leaving them wholly dependent on their other half: Yes, increasing their benefits can answer their hopes and dreams.
* If a disabled person dreams of leaving their abusive partner, then an increase to benefits that are paid directly to them - specifically PIP or contributions-based ESA, as distinct from Universal Credit which will be paid to the head of the household - could enable them to afford transport and a temporary place to stay in order to be able to leave; answering their hopes and dreams.
Disabled people are nearly three times as likely to experience domestic abuse as non-disabled people so needing to save up money that comes to you personally in order to leave is not a hypothetical risk for thousands. It's also why many disabled people daren't move in with a partner they'd be wholly dependent on because it would put them at such high risk of financial abuse, and potentially other kinds too. You never know what the wonderful, kind, gentle person you love right now will turn into when you're completely dependent on them just to buy tampons.
* If a disabled person simply dreams of not having to count every penny, of being able to spontaneously buy a new dress, of being able to get takeaway now and then, of being able to put the heating on more than 3 hours a day: Yes, increasing their benefits can answer their dreams.
* If a new computer could make someone employable, if they’re only well enough to work from home and a new PC could completely change their life, but they just can’t afford one: Yes, increasing their benefits can answer their hopes and dreams.
I don’t know if you noticed, but in several of these examples - the person who needs a new wheelchair, the person who needs a more accessible home, the person who needs to retrain, and the person who needs a new computer - an increase in benefits would ultimately make them more employable. The government thinks slashing benefits is the answer to getting disabled people back to work; but in reality the opposite is true. If you need a wheelchair to physically get yourself to work, but you can’t afford one, the NHS won’t issue a suitable one, you’re not eligible for Motability because you got turned down for high rate mobility PIP, and you’re not popular enough to crowdfund one: You literally cannot physically go into a job interview to try and get hired.
First Labour, then Tories and Lib Dems, then Tories on their own, then Tories and the DUP, and most recently Tories on their own again, have spent the last 13 years cutting disabled people’s benefits to try to get seriously ill and severely disabled people to get off their "lazy" sick and disabled arses, and into work. Never mind the fact that DLA was not an out of work benefit and plenty of claimants needed it to stay in employment; they still created PIP to try and cut the case load by 20%, spouting utter bollocks about getting disabled people into work.
But when you cut someone’s benefits, you drive them further from the workplace. If someone has a job that can’t be done from home, but their PIP is stopped so the Motability scheme takes back their leased wheelchair: Suddenly they cannot go into work, maybe cannot even get out of bed. They’ll at the very least need to take a sabbatical from work until they get a new wheelchair, they may even lose their job entirely.
You also drive them further from the workplace because poverty damages health, and we’re talking about people who are already sick. If someone has cancer but is hoping that claiming benefits is a short term thing because they’re hoping they’ll recover quickly; until they discover how little they’ll have to live on. You cannot recover from a serious illness like cancer if you’re malnourished from poor quality food, and borderline hypothermic because you can’t move much and you can’t afford to put the heat on, while the stress of poverty can also affect physical healing. A cannabis prescription may help with many facets of cancer with THC being an antiemetic, a painkiller, and an appetite stimulant, but cannabis prescriptions are pretty much only available privately; and you definitely won’t be able to afford private healthcare on £74.70 a week ESA (the amount you’ll get if you’re expected to be able to return to work in the not too distant future). Such claimants would have the chance to recover quicker and get back to work quicker if their benefits were enough that they could eat well, keep warm in winter and cool in summer, avoid having their physical healing slowed by the psychological stress caused by poverty, and afford a bit of private healthcare; whether a physio to help them get movement back after an op, or, yes; a doctor who issues private prescriptions for medical marijuana.
The stress of poverty affects even those who were the most mentally sound previously. So if you’re claiming benefits for a mental health condition, the chances you’ll be able to get off benefits is slim. But if our benefits system lifted ill and impaired people out of poverty, it would give people a real shot at recovering from a mental illness, instead of our social security system making people sicker. Especially if people could afford to pay for mental healthcare in a timely manner rather than waiting at least months, commonly years, often for the wrong therapy on the NHS.
If you just yank the social security rug out from under the feet of people claiming benefits due to severe mental illness, obviously they’re not well enough just get a job, so they end up dying like Errol Graham and Mark Wood who both starved to death because they couldn’t afford food, or they’ll die by suicide like Philippa Day, Paul Reekie, and far too many others to list. Reekie died only a month after Iain Duncan Smith succeeded Yvette Cooper as Work & Pensions secretary, so his death was as a result of the benefit cuts instituted by the last Labour government; before the Tories had the chance to make the system even worse. It's worth noting that in Australia, during the pandemic when social security payments temporarily rose and lifted people briefly out of poverty, suicides went down.
The government created the non-means tested furlough scheme to keep people's finances sound while they weren't in work, because they know full well that plunging people into poverty drives them further away from work by damaging their mental and physical health, and leaves them unable to afford the essentials to get back into work like a computer and smart clothing. But they don't apply the same logic to sick and disabled people. Somehow we're a magic mirror image of the non-disableds, and forcing us deeper into poverty will supernaturally drive us closer to work. Even though the list of DWP-related deaths tells a different story.
Yet despite all these obvious examples of how increased benefits could not only answer our hopes and dreams (and in some cases save our lives), but also achieve the government’s goal of making us more employable; Thérèse Coffey said at the Tory conference that she wants to cut even more people’s benefits “to get us into work” when, of course, all it’ll do is make people iller - therefore further from work, less able to afford to get healthy, and less able to buy the tools they need to find work like wheelchairs and computers - and will ultimately lead to even more preventable deaths at the hands of the DWP.
The main reason for planning more cuts, of course, is just because the Tories love levelling down, despite all the "levelling up" bollocks that riddled Johnson's conference speech. At the exact same time that the Universal Credit cut went into effect, plunging families into poverty, increasing hunger and suffering across the country; Thérèse Coffey was making sure everybody knew that she was loving it; she was having the time of her life.
Campaigning against the government's distressing war on disabled benefit claimants. All posts represent the opinions of their respective authors and not WtB as a whole.
Showing posts with label dla. Show all posts
Showing posts with label dla. Show all posts
Wednesday, 13 October 2021
Friday, 24 October 2014
An Open Letter to the LGBT+ Community
I went to see Pride last week. Yeah, I know it was released a month earlier but my dad was in hospital at the time so I was mostly just seeing the A12 as I drove up and down it.
It was a period of British history that I know very little about: I was only 5 in 1984. I heard mumblings about miners; but what 5 year old actually pays attention to the news? And it was certainly a long, long, time before I realised I was gay.
I went to see the film after 3 nights of no sleep because of a shoulder injury. Due to the sleep deprivation I was just a tad over-emotional. I spent the whole film alternating between laughing and crying, and was in floods of happy tears at the end. The second the house lights came up I had to make a dash for the nearest toilet to hide until my red splotchy face looked less red and splotchy.
The miners were probably the hardest hit during that particular 4 year term of office. And it was deeply heartening to hear a story about another oppressed group the government loathed - the LGBT community - coming to the support of others in solidarity just because it was the right thing to do.
But after the film I couldn't shake the thought "where are the LGBT community now while disabled people are being kicked even harder than the miners were then?"
The Centre for Welfare Reform calculated that severely disabled people will be hit 19 times harder by the cuts than other people. So many cuts that even I probably can't remember to list them all. But here are just the ones I can think of off the top of my head:
And these are only the cuts so far. Recently we've heard how the Tories want to cut housing benefit for 18-21 year olds, freeze working age benefits (which will affect disability benefits, despite Osborne's claim at the Tory conference), and pay benefits by cards instead of cash. Then IDS wants to charge income tax on support to pay for wheelchairs and for someone to wipe your butt, despite the fact that many disabled people don't see penny of it because it's immediately deducted to pay for support services. And, of course, Freud let it slip that he wants to be able to pay disabled people only £2 an hour.
Do you remember last Wednesday? It was a great day. For one day the entire country cared about how this government wanted to undermine disabled people's right to the same minimum wage as everybody else. He was the top story for most news outlets, he trended on Twitter all day: And for just one day it felt like the entire nation cared about our equal rights.
Then everyone went to bed that night and by the following morning most people had forgotten about us again. This week disabled people have been in court again fighting the Independent Living Fund closure. Where was the outrage this week that the government want to withdraw the funding that pays for severely disabled people to have food put in their mouths and their butts lifted onto the toilet?
I kind of get it. I mean, in 1984 LGBT people were really oppressed. Relationships weren't legally recognised, the age of consent for gay men was 5 years older than for heterosexuals. AIDS was misunderstood, treatments hadn't been developed, and it was far more stigmatised than it is today. There were no anti-discrimination laws protecting us from being fired for being LGBT or protecting us from being discriminated against by B&B owners when we just want a break for a couple of days.
Now we can get married, the age of consent is equal, HIV is a controllable chronic condition. We do have the legal right to sue our employer if they fire us for coming out at work and we can sue B&B owners who refuse us a room.
In 1984 LGBTs could look at miners and see people who were equally oppressed. The same can't be said of LGBTs looking at disabled people today. Except for those of us who are both LGBT and disabled; most LGBTs have the freedom to have a proper meal every day. The same can't be said for disabled people who are physically unable to cook, can't get social care for someone to help them with that, and so end up eating mostly just crisps. Most LGBTs can have a shower every day. The same can't be said of disabled people who were forced out of their accessible home by the bedroom tax, no longer have an accessible shower, and can only get clean by wiping themselves down with a flannel.
You have to remember that the LGBT community and the disabled community have so much in common in so many ways. We both still experience discrimination, even though it's illegal and we have the law on our side. It's a fight we both face. Hate crime affects LGBT people just like it affects disabled people. Some people are even attacked for being both disabled and LGBT. Both disabled people and LGBT people are massively unpopular with the senior party in the coalition: Not only are the Tories stripping away all the support systems that allowed for the equality of disabled people, but more Tories voted against equal marriage than for it. The law only went through because of supporters in the other parties.
The main difference between the 2 communities I belong to, of course, is society's response. When lesbians were thrown out of Sainsbury's, protesters quickly responded. A few days later a blind woman was kicked out of Tesco. Protesters were nowhere to be seen. Disabled people are more likely to be mocked for going shopping than supported if we get discriminated against in store.
In Pride we see Lesbians and Gays Support the Miners (LGSM) helping to fund and distribute food parcels to the striking miners. Where were the food parcels for David Clapson or Mark Wood? I don't mean to suggest that the LGBT community is in any way responsible for such tragedies for not being more supportive: But the handing out of the food parcels had such a resonance with the issues of today.
The film depicts LGSM getting to work before consulting miners about what it is they actually need. If LGBTs started supporting disabled people (LGBTSDP?); I'd beg of you to ask us how you can help. Disabled people's lives have historically been dominated by non-disabled people thinking they know what's best for us. There's a common saying in the disabled community "nothing about us without us," and that applies as much now as ever. A couple of years ago UK Uncut organised a protest specifically about disability benefit cuts. But because they didn't consult with disabled people for the meet-up arrangements: They chose to meet at a tube station that has no access for mobility impaired people.
Disabled people have loads of ideas for creative ways of challenging the cuts; but we need help to pull them off. We've written films about the ILF closure that we can't find anyone to produce. We organise protests and sometimes only 10 people turn up. There are far more LGBT people with social influence than disabled people. When there's a story like this week's court case we need the help of people with prominence to amplify our message because our collective voice amounts to a mere whisper; where potential LGBT allies have the power to really shout about it. Bronski Beat supported the miners; who is going to support us?
Another very common saying in the disability community is "rights not charity". In Pride LGSM start out their work with the collecting buckets to raise money. At the moment the disabled community is in a paradoxical position: We need to raise money in order to fight for the rights which are being stripped away. Paypal is the 21st century collecting tin and Disabled People Against Cuts are currently asking people to donate 50p to carry on their excellent campaigning.
Pride was a beautifully told story of the LGBT community rushing to the support of those who really needed it. I can't wait for it to come out on DVD so I can watch it again. But ever since seeing it I haven't been able to shake the slight feeling of sadness. There have been so many wonderful changes in the last 30 years that have benefited both communities I belong to. As a disabled person I first had the Disability Discrimination Act, which then became subsumed by the Equality Act. As a gay person I also have protection under the Equality Act. I can even get married now!
But the passion LGSM had for supporting people whose lives were being utterly destroyed by the government: The film just made me acutely aware that disabled people doesn't have that same support. And as someone with a foot in each community, that awareness is slightly frying my brain.
So, LGBT community. Please help us. Our equality, our independence, our jobs, our education, and even our lives depend on winning this fight.
It was a period of British history that I know very little about: I was only 5 in 1984. I heard mumblings about miners; but what 5 year old actually pays attention to the news? And it was certainly a long, long, time before I realised I was gay.
I went to see the film after 3 nights of no sleep because of a shoulder injury. Due to the sleep deprivation I was just a tad over-emotional. I spent the whole film alternating between laughing and crying, and was in floods of happy tears at the end. The second the house lights came up I had to make a dash for the nearest toilet to hide until my red splotchy face looked less red and splotchy.
The miners were probably the hardest hit during that particular 4 year term of office. And it was deeply heartening to hear a story about another oppressed group the government loathed - the LGBT community - coming to the support of others in solidarity just because it was the right thing to do.
But after the film I couldn't shake the thought "where are the LGBT community now while disabled people are being kicked even harder than the miners were then?"
The Centre for Welfare Reform calculated that severely disabled people will be hit 19 times harder by the cuts than other people. So many cuts that even I probably can't remember to list them all. But here are just the ones I can think of off the top of my head:
- The creation of Personal Independence Payment to replace Disability Living Allowance. The intention was to reduce the budget by 20% by making the criteria stricter. DLA is only paid to meet care needs and mobility needs. It's to be spent on things like wheelchairs and having someone help you out of bed in the morning. Not exactly luxuries that a disabled person can cut back on. Did you know that now if you can walk a mere 21 metres you probably won't get that help to put towards buying a wheelchair? With the DWP and the private firms hired to carry out the medical assessments unable to organise a proverbial in a brewery; people are waiting for up to a year for their application to be processed and there are 145,000 people waiting for support they need to function.
- Employment and Support Allowance is the benefit for people too ill or impaired to work. There are 394,000 people waiting to have their application for that processed. 394,000 waiting to put food on the table. Such an appalling system that we regularly read about people who were so ill that they died of their condition while allegedly "fit for work". Larry Newman and Cecilia Burns are just 2 of those people. The company doing the fitness for work assessments got it so wrong so often that 40% of appeals against their decisions were successful.
- Two thirds of households affected by the bedroom tax contain a disabled person.
- In most parts of the country; working age benefit claimants have had their Council Tax Benefit cut by 10%.
- At the moment there's something called the Severe Disability Premium. It's not a benefit in its own right; it's a top-up premium on top of ESA/Income Support. The clue as to who is eligible is in the name: Severely disabled people. The eligibility criteria are so complex that only 230,000 people in the whole country are eligible. Under Universal Credit; the SDP is being abolished completely. Not made a bit stricter: Abolished.
- The Independent Living Fund, which allows 18,000 disabled people with the highest care needs to live in the community, is being closed next year.
- Social care is being cut to the point that continent people are being told to use incontinence pads because they're no longer allowed help to go to the toilet. Once I caught the local news while at my dad's house. A representative of Norfolk Council actually went on TV and said "we're cutting things like adult social care in order to preserve popular services like libraries." Disabled people are so loathed that council officials can go on TV and say that with their head held high.
- We're all aware how this government made it more expensive to get an education. Did you know that Disabled Students' Allowance, which pays for things like Deaf students to have a BSL interpreter, is being cut? They recently announced these cuts are being postponed. Not cancelled, just postponed.
- Access to Work, a scheme which funds support to allow disabled people to function in the workplace, has been utterly screwed up. Jess and Julie have both written recently about how these cuts are jeopardising their jobs. They are far from alone.
And these are only the cuts so far. Recently we've heard how the Tories want to cut housing benefit for 18-21 year olds, freeze working age benefits (which will affect disability benefits, despite Osborne's claim at the Tory conference), and pay benefits by cards instead of cash. Then IDS wants to charge income tax on support to pay for wheelchairs and for someone to wipe your butt, despite the fact that many disabled people don't see penny of it because it's immediately deducted to pay for support services. And, of course, Freud let it slip that he wants to be able to pay disabled people only £2 an hour.
Do you remember last Wednesday? It was a great day. For one day the entire country cared about how this government wanted to undermine disabled people's right to the same minimum wage as everybody else. He was the top story for most news outlets, he trended on Twitter all day: And for just one day it felt like the entire nation cared about our equal rights.
Then everyone went to bed that night and by the following morning most people had forgotten about us again. This week disabled people have been in court again fighting the Independent Living Fund closure. Where was the outrage this week that the government want to withdraw the funding that pays for severely disabled people to have food put in their mouths and their butts lifted onto the toilet?
I kind of get it. I mean, in 1984 LGBT people were really oppressed. Relationships weren't legally recognised, the age of consent for gay men was 5 years older than for heterosexuals. AIDS was misunderstood, treatments hadn't been developed, and it was far more stigmatised than it is today. There were no anti-discrimination laws protecting us from being fired for being LGBT or protecting us from being discriminated against by B&B owners when we just want a break for a couple of days.
Now we can get married, the age of consent is equal, HIV is a controllable chronic condition. We do have the legal right to sue our employer if they fire us for coming out at work and we can sue B&B owners who refuse us a room.
In 1984 LGBTs could look at miners and see people who were equally oppressed. The same can't be said of LGBTs looking at disabled people today. Except for those of us who are both LGBT and disabled; most LGBTs have the freedom to have a proper meal every day. The same can't be said for disabled people who are physically unable to cook, can't get social care for someone to help them with that, and so end up eating mostly just crisps. Most LGBTs can have a shower every day. The same can't be said of disabled people who were forced out of their accessible home by the bedroom tax, no longer have an accessible shower, and can only get clean by wiping themselves down with a flannel.
You have to remember that the LGBT community and the disabled community have so much in common in so many ways. We both still experience discrimination, even though it's illegal and we have the law on our side. It's a fight we both face. Hate crime affects LGBT people just like it affects disabled people. Some people are even attacked for being both disabled and LGBT. Both disabled people and LGBT people are massively unpopular with the senior party in the coalition: Not only are the Tories stripping away all the support systems that allowed for the equality of disabled people, but more Tories voted against equal marriage than for it. The law only went through because of supporters in the other parties.
The main difference between the 2 communities I belong to, of course, is society's response. When lesbians were thrown out of Sainsbury's, protesters quickly responded. A few days later a blind woman was kicked out of Tesco. Protesters were nowhere to be seen. Disabled people are more likely to be mocked for going shopping than supported if we get discriminated against in store.
In Pride we see Lesbians and Gays Support the Miners (LGSM) helping to fund and distribute food parcels to the striking miners. Where were the food parcels for David Clapson or Mark Wood? I don't mean to suggest that the LGBT community is in any way responsible for such tragedies for not being more supportive: But the handing out of the food parcels had such a resonance with the issues of today.
The film depicts LGSM getting to work before consulting miners about what it is they actually need. If LGBTs started supporting disabled people (LGBTSDP?); I'd beg of you to ask us how you can help. Disabled people's lives have historically been dominated by non-disabled people thinking they know what's best for us. There's a common saying in the disabled community "nothing about us without us," and that applies as much now as ever. A couple of years ago UK Uncut organised a protest specifically about disability benefit cuts. But because they didn't consult with disabled people for the meet-up arrangements: They chose to meet at a tube station that has no access for mobility impaired people.
Disabled people have loads of ideas for creative ways of challenging the cuts; but we need help to pull them off. We've written films about the ILF closure that we can't find anyone to produce. We organise protests and sometimes only 10 people turn up. There are far more LGBT people with social influence than disabled people. When there's a story like this week's court case we need the help of people with prominence to amplify our message because our collective voice amounts to a mere whisper; where potential LGBT allies have the power to really shout about it. Bronski Beat supported the miners; who is going to support us?
Another very common saying in the disability community is "rights not charity". In Pride LGSM start out their work with the collecting buckets to raise money. At the moment the disabled community is in a paradoxical position: We need to raise money in order to fight for the rights which are being stripped away. Paypal is the 21st century collecting tin and Disabled People Against Cuts are currently asking people to donate 50p to carry on their excellent campaigning.
Pride was a beautifully told story of the LGBT community rushing to the support of those who really needed it. I can't wait for it to come out on DVD so I can watch it again. But ever since seeing it I haven't been able to shake the slight feeling of sadness. There have been so many wonderful changes in the last 30 years that have benefited both communities I belong to. As a disabled person I first had the Disability Discrimination Act, which then became subsumed by the Equality Act. As a gay person I also have protection under the Equality Act. I can even get married now!
But the passion LGSM had for supporting people whose lives were being utterly destroyed by the government: The film just made me acutely aware that disabled people doesn't have that same support. And as someone with a foot in each community, that awareness is slightly frying my brain.
So, LGBT community. Please help us. Our equality, our independence, our jobs, our education, and even our lives depend on winning this fight.
Wednesday, 15 October 2014
Not Worth It
You'd have to be away from all means of communication today to have not noticed that Lord Freud thinks that disabled people "aren't worth" the minimum wage. Surprisingly even the mainstream media are outraged; BBC News are leading with it.
I'm not going to go into depth about everything wrong with his initial remarks because it's already been covered extensively. If you're looking for comment pieces on his original remarks, I recommend this from Frances Ryan, or this from Richard Exell.
The only things I have to add on the subject of his initial statement are these:
What interests me more is Freud's piss-take of an apology. He said:
We all know that he doesn't give a toss about disabled people. Increased spending on disabled households? Tell that to the 394,000 people waiting for their ESA claim to be processed so they can put food on the table. Or the 145,000 people waiting for their PIP claim to be processed so they can afford to pay for a wheelchair or for someone to get them out of bed in the morning. Or the bedroom tax victims: Three quarters of whom have a disabled person in the family. Or the people who currently get DLA because they're only capable of walking less than 50 metres, but will lose it under PIP because they can walk more than 20 metres. Or all the terminally ill people who've been deemed "fit for work" like Larry Newman or Cecilia Burns.
And as for Universal Credit increasing spending on disabled households: They're abolishing the Severe Disability Premium under UC. Not replacing it with something a bit stricter - like the move from DLA to PIP - they're just abolishing it. The country's 230,000 most severely disabled people will be significantly worse off under Universal Credit.
While it's great that the mainstream media are - for a change - coming to disabled people's defence over Freud's original remarks: Why are they accepting his apology without delving into the outright lies it contains?
Edit 16/10/14: Yet another Tory thinks the minimum wage is "A barrier to work". She too presumably was complicit in the DLA cuts which will force disabled people to quit work (the Tories were whipped to vote for cuts.)
Even Mr Money Saving Expert himself thinks disabled people should be exempt from the minimum wage:
Remember yesterday when people thought disabled people were worth it? What a great day. Shame it's "shit on those disableds" business as usual again today.
I'm not going to go into depth about everything wrong with his initial remarks because it's already been covered extensively. If you're looking for comment pieces on his original remarks, I recommend this from Frances Ryan, or this from Richard Exell.
The only things I have to add on the subject of his initial statement are these:
- He's not the first Tory to say this during this term of government. Philip Davies said the same thing in 2011. Then there is Cllr David Scott who raised the idea of us being not "worth" it with Freud. It's starting to seem like a common thought in the Conservative party.
- Disabled people make more reliable employees than non-disabled people. A report by DePaul University in the US found that disabled people stay with an employer for longer, take less time off, and are "loyal, reliable, and hardworking.". That doesn't sound to me like people who are "not worth" even the minimum wage, does it?
- Disabled people currently in work are having their ability to do their job screwed about with by the hideous mess this coalition have made of Access to Work. Read Julie's and Jess's accounts. These are people worth more than the minimum wage, having their capability undermined by an incompetent government.
- Over 50,000 disabled people in work may be forced to quit their job by DLA cuts. Again, people who are perfectly good at their jobs being prevented from functioning by a government that aren't good at their jobs.
What interests me more is Freud's piss-take of an apology. He said:
I care passionately about disabled people. I am proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment. That is why through Universal Credit – which I referred to in my response – we have increased overall spending on disabled households by £250m, offered the most generous work allowance ever, and increased the disability addition to £360 per month.
From Spectator Coffeehouse.
We all know that he doesn't give a toss about disabled people. Increased spending on disabled households? Tell that to the 394,000 people waiting for their ESA claim to be processed so they can put food on the table. Or the 145,000 people waiting for their PIP claim to be processed so they can afford to pay for a wheelchair or for someone to get them out of bed in the morning. Or the bedroom tax victims: Three quarters of whom have a disabled person in the family. Or the people who currently get DLA because they're only capable of walking less than 50 metres, but will lose it under PIP because they can walk more than 20 metres. Or all the terminally ill people who've been deemed "fit for work" like Larry Newman or Cecilia Burns.
And as for Universal Credit increasing spending on disabled households: They're abolishing the Severe Disability Premium under UC. Not replacing it with something a bit stricter - like the move from DLA to PIP - they're just abolishing it. The country's 230,000 most severely disabled people will be significantly worse off under Universal Credit.
While it's great that the mainstream media are - for a change - coming to disabled people's defence over Freud's original remarks: Why are they accepting his apology without delving into the outright lies it contains?
Edit 16/10/14: Yet another Tory thinks the minimum wage is "A barrier to work". She too presumably was complicit in the DLA cuts which will force disabled people to quit work (the Tories were whipped to vote for cuts.)
Anyone who denies that the minimum wage is a barrier to employment for the less able is living in cloud cuckoo land.
— Jackie Doyle-Price (@JackieDP) October 16, 2014Even Mr Money Saving Expert himself thinks disabled people should be exempt from the minimum wage:
Just read what Lord Freud actually said and mostly agree. We need Labour market flexibility to help the v few whose disability means (contd)
— Martin Lewis (@MartinSLewis) October 16, 2014... they won't get work at minimum wage. Some with severe mental capacity problems will never gain work on level playing field. Helps needed
— Martin Lewis (@MartinSLewis) October 16, 2014Remember yesterday when people thought disabled people were worth it? What a great day. Shame it's "shit on those disableds" business as usual again today.
Sunday, 5 October 2014
Taxing Disability
Not satisfied with canning the lowest rate of Disability Living Allowance (DLA) care, or reducing the distance one can walk from 50m to 20m in order to be able to qualify for its successor benefit Personal Independence Payment (PIP): Iain Duncan Smith now wants to tax DLA and PIP.
The Independent writes:
Which on the surface seems fair. I mean, the independently wealthy David Cameron didn't need DLA to buy the basics like wheelchairs for Ivan in the same way that my parents needed it to buy a wheelchair for me, right? He could afford them anyway, without needing extra money to cover the extra costs arising from being disabled.
But there are 4 fundamental problems with this plan. (Which the Indy does note IDS has spoken "on the issue but no official policy announcement has been made.")
1) This won't just apply to millionaires
Yes it is true that more disabled people live in poverty than non-disabled people. A great many disabled people are broke.
But just because someone's earning enough to pay income tax doesn't mean they can miraculously afford to cover all impairment-related costs. It's estimated that being disabled costs on average an extra £550 a month. It's only people on the highest rates of both care and mobility components of the benefit that get more than £550 a month in DLA/PIP (and they only get £2.20 more than that figure of £550). Most people on DLA/PIP are getting far less than £550 a month to cover their extra costs already; they simply can't afford to have money deducted from a benefit that's already not enough to meet their needs.
If you do get the highest rates of both components because you need assistance 24/7 (if you only need help during your waking hours the highest rate care DLA you're eligible for is the middle rate) that comes to £7,178.60 a year. Meaning that you can only earn £2,821.40 in wages before you have to start paying tax.
Even if you only get the lowest rate of £21.55 a week that comes to £1,120.6 a year; meaning that you have to start paying tax after earning £8,879.40.
In other words: Non-disabled people will have a personal tax allowance of £10,000. Disabled people will have a considerably lower allowance on what they're allowed to earn before tax gets deducted from their wages. Equal, huh?
Many disabled people don't even see a penny of their DLA. With the care component taken by the council to pay for someone to get them dressed in the morning, and the mobility component taken by Motability to pay for a mobility aid - whether that's a car, a scooter, or a wheelchair - we're going to see people taxed on money they're not receiving. They can't deduce the tax from the money they're getting in benefit because they're not getting a penny of it.
2) It will hit those on the lowest incomes too
Contributory Employment and Support Allowance, Incapacity Benefit, and JobSeeker's Allowance are all taxable. If the only taxable income you have in a year is cESA; your income will not be enough to pay tax on. At the moment pretty much the only time you'd be paying tax on ESA would be if you'd worked for the first half of the tax year and hit that taxable threshold, and then developed an illness like cancer and had to claim cESA for the second half of the year.
But if DLA/PIP become taxable income too; there's the chance that your combination of ESA and DLA will push you over the personal tax allowance. IDS is lying if he claims this is about making sure those on the lowest income get the most support.
3) Disabled people in work will be pushed out of work
The Disability Benefits Consortium found that over 50,000 disabled people currently in work would have to give up work if they lost their DLA. If DLA pays for someone to get you out of bed in the morning to go to work: You can't work if that DLA is stopped. If DLA pays for your wheelchair to get you to work: You can't get to work if your DLA is stopped.
While taxability is only going to equate to a maximum of 45p in every pound for the highest rate taxpayers; almost all disabled people in work will see bites taken out of their DLA because of the fact that they'll have a smaller personal allowance as I mentioned under point 1. For a lot of people it will be the difference between having help to get out of bed in the morning, and not having help to get out of bed in the morning. For some it will be the difference between having a wheelchair and not having a wheelchair.
The "senior government source" claimed that taxing DLA would raise "several billions". A not very clever senior government source who doesn't have the ability to realise the amount this policy is going to cost them in out-of-work benefits for all the disabled people forced to quit their jobs.
4) It undermines the universality of the welfare state
Yeah, some rich people partake of "legal tax avoidance schemes". But those that do pay their tax know that they're investing in their own future, not just benevolently giving to others. They know that when they reach 65, they'll be eligible for a state pension because it's universal. They know that if they develop cancer, or their heart starts to fail: They'll be eligible to claim contributory ESA because it's universal. They know that if they break their spine in a car accident; they'd be eligible for DLA/PIP to pay for a wheelchair, or for someone to wipe their butt if they have a high level injury and lose the use of their arms.
Yes, under this scheme they'll still be eligible for DLA/PIP; just less of it. It might be the difference between getting their whole £550 extra costs met, or only part of them.
DLA/PIP is fair because it says "we recognise that being disabled is expensive. It doesn't matter if you're comfortably off; we think those extra costs are unfair so we're levelling the playing field for all disabled people." DLA was fair to the Cameron family in meeting some of their extra costs. Extra costs introduced by a discriminatory society that places financial burdens on disabled people that just aren't placed on non-disabled people.
But the "government source" did have a point...
In addition to the universal DLA available to rich disabled people and poor disabled people alike; there currently is some extra financial help available to the poorest of disabled people called the Severe Disability Premium (SDP). SDP isn't a whole benefit on it's own; it's a top-up premium for those getting either Income Support or means-tested ESA. The SDP is being scrapped under Universal Credit.
Until Iain Duncan Smith came plundering along with his incompetency; it was never, ever, the case that disabled people on the lowest incomes got the same as disabled millionaires. It's only now that he's come along with no experience or insight that poor disabled people and rich disabled people will get the same because of his abolition of the SDP.
While I think it's fair that rich disabled people should get DLA because they're still hit with bills that their non-disabled peers don't; the reality is that families with fortunes like the Camerons aren't going to be affected by this cut at all. It's just a drop in the ocean to them. The people who are going to be hit hardest are the disabled people earning £4000 a year who'll suddenly be getting a tax bill because their DLA pushes them over the personal allowance. The people with cancer on DLA and ESA who'll find that those 2 benefits combined will push them over the personal allowance. The disabled people who have to quit the job they love because they can no longer afford to pay for someone to help them out of bed in the morning.
The rich disabled people will just indulge in schemes like those partaken of by people like Jimmy Carr and Gary Barlow. The people who'll really be hurt by these policies will be those who can afford it least. Remember that when the DWP insist that it's a tax only for rich disabled people.
The Independent writes:
A government source said to the paper: “It cannot be right that those on the lowest incomes get the same disability benefits as those who are millionaires.
Which on the surface seems fair. I mean, the independently wealthy David Cameron didn't need DLA to buy the basics like wheelchairs for Ivan in the same way that my parents needed it to buy a wheelchair for me, right? He could afford them anyway, without needing extra money to cover the extra costs arising from being disabled.
But there are 4 fundamental problems with this plan. (Which the Indy does note IDS has spoken "on the issue but no official policy announcement has been made.")
1) This won't just apply to millionaires
Yes it is true that more disabled people live in poverty than non-disabled people. A great many disabled people are broke.
But just because someone's earning enough to pay income tax doesn't mean they can miraculously afford to cover all impairment-related costs. It's estimated that being disabled costs on average an extra £550 a month. It's only people on the highest rates of both care and mobility components of the benefit that get more than £550 a month in DLA/PIP (and they only get £2.20 more than that figure of £550). Most people on DLA/PIP are getting far less than £550 a month to cover their extra costs already; they simply can't afford to have money deducted from a benefit that's already not enough to meet their needs.
If you do get the highest rates of both components because you need assistance 24/7 (if you only need help during your waking hours the highest rate care DLA you're eligible for is the middle rate) that comes to £7,178.60 a year. Meaning that you can only earn £2,821.40 in wages before you have to start paying tax.
Even if you only get the lowest rate of £21.55 a week that comes to £1,120.6 a year; meaning that you have to start paying tax after earning £8,879.40.
In other words: Non-disabled people will have a personal tax allowance of £10,000. Disabled people will have a considerably lower allowance on what they're allowed to earn before tax gets deducted from their wages. Equal, huh?
Many disabled people don't even see a penny of their DLA. With the care component taken by the council to pay for someone to get them dressed in the morning, and the mobility component taken by Motability to pay for a mobility aid - whether that's a car, a scooter, or a wheelchair - we're going to see people taxed on money they're not receiving. They can't deduce the tax from the money they're getting in benefit because they're not getting a penny of it.
2) It will hit those on the lowest incomes too
Contributory Employment and Support Allowance, Incapacity Benefit, and JobSeeker's Allowance are all taxable. If the only taxable income you have in a year is cESA; your income will not be enough to pay tax on. At the moment pretty much the only time you'd be paying tax on ESA would be if you'd worked for the first half of the tax year and hit that taxable threshold, and then developed an illness like cancer and had to claim cESA for the second half of the year.
But if DLA/PIP become taxable income too; there's the chance that your combination of ESA and DLA will push you over the personal tax allowance. IDS is lying if he claims this is about making sure those on the lowest income get the most support.
3) Disabled people in work will be pushed out of work
The Disability Benefits Consortium found that over 50,000 disabled people currently in work would have to give up work if they lost their DLA. If DLA pays for someone to get you out of bed in the morning to go to work: You can't work if that DLA is stopped. If DLA pays for your wheelchair to get you to work: You can't get to work if your DLA is stopped.
While taxability is only going to equate to a maximum of 45p in every pound for the highest rate taxpayers; almost all disabled people in work will see bites taken out of their DLA because of the fact that they'll have a smaller personal allowance as I mentioned under point 1. For a lot of people it will be the difference between having help to get out of bed in the morning, and not having help to get out of bed in the morning. For some it will be the difference between having a wheelchair and not having a wheelchair.
The "senior government source" claimed that taxing DLA would raise "several billions". A not very clever senior government source who doesn't have the ability to realise the amount this policy is going to cost them in out-of-work benefits for all the disabled people forced to quit their jobs.
4) It undermines the universality of the welfare state
Yeah, some rich people partake of "legal tax avoidance schemes". But those that do pay their tax know that they're investing in their own future, not just benevolently giving to others. They know that when they reach 65, they'll be eligible for a state pension because it's universal. They know that if they develop cancer, or their heart starts to fail: They'll be eligible to claim contributory ESA because it's universal. They know that if they break their spine in a car accident; they'd be eligible for DLA/PIP to pay for a wheelchair, or for someone to wipe their butt if they have a high level injury and lose the use of their arms.
Yes, under this scheme they'll still be eligible for DLA/PIP; just less of it. It might be the difference between getting their whole £550 extra costs met, or only part of them.
DLA/PIP is fair because it says "we recognise that being disabled is expensive. It doesn't matter if you're comfortably off; we think those extra costs are unfair so we're levelling the playing field for all disabled people." DLA was fair to the Cameron family in meeting some of their extra costs. Extra costs introduced by a discriminatory society that places financial burdens on disabled people that just aren't placed on non-disabled people.
But the "government source" did have a point...
In addition to the universal DLA available to rich disabled people and poor disabled people alike; there currently is some extra financial help available to the poorest of disabled people called the Severe Disability Premium (SDP). SDP isn't a whole benefit on it's own; it's a top-up premium for those getting either Income Support or means-tested ESA. The SDP is being scrapped under Universal Credit.
Until Iain Duncan Smith came plundering along with his incompetency; it was never, ever, the case that disabled people on the lowest incomes got the same as disabled millionaires. It's only now that he's come along with no experience or insight that poor disabled people and rich disabled people will get the same because of his abolition of the SDP.
While I think it's fair that rich disabled people should get DLA because they're still hit with bills that their non-disabled peers don't; the reality is that families with fortunes like the Camerons aren't going to be affected by this cut at all. It's just a drop in the ocean to them. The people who are going to be hit hardest are the disabled people earning £4000 a year who'll suddenly be getting a tax bill because their DLA pushes them over the personal allowance. The people with cancer on DLA and ESA who'll find that those 2 benefits combined will push them over the personal allowance. The disabled people who have to quit the job they love because they can no longer afford to pay for someone to help them out of bed in the morning.
The rich disabled people will just indulge in schemes like those partaken of by people like Jimmy Carr and Gary Barlow. The people who'll really be hurt by these policies will be those who can afford it least. Remember that when the DWP insist that it's a tax only for rich disabled people.
Wednesday, 5 February 2014
#BigBenefitsRow
On Monday night, Peter Stringfellow pointed to Mik, MJ and me on live TV and said:
Apparently what we didn't deserve was a place at the grown up table to discuss the issues that affect us. Sue has blogged about how she was pulled from the line up with 2 hours notice. meaning there were no benefit-claiming disabled experts to talk about the cuts. People have pointed out that White Dee claims ESA for depression; so there was at least one disabled person on the panel. But firstly, we don't know if she identifiess as "disabled". It's possible she doesn't because so many people view being disabled as such an horrific and revolting thing. Secondly she claims benefits; but she's not an expert on them. People like Sue and me are. We can tell you the fraud rates for disability benefits off the top of our heads. We can gives you names of people who died from their conditions while supposedly "fit for work".
(OK, I know I'd never get invited to be on the panel if there was literally anybody else available. Media types only call me when their first choice is unavailable. I know I'm not cool or popular or particularly liked among the prominent left. And that's OK; I've never been popular and I'm used to it.)
But given that disabled people are more hit by the cuts than any other group of people; they shouldn't have just kept Sue and Dee in the line-up: They should have had additional disabled people up there too. There's a saying among disability rights activists that's been around as long as I can remember; it's possible the statement is older than I am. That saying is "nothing about us without us". And Monday night's debate was almost exclusively about us, but apart from Dee (and Mik managing to get about 3 seconds of soundbite out) it was definitely without us.
But I want to go back to Stringfellow's comments about what we "deserve" and what we "get".
When he said it; I laughed. Loudly. But then I always laugh loudly. My laugh carries for miles; just ask most of this country's comedians. I laughed so loudly that it was my only verbal ejaculation of the evening that was picked up by the microphones. (And I really put effort into heckling in an attempt to be heard; the laugh was just my normal laugh.)
I laughed because the support we get is being cut to the bone. Employment and Support Allowance cuts, Disability Living Allowance cuts, council tax benefit cuts, the bedroom tax, severe disability premium cuts, social care cuts, NHS cuts. Do we deserve that?
What we do currently get - and what we get an increase in every time papers run front pages calling us "scroungers" - is hate.
Disabled people get called "scrounging cunt" in the street for going out while visibly disabled. WtB's Pippa got followed home by someone shouting "fucking DLA stick.". I've been told that I should have been killed at birth to save the taxpayer money.
What we get is told that we're not allowed nice things. When I first got an iPhone I sustained abuse for it. The person abusing me didn't care that it was a Christmas present to replace my broken CrapBerry; disabled people are simply not allowed to own nice things. The media has an obsession with benefit claimants and the size of our TVs. Last autumn I had a TV crew in my living room. Before I was willing to start talking to camera I made them show me the shot so I was sure my telly couldn't be seen. My TV is shit: You can't have the aerial cable and an HDMI cable plugged in at the same time or they cause each other interference. But you can't see the fault from just looking at it (unless you're trying to watch a DVD with the aerial cable plugged in), so if my telly had been shown during my 4thought; the next day the Daily Mail's front page would've said "outrage as benefit claimant owns flat screen TV." Poor people owning stuff really seems to get under people's skin; no matter the circumstances in which they acquired said things.
There have even been cases of people who don't claim a penny in benefits getting abuse for being "scroungers" for merely looking disabled.
Do we deserve that?
Do we deserve to never be able to afford holidays? To only be able to afford Primark clothes? To not be able to upgrade to a TV without a fault? To know that this financial struggle is going to last your whole life because you're an "incurable"?
Katie Hopkins kept claiming that she was there to represent "hard working Britain". What about the 58 year old with cancer who has been working hard and paying National Insurance premiums for 40 years, but has just been refused ESA? That is the whole point of National Insurance. Because disabled people weren't allowed to be part of the debate; no-one pointed out that the system is there precisely to protect hard working Britons.
Hopkins also brought up the number of people being found "fit for work": Because there were no experts on disability benefits on the panel; no-one pointed out that that includes fatally ill people like Larry Newman or Cecilia Burns. I tried heckling "that includes terminally ill people!" But when I watched the show back, I realised that I hadn't been picked up by any of the mics around the room.
She then went on to claim that chancers are pulling out of the ESA process before being assessed by Atos because they're frightened of being caught out. There are all sorts of reasons people stop their claims, including dying. Again I tried heckling "that includes people who've died!" But again went unheard by the audience at home.
Coming from a stand up background, I hate hecklers. I hated having to heckle. But seeing as the producers wouldn't let any disabled people up on the stage to rebut these distorted claims, I was left with no choice but to try shouting.
Before the cameras started rolling, the floor manager told us that if we had something to say; we should say it. She said she didn't want people to leave feeling that they'd not had their voices heard. The lack of disabled people's representation up on that stage meant that voices like mine weren't heard. With the exception of Dee, Jack Monroe and Annabel Giles; the voices we heard from were people who have no idea how miserable life on benefits is, and how cruel people can be to those perceived as "scroungers". Yes, a couple of other people said that they know people on benefits and are aware of their struggles; but trust me: Unless you've lived this, you really don't know just how horrific it feels.
Benefits Street might have made this country obsessed with talking about benefits. It might have made benefits issues a guaranteed ratings winner. But unless you let the people affected by these issues use their own voices in these debates; you've just got people pointlessly arguing for an hour. 'Nothing about us without us' my backside.
I'm looking at people over there who obviously deserve everything they can get.
Apparently what we didn't deserve was a place at the grown up table to discuss the issues that affect us. Sue has blogged about how she was pulled from the line up with 2 hours notice. meaning there were no benefit-claiming disabled experts to talk about the cuts. People have pointed out that White Dee claims ESA for depression; so there was at least one disabled person on the panel. But firstly, we don't know if she identifiess as "disabled". It's possible she doesn't because so many people view being disabled as such an horrific and revolting thing. Secondly she claims benefits; but she's not an expert on them. People like Sue and me are. We can tell you the fraud rates for disability benefits off the top of our heads. We can gives you names of people who died from their conditions while supposedly "fit for work".
(OK, I know I'd never get invited to be on the panel if there was literally anybody else available. Media types only call me when their first choice is unavailable. I know I'm not cool or popular or particularly liked among the prominent left. And that's OK; I've never been popular and I'm used to it.)
But given that disabled people are more hit by the cuts than any other group of people; they shouldn't have just kept Sue and Dee in the line-up: They should have had additional disabled people up there too. There's a saying among disability rights activists that's been around as long as I can remember; it's possible the statement is older than I am. That saying is "nothing about us without us". And Monday night's debate was almost exclusively about us, but apart from Dee (and Mik managing to get about 3 seconds of soundbite out) it was definitely without us.
But I want to go back to Stringfellow's comments about what we "deserve" and what we "get".
When he said it; I laughed. Loudly. But then I always laugh loudly. My laugh carries for miles; just ask most of this country's comedians. I laughed so loudly that it was my only verbal ejaculation of the evening that was picked up by the microphones. (And I really put effort into heckling in an attempt to be heard; the laugh was just my normal laugh.)
I laughed because the support we get is being cut to the bone. Employment and Support Allowance cuts, Disability Living Allowance cuts, council tax benefit cuts, the bedroom tax, severe disability premium cuts, social care cuts, NHS cuts. Do we deserve that?
What we do currently get - and what we get an increase in every time papers run front pages calling us "scroungers" - is hate.
Disabled people get called "scrounging cunt" in the street for going out while visibly disabled. WtB's Pippa got followed home by someone shouting "fucking DLA stick.". I've been told that I should have been killed at birth to save the taxpayer money.
What we get is told that we're not allowed nice things. When I first got an iPhone I sustained abuse for it. The person abusing me didn't care that it was a Christmas present to replace my broken CrapBerry; disabled people are simply not allowed to own nice things. The media has an obsession with benefit claimants and the size of our TVs. Last autumn I had a TV crew in my living room. Before I was willing to start talking to camera I made them show me the shot so I was sure my telly couldn't be seen. My TV is shit: You can't have the aerial cable and an HDMI cable plugged in at the same time or they cause each other interference. But you can't see the fault from just looking at it (unless you're trying to watch a DVD with the aerial cable plugged in), so if my telly had been shown during my 4thought; the next day the Daily Mail's front page would've said "outrage as benefit claimant owns flat screen TV." Poor people owning stuff really seems to get under people's skin; no matter the circumstances in which they acquired said things.
There have even been cases of people who don't claim a penny in benefits getting abuse for being "scroungers" for merely looking disabled.
Do we deserve that?
Do we deserve to never be able to afford holidays? To only be able to afford Primark clothes? To not be able to upgrade to a TV without a fault? To know that this financial struggle is going to last your whole life because you're an "incurable"?
Katie Hopkins kept claiming that she was there to represent "hard working Britain". What about the 58 year old with cancer who has been working hard and paying National Insurance premiums for 40 years, but has just been refused ESA? That is the whole point of National Insurance. Because disabled people weren't allowed to be part of the debate; no-one pointed out that the system is there precisely to protect hard working Britons.
Hopkins also brought up the number of people being found "fit for work": Because there were no experts on disability benefits on the panel; no-one pointed out that that includes fatally ill people like Larry Newman or Cecilia Burns. I tried heckling "that includes terminally ill people!" But when I watched the show back, I realised that I hadn't been picked up by any of the mics around the room.
She then went on to claim that chancers are pulling out of the ESA process before being assessed by Atos because they're frightened of being caught out. There are all sorts of reasons people stop their claims, including dying. Again I tried heckling "that includes people who've died!" But again went unheard by the audience at home.
Coming from a stand up background, I hate hecklers. I hated having to heckle. But seeing as the producers wouldn't let any disabled people up on the stage to rebut these distorted claims, I was left with no choice but to try shouting.
Before the cameras started rolling, the floor manager told us that if we had something to say; we should say it. She said she didn't want people to leave feeling that they'd not had their voices heard. The lack of disabled people's representation up on that stage meant that voices like mine weren't heard. With the exception of Dee, Jack Monroe and Annabel Giles; the voices we heard from were people who have no idea how miserable life on benefits is, and how cruel people can be to those perceived as "scroungers". Yes, a couple of other people said that they know people on benefits and are aware of their struggles; but trust me: Unless you've lived this, you really don't know just how horrific it feels.
Benefits Street might have made this country obsessed with talking about benefits. It might have made benefits issues a guaranteed ratings winner. But unless you let the people affected by these issues use their own voices in these debates; you've just got people pointlessly arguing for an hour. 'Nothing about us without us' my backside.
Tuesday, 5 February 2013
A monumental day for equality #equalmarriage #pip
You'd have to be stranded on the island from Lost to not know that MPs were debating marriage equality in the House of Commons today.
But what might have escaped your attention was the Select Committee debate discussing the descriptors for Personal Independence Payment (PIP). It only affects us poxy disableds, of course. Someone questioned whether the scheduling was intentional; to sweep PIP changes through when all eyes were on equal marriage. But I doubt it. Everyone would have ignored PIP even on a day where there was no other news whatsoever and the press were reduced to reporting on toasted sandwiches that looked a bit like Jesus if you squinted in the right way.
They voted 10 - 7 to remove any help with mobility for disabled people who can walk more than 20 metres. So if you can walk 21 metres - which is probably the distance from your bed to your front door going via the bathroom for a wee then the kitchen for some breakfast - you can no longer get financial help towards a car or wheelchair that would allow you to get out of the front door to go to work.
I'd love the right to legally get married, I really would. But it all seems a bit pointless to me right now. Maybe that's because I'm feeling low having spent the afternoon alternately listening to disablist MPs talking about why they hate me and homophobic MPs talking about why they hate me. But I think mainly it feels pointless because with the move from DLA to PIP probably leaving me housebound I'm never actually going to be able to go out and meet a potential wife.
But what might have escaped your attention was the Select Committee debate discussing the descriptors for Personal Independence Payment (PIP). It only affects us poxy disableds, of course. Someone questioned whether the scheduling was intentional; to sweep PIP changes through when all eyes were on equal marriage. But I doubt it. Everyone would have ignored PIP even on a day where there was no other news whatsoever and the press were reduced to reporting on toasted sandwiches that looked a bit like Jesus if you squinted in the right way.
They voted 10 - 7 to remove any help with mobility for disabled people who can walk more than 20 metres. So if you can walk 21 metres - which is probably the distance from your bed to your front door going via the bathroom for a wee then the kitchen for some breakfast - you can no longer get financial help towards a car or wheelchair that would allow you to get out of the front door to go to work.
I'd love the right to legally get married, I really would. But it all seems a bit pointless to me right now. Maybe that's because I'm feeling low having spent the afternoon alternately listening to disablist MPs talking about why they hate me and homophobic MPs talking about why they hate me. But I think mainly it feels pointless because with the move from DLA to PIP probably leaving me housebound I'm never actually going to be able to go out and meet a potential wife.
Friday, 23 March 2012
Budget 2012: the disabled marginalised yet again, with worse to come?
Yesterday's budget contained a kick in the teeth for disabled people, quickly followed by a punch in the face.
The Chancellor's retreat on child benefit, moving the threshold for ineligibility from those earning over £43,000 to those earning over £60,000, was a bare-faced example of the Government looking after its own voters. When the planned benefit cut was announced last year there were howls of outrage amongst higher rate earners, and the Tories, mindful an election has to be fought in perhaps two years time, decided to try and save their own skins.
How is this relevant to disabled people?
When the recent Welfare reform Bill passed through the House of Lords, three defeats were enacted on the Government as the Lords chose to make changes that they believed would safe-guard some of the most sick and disabled in the country. One of those changes was to extend the length of time that people on contributory-based Employment Support Allowance could claim the benefit. The Government proposed that those people place in the Working Capability Group of ESA (so claimants who are too ill to work but should be able to in the future) could only claim the benefit for a year. The Lords voted to extend this to two years to ensure that people had enough time to get better before being forced into work. Macmillan cancer support for example argued that annually 7.000 cancer patients, routinely placed in the Working group of ESA, take longer than 12 months to recover.
Although the Lords followed due democratic process to enact these changes, they have not come into force. The Government used 'financial privilege' to block these amendments. In short, MPs cried "Sorry, no money!" and did so in a way that has seen no precedent.
But suddenly come budget day, the Government discovered a stash of cash to save the child benefit of higher rate tax-payers, those who are doing ok in life, and yet still no money to extend ESA for those who are too sick to work through no fault of their own. More worryingly for democracy, the Government places greater value on the opinion of its voters then on the democratic process of a Bill being passed into law.
The second fear hidden in the budget was Osborne's casual mention that Ian Duncan Smith would have to find a further £10 billion of welfare cuts on top of the £18 billion already slashed from these bills. The biggest slice of welfare is spent on old age - with today's vicious headlines about a granny tax I can't see the Government making any further cuts to pensioners. Child benefit cuts now seem completely off the table, a decision that Ian Duncan Smith may come to resent Osborne for as he frantically tries to cut £10 billion.
So where can more cuts be found? Housing benefit perhaps, childcare credits even, but a clear forerunner would be disability benefits. Disability Living Allowance is already scheduled to be scrapped next year, and replaced by Personal Independence Payments (PIP). In the Government's last spending review it arbitrarily decided to cut recipients of PIP by 20%, before it had even decided the criteria for eligibility or assessed the needs of a single disabled person.
What's the betting that in the next spending review the Government decides to save 25% or even 30% from the PIP bill? I, for one, am very worried.
As first published on nhsbuff
The Chancellor's retreat on child benefit, moving the threshold for ineligibility from those earning over £43,000 to those earning over £60,000, was a bare-faced example of the Government looking after its own voters. When the planned benefit cut was announced last year there were howls of outrage amongst higher rate earners, and the Tories, mindful an election has to be fought in perhaps two years time, decided to try and save their own skins.
How is this relevant to disabled people?
When the recent Welfare reform Bill passed through the House of Lords, three defeats were enacted on the Government as the Lords chose to make changes that they believed would safe-guard some of the most sick and disabled in the country. One of those changes was to extend the length of time that people on contributory-based Employment Support Allowance could claim the benefit. The Government proposed that those people place in the Working Capability Group of ESA (so claimants who are too ill to work but should be able to in the future) could only claim the benefit for a year. The Lords voted to extend this to two years to ensure that people had enough time to get better before being forced into work. Macmillan cancer support for example argued that annually 7.000 cancer patients, routinely placed in the Working group of ESA, take longer than 12 months to recover.
Although the Lords followed due democratic process to enact these changes, they have not come into force. The Government used 'financial privilege' to block these amendments. In short, MPs cried "Sorry, no money!" and did so in a way that has seen no precedent.
But suddenly come budget day, the Government discovered a stash of cash to save the child benefit of higher rate tax-payers, those who are doing ok in life, and yet still no money to extend ESA for those who are too sick to work through no fault of their own. More worryingly for democracy, the Government places greater value on the opinion of its voters then on the democratic process of a Bill being passed into law.
The second fear hidden in the budget was Osborne's casual mention that Ian Duncan Smith would have to find a further £10 billion of welfare cuts on top of the £18 billion already slashed from these bills. The biggest slice of welfare is spent on old age - with today's vicious headlines about a granny tax I can't see the Government making any further cuts to pensioners. Child benefit cuts now seem completely off the table, a decision that Ian Duncan Smith may come to resent Osborne for as he frantically tries to cut £10 billion.
So where can more cuts be found? Housing benefit perhaps, childcare credits even, but a clear forerunner would be disability benefits. Disability Living Allowance is already scheduled to be scrapped next year, and replaced by Personal Independence Payments (PIP). In the Government's last spending review it arbitrarily decided to cut recipients of PIP by 20%, before it had even decided the criteria for eligibility or assessed the needs of a single disabled person.
What's the betting that in the next spending review the Government decides to save 25% or even 30% from the PIP bill? I, for one, am very worried.
As first published on nhsbuff
Monday, 19 March 2012
The Government’s disability strategy out of touch with the reality of cuts
Earlier this month the Government ended its consultation period asking disabled people to help develop its disability strategy. Maria Miller, minister for disabled people, has said that: “The Government is committed to enabling disabled people to fulfil their potential and have the opportunity to play a full role in their community”. But in reality it is clear that the Government lacks any cohesive policy that will enable this to happen.
In the last three years 31 people have died while awaiting appeals against Employment and Support Allowance (ESA) medicals that had found them fit to work. At their most vulnerable, the sick and disabled were left worrying to the day they died about how they and their family would cope financially while their illness was slowly killing them. Society should be in uproar that people in dire need turned to the state for help and were failed by it, but instead media and Government debate focuses on disabled ‘scroungers’, further isolating the disabled from their communities.
Yet while it could be argued in the case of ESA that Government incompetence is forcing disabled people into hardship, the same cannot be said for Personal Independence Payments (PIP), the new benefit that is replacing Disability Living Allowance (DLA). Under PIP eligibility rules, even if you cannot walk more than 50 metres and need a wheelchair to get about for any longer distances, a disabled person still won’t be eligible for higher rate mobility – which in short means they will most likely lose access to a car through the motability scheme and the freedom such a vehicle gives them that their body cannot.
By cold-hearted design, these ‘independence payments’ will in fact take independence away from severely disabled people and force them to remain in their homes. No wonder Lady Grey-Thompson, speaking to the Guardian last month, said: “I worry that it is going to become the way it was when I was young where you just didn’t see disabled people on the street because they were locked away.”
These aren’t the only cuts aimed at disabled people. The Department of Work and Pensions’ own analysis into the housing benefit reforms states that 450,000 disabled people will face cuts to their allowance under new rules. 78,000 disabled people who use legal aid to appeal against decisions to deny them benefit will lose this support under Ken Clarke’s reforms. The Independent Living Fund (ILF) has been entirely closed to new claimants and by 2015 payments to the 21,000 severely disabled people it helps will cease. Tax credits to help with the extra costs of raising a disabled child will be cut from a maximum of £54 a week to £27 a week under Ian Duncan Smith’s Universal Credit changes – cuts that the Children’s Society says will see some families with disabled offspring £1,400 worse off a year. According to a Government Select Committee on Health, nearly two thirds of local authorities in England have reduced their disabled and adult social care budgets. As such councils have drastically altered their criteria for providing care to disabled adults, leaving many people unable to wash and dress themselves properly isolated in their own filth as they are not disabled enough to qualify for care.
These cuts will severely curtail disabled people’s ability to “fulfil their potential”. PIP will actually remove independence from disabled people, the scrapping of ILF will see disabled people condemned to care homes, decisions to limit ESA to one year, leaving 7000 cancer patients without any financial support while they are still too unwell to work, will only help in moving disabled people into poverty, not into the workplace. Cuts to legal aid will take away their voice, housing benefit remove them from often supportive communities and homes that are specially adapted for their needs. Harsh reductions in social care budgets will see people stuck in hospital for longer periods of time as they cannot be discharged into communities because they lack provision for their basic care. Disabled people were already twice as likely to be living in poverty than others before these cuts were imposed: no wonder disabled people up and down the country are scared stiff of these ‘reforms’.
The Government’s consultation document, entitled ‘Fulfilling potential’, makes specific mention of “tackling discrimination” towards disabled people and “promoting positive attitudes”. Yet charities have directly linked a rise in disabled abuse with the increasing rhetoric from Government ministers that disabled people are scrounging off society.
So bad has the Government’s attitude become that disability groups are now questioning whether they can continue to work with it on shaping further welfare reforms.
By the end of this parliament, if all these cuts are implemented, far from disabled people fulfilling their potential, the Coalition would instead have successfully reversed twenty years of advances made in helping the disabled play a valued and active part in society. Shame on all MPs if that is their intention. And if it isn’t, then the Government must wake up to the impact of these cuts, ban negative ministerial rhetoric linking the disabled with ‘scroungers’ and honour its supposed desire to develop policies that give back respect and support to some of the most vulnerable people in society.
Previously published on the blog nhsbuff (apologies for the slow cross posting - illness took my eye off the ball)
In the last three years 31 people have died while awaiting appeals against Employment and Support Allowance (ESA) medicals that had found them fit to work. At their most vulnerable, the sick and disabled were left worrying to the day they died about how they and their family would cope financially while their illness was slowly killing them. Society should be in uproar that people in dire need turned to the state for help and were failed by it, but instead media and Government debate focuses on disabled ‘scroungers’, further isolating the disabled from their communities.
Yet while it could be argued in the case of ESA that Government incompetence is forcing disabled people into hardship, the same cannot be said for Personal Independence Payments (PIP), the new benefit that is replacing Disability Living Allowance (DLA). Under PIP eligibility rules, even if you cannot walk more than 50 metres and need a wheelchair to get about for any longer distances, a disabled person still won’t be eligible for higher rate mobility – which in short means they will most likely lose access to a car through the motability scheme and the freedom such a vehicle gives them that their body cannot.
By cold-hearted design, these ‘independence payments’ will in fact take independence away from severely disabled people and force them to remain in their homes. No wonder Lady Grey-Thompson, speaking to the Guardian last month, said: “I worry that it is going to become the way it was when I was young where you just didn’t see disabled people on the street because they were locked away.”
These aren’t the only cuts aimed at disabled people. The Department of Work and Pensions’ own analysis into the housing benefit reforms states that 450,000 disabled people will face cuts to their allowance under new rules. 78,000 disabled people who use legal aid to appeal against decisions to deny them benefit will lose this support under Ken Clarke’s reforms. The Independent Living Fund (ILF) has been entirely closed to new claimants and by 2015 payments to the 21,000 severely disabled people it helps will cease. Tax credits to help with the extra costs of raising a disabled child will be cut from a maximum of £54 a week to £27 a week under Ian Duncan Smith’s Universal Credit changes – cuts that the Children’s Society says will see some families with disabled offspring £1,400 worse off a year. According to a Government Select Committee on Health, nearly two thirds of local authorities in England have reduced their disabled and adult social care budgets. As such councils have drastically altered their criteria for providing care to disabled adults, leaving many people unable to wash and dress themselves properly isolated in their own filth as they are not disabled enough to qualify for care.
These cuts will severely curtail disabled people’s ability to “fulfil their potential”. PIP will actually remove independence from disabled people, the scrapping of ILF will see disabled people condemned to care homes, decisions to limit ESA to one year, leaving 7000 cancer patients without any financial support while they are still too unwell to work, will only help in moving disabled people into poverty, not into the workplace. Cuts to legal aid will take away their voice, housing benefit remove them from often supportive communities and homes that are specially adapted for their needs. Harsh reductions in social care budgets will see people stuck in hospital for longer periods of time as they cannot be discharged into communities because they lack provision for their basic care. Disabled people were already twice as likely to be living in poverty than others before these cuts were imposed: no wonder disabled people up and down the country are scared stiff of these ‘reforms’.
The Government’s consultation document, entitled ‘Fulfilling potential’, makes specific mention of “tackling discrimination” towards disabled people and “promoting positive attitudes”. Yet charities have directly linked a rise in disabled abuse with the increasing rhetoric from Government ministers that disabled people are scrounging off society.
So bad has the Government’s attitude become that disability groups are now questioning whether they can continue to work with it on shaping further welfare reforms.
By the end of this parliament, if all these cuts are implemented, far from disabled people fulfilling their potential, the Coalition would instead have successfully reversed twenty years of advances made in helping the disabled play a valued and active part in society. Shame on all MPs if that is their intention. And if it isn’t, then the Government must wake up to the impact of these cuts, ban negative ministerial rhetoric linking the disabled with ‘scroungers’ and honour its supposed desire to develop policies that give back respect and support to some of the most vulnerable people in society.
Previously published on the blog nhsbuff (apologies for the slow cross posting - illness took my eye off the ball)
Tuesday, 10 January 2012
DLA reform and the Spartacus Report
This article was originally posted to FlashSays on 9 January 2012
Today on Twitter you will see many disabled people and charities saying “I support the #SpartacusReport”. So what is this report and what does it mean?
The Spartacus Report is a piece of research, released today, entitled “Responsible Reform”. It looks at responses to a government consultation about replacing Disability Living Allowance. The report was funded and written by disabled people, and we feel it belongs to us.
Disability Living Allowance is an essential payment, made to people with disabling conditions to compensate them for the additional costs of mobility, and/or care. It is paid whether or not the recipient is able to work, and in many cases makes the difference between being able to leave the house – and go to work – or being stuck at home. For more information on how essential DLA is to people, see my previous articles The real difference made by DLA and DLA – the gateway benefit.
In December 2010 the government opened a consultation on replacing DLA with the Personal Independence Payment (PIP). They had already said that 20% of DLA payments had to be cut, although the government’s own figures accepts that less than 1% of claims are fraudulent. So where would these cuts come from?
A response was published by Iain Duncan Smith, secretary of state for work and pensions, in April 2011. This document claimed to outline the responses of the consultation – from over 5000 individuals and 500 organisations – and the government’s reply to it. However, it glossed over the overwhelming opposition to the proposal of PIP.
Something had to be done. Sue Marsh (“suey2y”) and other disability campaigners joined forces. They came up with the “Spartacus report”. The Responsible Reform report gives the truth of the responses, having obtained copies of the organisations’ responses via a Freedom of Information request.
It shows that
• 92% of respondents opposed the proposal to change from 3 different levels of the Care component, to 2 levels
• 87% of respondents opposed the stopping of automatic entitlement to DLA
• 98% opposed changing the qualifying period from having the disabling condition for 3 months, to having it for 6 months before claiming
• 90% opposed the introduction of new face to face assessments
• 92% opposed change to the review system
• 88% said that aids that a person uses should not be considered when assessing them
• 88% opposed a new change-of-circumstance system involving sanctions
• 94% oppose the introduction of compulsory advice and support
• 64% said that one-off costs should be funded by DLA – it is not clear what this question actually involves
• 100% opposed the removal of DLA mobility component for residents of care homes, and the government have since rescinded this
• 99% oppose the removal or streamlining of passporting (i.e. using DLA as a gateway benefit to other services)
• 54% support the sharing of information between departments
In section after section, the conclusion is “The Government fails to respond to the concerns and suggestions of disabled people”.
It is clear that disabled people don’t want DLA to be overhauled or replaced with PIP, not because it isn’t working, but precisely because it is. The government needs to find the money to sustain DLA payments at their current rates, otherwise disabled people will be the ones who pay the price, by being stuck at home unable to afford transport costs, or lost without essential aids, unable to pay for the prepared food they need because they are unable to cook, or unable to fund the care they require. Please do read The real difference made by DLA in order to understand exactly what disabled people stand to lose. It’s more than just independence and dignity.
So what can you do about this? Read the report: Shortened Report - Responsible Reform and Shortened Press Release. If you’re on twitter, show your support using the #SpartacusReport hashtag. Contact your MP saying something like “This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response.” You can contact your MP using the Write to them website.
Even if you are lucky enough not to be disabled yourself or have any disabled relatives, remember that disability can strike anyone. It is just one car crash, or stroke, or fall, away. One in two people will be disabled at some point in their lifetime. You too may find yourself dependent on disability benefits. Can you afford to ignore this report?
Today on Twitter you will see many disabled people and charities saying “I support the #SpartacusReport”. So what is this report and what does it mean?
The Spartacus Report is a piece of research, released today, entitled “Responsible Reform”. It looks at responses to a government consultation about replacing Disability Living Allowance. The report was funded and written by disabled people, and we feel it belongs to us.
Disability Living Allowance is an essential payment, made to people with disabling conditions to compensate them for the additional costs of mobility, and/or care. It is paid whether or not the recipient is able to work, and in many cases makes the difference between being able to leave the house – and go to work – or being stuck at home. For more information on how essential DLA is to people, see my previous articles The real difference made by DLA and DLA – the gateway benefit.
In December 2010 the government opened a consultation on replacing DLA with the Personal Independence Payment (PIP). They had already said that 20% of DLA payments had to be cut, although the government’s own figures accepts that less than 1% of claims are fraudulent. So where would these cuts come from?
A response was published by Iain Duncan Smith, secretary of state for work and pensions, in April 2011. This document claimed to outline the responses of the consultation – from over 5000 individuals and 500 organisations – and the government’s reply to it. However, it glossed over the overwhelming opposition to the proposal of PIP.
Something had to be done. Sue Marsh (“suey2y”) and other disability campaigners joined forces. They came up with the “Spartacus report”. The Responsible Reform report gives the truth of the responses, having obtained copies of the organisations’ responses via a Freedom of Information request.
It shows that
• 92% of respondents opposed the proposal to change from 3 different levels of the Care component, to 2 levels
• 87% of respondents opposed the stopping of automatic entitlement to DLA
• 98% opposed changing the qualifying period from having the disabling condition for 3 months, to having it for 6 months before claiming
• 90% opposed the introduction of new face to face assessments
• 92% opposed change to the review system
• 88% said that aids that a person uses should not be considered when assessing them
• 88% opposed a new change-of-circumstance system involving sanctions
• 94% oppose the introduction of compulsory advice and support
• 64% said that one-off costs should be funded by DLA – it is not clear what this question actually involves
• 100% opposed the removal of DLA mobility component for residents of care homes, and the government have since rescinded this
• 99% oppose the removal or streamlining of passporting (i.e. using DLA as a gateway benefit to other services)
• 54% support the sharing of information between departments
In section after section, the conclusion is “The Government fails to respond to the concerns and suggestions of disabled people”.
It is clear that disabled people don’t want DLA to be overhauled or replaced with PIP, not because it isn’t working, but precisely because it is. The government needs to find the money to sustain DLA payments at their current rates, otherwise disabled people will be the ones who pay the price, by being stuck at home unable to afford transport costs, or lost without essential aids, unable to pay for the prepared food they need because they are unable to cook, or unable to fund the care they require. Please do read The real difference made by DLA in order to understand exactly what disabled people stand to lose. It’s more than just independence and dignity.
So what can you do about this? Read the report: Shortened Report - Responsible Reform and Shortened Press Release. If you’re on twitter, show your support using the #SpartacusReport hashtag. Contact your MP saying something like “This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response.” You can contact your MP using the Write to them website.
Even if you are lucky enough not to be disabled yourself or have any disabled relatives, remember that disability can strike anyone. It is just one car crash, or stroke, or fall, away. One in two people will be disabled at some point in their lifetime. You too may find yourself dependent on disability benefits. Can you afford to ignore this report?
Monday, 9 January 2012
Writers Val McDermid & Kate Long support need consult disabled ppl #spartacusreport
How we treat our vulnerable citizens is a measure of a civilised society. The way to do that is not to make high-handed decisions on their behalf but to consult directly with them about their needs and how those needs can be met. It's surely not too much to ask of a government that constantly tells us we're all in this together.
Val McDermid, best selling crime writer
We are not talking here about providing “luxuries”, or catering to a “lifestyle choice”. People with disabilities are simply asking for their essential needs to be met, a right most non-disabled folk take for granted. Frankly it appals me that this issue is even up for debate. What has happened to our society?"
Kate Long, author
Ally McErlaine, guitarist, Texas on #spartacusreport
I am all for supporting the disabled in society, they are THE most deserving of financial support, having spent some time in a wheelchair myself after my aneurysm 2 years ago I do understand how difficult this is to live with. If we are to be civilised then look after the disabled and old folks too.
Ally McErlaine, guitarist, Texas
Sunday, 18 December 2011
DLA? Denied
This weekend has seen much justifiable outrage at the fact that disability rights activist Sue Marsh has been turned down for DLA.
But many of the comments I've seen seem to think this is an isolated incident of just one genuine claimant getting their application rejected. In fact, according to the table on page 14 of this DWP report from March 2011, in the 2009/10 year 36,000 people appealed their decision and 14,000 people had the decision overturned.
That's 14,000 vindicated Sues per year.
And then there are those who decide not to appeal because they don't have the strength to fight, because they don't have sufficient self-confidence or because struggling on in poverty seems easier than dealing with the bureaucracy. According to the Minister for Disabled People (*cough*) Maria Miller on 6 Sep 2010; records are not available of unclaimed DLA. but it's worth reading the stats for other unclaimed benefits on page 2 of this DWP report. The rate of underpaid other benefits varies from 0.3% to 2.1%.
It's from 2004 so quite outdated, and only looks at unclaimed DLA/AA by people with one condition: Cancer. But this report by Macmillan suggested that at 2004 benefit rates that more than £126.5 million goes unclaimed in a six month period. And that's only people with cancer, and doesn't take any other "disabling" condition into consideration.
Sue's story seems to have shocked people because she put a human face to the real problems faced when claiming benefits. A human face that isn't a Daily Mail-ised version of a disabled person. To help people understand how widespread this problem is I'd really like to hear from more people with similar experiences.
If you've similarly been turned down for DLA despite being a genuine claimant in the 18 months since the coalition came to power, please post your story in the comments of this post. Thanks.
Huge thanks to @queerpup for unearthing statistics for me today. My Google Fu has decided to go on Christmas holidays a few days early.
But many of the comments I've seen seem to think this is an isolated incident of just one genuine claimant getting their application rejected. In fact, according to the table on page 14 of this DWP report from March 2011, in the 2009/10 year 36,000 people appealed their decision and 14,000 people had the decision overturned.
That's 14,000 vindicated Sues per year.
And then there are those who decide not to appeal because they don't have the strength to fight, because they don't have sufficient self-confidence or because struggling on in poverty seems easier than dealing with the bureaucracy. According to the Minister for Disabled People (*cough*) Maria Miller on 6 Sep 2010; records are not available of unclaimed DLA. but it's worth reading the stats for other unclaimed benefits on page 2 of this DWP report. The rate of underpaid other benefits varies from 0.3% to 2.1%.
It's from 2004 so quite outdated, and only looks at unclaimed DLA/AA by people with one condition: Cancer. But this report by Macmillan suggested that at 2004 benefit rates that more than £126.5 million goes unclaimed in a six month period. And that's only people with cancer, and doesn't take any other "disabling" condition into consideration.
Sue's story seems to have shocked people because she put a human face to the real problems faced when claiming benefits. A human face that isn't a Daily Mail-ised version of a disabled person. To help people understand how widespread this problem is I'd really like to hear from more people with similar experiences.
If you've similarly been turned down for DLA despite being a genuine claimant in the 18 months since the coalition came to power, please post your story in the comments of this post. Thanks.
Huge thanks to @queerpup for unearthing statistics for me today. My Google Fu has decided to go on Christmas holidays a few days early.
Saturday, 3 December 2011
Not OK
Suicide and depression have been in the news a lot this week. First footballer Stan Collymore talked openly about his depression. This was followed a day later by news of the suicide of Wales football manager Gary Speed. Then that delightful chap Jeremy Clarkson "joked" on The One Show that trains shouldn't stop for jumpers.
Warning of possible triggers in discussion below the jump:
Warning of possible triggers in discussion below the jump:
Tuesday, 29 November 2011
Some good news... For a change
There had been questions about whether or not the government would actually increase benefits in April 2012 in line with September's 5.2% inflation.
Fortunately in today's Autumn Statement Osborne announced that working age benefits will be going up by 5.2% after all. This will include the disability component of Tax Credits, but not other Tax Credits.
The other bit of good news is that The Times is reporting today that the government is set to abandon it's plan to confiscate the mobility component of DLA from those resident in care homes. This must be a huge relief to residents who had been facing the prospect of effectively being sentenced to a life of never going out again. Though Sue Marsh speculates that the idea was only ever a tactic to make the government appear sympathetic by giving one concession.
Fortunately in today's Autumn Statement Osborne announced that working age benefits will be going up by 5.2% after all. This will include the disability component of Tax Credits, but not other Tax Credits.
The other bit of good news is that The Times is reporting today that the government is set to abandon it's plan to confiscate the mobility component of DLA from those resident in care homes. This must be a huge relief to residents who had been facing the prospect of effectively being sentenced to a life of never going out again. Though Sue Marsh speculates that the idea was only ever a tactic to make the government appear sympathetic by giving one concession.
Sunday, 13 November 2011
Friday, 11 November 2011
DLA: just a form filling exercise? If only it was that easy!
In the early hours of this morning, this is the appalling story with which the Daily Mail were leading. “Disabled benefit? Just fill in a form”.
They report that “Almost 200,000 people were granted a disability benefit last year without ever having a face-to-face assessment. A staggering 94 per cent of new claimants for Disability Living Allowance started receiving their payments after only filling out paperwork.”
The Mail goes on to explain that – shock horror – disabled people had completed DLA forms, and many of them had also provided evidence from their doctor. Yet because they had not had a physical assessment, there is apparently something wrong with this process. Another reason to erode disabled people and suggest that we are a drain on society. You can feel the implication that we are living on handouts because it’s easy, rather than because it’s essential.
How dare the Mail suggest that we “just” fill out a form! That form and notes comprise 55 pages – 38 of which have to be completed by the claimant. This involves a lot of writing, and having to be able to think straight and focus over a long period of time. It can require a huge effort, particularly if you have disabilities which affect communication, or your physical ability to write or type. Also, as the form focuses on activities which you can no longer manage, or need help to achieve, it is a depressing process – making you realise how disabled you really are. It can be soul destroying.
Perhaps the Mail ought to look at that form in more detail. That tiresome, frustrating, difficult form! Big, isn't it? Detailed, isn't it? Daunting, isn't it?
As well as the form itself, there is the need for supporting evidence. It helps if you include letters from specialist doctors, and for my own application I also provided a diary of a week in my life, and statements from people who knew and lived with me, describing the help they have to give. I know my GP was also approached by the Department of Work and Pensions to confirm the information I provided. I had to not only explain the sort of help I needed, but provide independent evidence.
Fellow claimant Mary told me: “I have usually had to go for an interview but once got a 2 year award on "just" the DLA form. That form included sections to be filled out by all sorts of people involved in my care and treatment - GP, specialist consultant, main carer and so on - plus the instructions on the form required me to submit with it a copy of my (then) current repeat prescription and formal social services care plan. Perhaps that can be described as "just a form" but it’s hardly as if I got my DLA based purely on my own testimony.”
The form and supporting information provided will be detailed, and sometimes the decision makers will have a straightforward task – for example if someone is both deaf and blind. Often the information provided will be enough for the Department of Work and Pensions to make an award straight away. So yes, many people do get awarded DLA on the basis of “just” paperwork. But if somebody has significant impairments, sufficient to tick the boxes for the decision makers, and this is documented by their GP or other medical professionals, surely it would be a waste of time and money to haul them in for interview?
Form filling is exhausting, depressing, frustrating, and repetitive, but we force ourselves to jump through these hoops because we need the support. The money to cover taxi fares for someone who is unable to carry their shopping home on the bus. The money to pay for incontinence pads and other medical supplies. The money to buy a few hours’ time from a cleaner or assistant. We are certainly not doing it for an easy life!
And then there are the cases where people don’t get the award they are entitled to based solely on the paper application, and have to attend in person for a tribunal. In fact, most of the people of whom I know have applied for DLA actually had to appeal before they received the award they deserved. Take Robin - he has regular reviews of his DLA, and after having been found eligible for support twice based on the same information, he was then turned down in June this year. He is waiting to go to tribunal in December, and told me: “The DLA decision maker considered my regular loss of speech production or speech comprehension, and my struggle to safely cross roads because I can't accurately judge distance or speed both non-issues. Well to me they are significant issues, and I regularly have significant difficulties because of communication problems, and I've nearly been run over more times than I can count.” Without the money provided by DLA, he is struggling to cover the additional costs caused by disability.
If you need more evidence of why DLA is so critical to the lives of disabled people, just read “the real difference made by DLA” or head over to twitter and see entries with the hashtag #myDLA to learn why this benefit is life changing.
Surely these stories make the point that, where possible, making a decision on a DLA award based “just” on paperwork is a perfectly reasonable thing to do. And where more evidence is needed, or the claimant appeals the decision, a face-to-face interview will be held.
Well, Daily Mail? What’s so unreasonable about that?
It is hard enough to get a DLA award as it is. Please, don't say we've got it easy.
They report that “Almost 200,000 people were granted a disability benefit last year without ever having a face-to-face assessment. A staggering 94 per cent of new claimants for Disability Living Allowance started receiving their payments after only filling out paperwork.”
The Mail goes on to explain that – shock horror – disabled people had completed DLA forms, and many of them had also provided evidence from their doctor. Yet because they had not had a physical assessment, there is apparently something wrong with this process. Another reason to erode disabled people and suggest that we are a drain on society. You can feel the implication that we are living on handouts because it’s easy, rather than because it’s essential.
How dare the Mail suggest that we “just” fill out a form! That form and notes comprise 55 pages – 38 of which have to be completed by the claimant. This involves a lot of writing, and having to be able to think straight and focus over a long period of time. It can require a huge effort, particularly if you have disabilities which affect communication, or your physical ability to write or type. Also, as the form focuses on activities which you can no longer manage, or need help to achieve, it is a depressing process – making you realise how disabled you really are. It can be soul destroying.
Perhaps the Mail ought to look at that form in more detail. That tiresome, frustrating, difficult form! Big, isn't it? Detailed, isn't it? Daunting, isn't it?
As well as the form itself, there is the need for supporting evidence. It helps if you include letters from specialist doctors, and for my own application I also provided a diary of a week in my life, and statements from people who knew and lived with me, describing the help they have to give. I know my GP was also approached by the Department of Work and Pensions to confirm the information I provided. I had to not only explain the sort of help I needed, but provide independent evidence.
Fellow claimant Mary told me: “I have usually had to go for an interview but once got a 2 year award on "just" the DLA form. That form included sections to be filled out by all sorts of people involved in my care and treatment - GP, specialist consultant, main carer and so on - plus the instructions on the form required me to submit with it a copy of my (then) current repeat prescription and formal social services care plan. Perhaps that can be described as "just a form" but it’s hardly as if I got my DLA based purely on my own testimony.”
The form and supporting information provided will be detailed, and sometimes the decision makers will have a straightforward task – for example if someone is both deaf and blind. Often the information provided will be enough for the Department of Work and Pensions to make an award straight away. So yes, many people do get awarded DLA on the basis of “just” paperwork. But if somebody has significant impairments, sufficient to tick the boxes for the decision makers, and this is documented by their GP or other medical professionals, surely it would be a waste of time and money to haul them in for interview?
Form filling is exhausting, depressing, frustrating, and repetitive, but we force ourselves to jump through these hoops because we need the support. The money to cover taxi fares for someone who is unable to carry their shopping home on the bus. The money to pay for incontinence pads and other medical supplies. The money to buy a few hours’ time from a cleaner or assistant. We are certainly not doing it for an easy life!
And then there are the cases where people don’t get the award they are entitled to based solely on the paper application, and have to attend in person for a tribunal. In fact, most of the people of whom I know have applied for DLA actually had to appeal before they received the award they deserved. Take Robin - he has regular reviews of his DLA, and after having been found eligible for support twice based on the same information, he was then turned down in June this year. He is waiting to go to tribunal in December, and told me: “The DLA decision maker considered my regular loss of speech production or speech comprehension, and my struggle to safely cross roads because I can't accurately judge distance or speed both non-issues. Well to me they are significant issues, and I regularly have significant difficulties because of communication problems, and I've nearly been run over more times than I can count.” Without the money provided by DLA, he is struggling to cover the additional costs caused by disability.
If you need more evidence of why DLA is so critical to the lives of disabled people, just read “the real difference made by DLA” or head over to twitter and see entries with the hashtag #myDLA to learn why this benefit is life changing.
Surely these stories make the point that, where possible, making a decision on a DLA award based “just” on paperwork is a perfectly reasonable thing to do. And where more evidence is needed, or the claimant appeals the decision, a face-to-face interview will be held.
Well, Daily Mail? What’s so unreasonable about that?
It is hard enough to get a DLA award as it is. Please, don't say we've got it easy.
Call for #myDLA podcast submissions
Today there are a couple of DLA hate stories in the right wing press. Tweeters have started using the hashtag #myDLA to share in a sentence or two how important their DLA is an how they use it.
I think it would be awesome of we could do an audio version of this; especially as - of course - not everyone uses Twitter but might want to tell their story.
How to submit:
Record your submission as an audio file. You can use your laptop's built in mic, the "voice notes" function on your iPhone, or your digital dictaphone if you have one.
Ideally we'd only want your submission to be a sentence or 2 long. The shorter they are the more we'll be able to cram in. You don't have to speak in perfect Queen's English, it doesn't matter if you say "erm". You can mention your name or you can be anonymous; it's totally your call.
You can talk about your trials claiming DLA to counter stories about people filling in a form. You can talk about what you spend it on. Anything that conveys how important it is to you.
Once you've recorded your brief submission then Email it to wheresthebenefit *at* gmail *dot* com. I'll try and put it together ASAP.
I can't promise that all submissions will be included; it will depend on how many I get. I'll reiterate the point from above: The shorter the submissions are the more I'll be able to squeeze in.
Thanks all for your contributions. The end result can be found here.
Tuesday, 23 August 2011
"Swimmer admits benefit fraud charge"
"Luckily I broke a rib so I won't be going swimming for a couple of weeks," is possibly one of the stranger sentences I have ever uttered. How could hearing a rib go "snap" upon bending down resulting in me being unable to partake of an activity that's good for me possibly be considered "lucky"?
This is how:
I explored a lot of the issues in this post a few months ago, but in short: Swimming is good for me, it's good for keeping my skeleton as strong as possible and helps prevent things like ribs going snap when I bend down. And news stories like this make getting that vital exercise a terrifying prospect because they fuel vigilantism and make it likely that I'll get reported to the DWP accused of "faking" because I can swim a bit.*
I concluded that post in April with the paragraph:
When actually what happened was something far more bizarre than that, something that I couldn't possibly have imagined: Atos will be designing and building the Paralympic website, as well as providing technology support during the games. As @SaliWho put it "satire is cancelled."
* = Emphasis retrospectively added as I'm gathering from the comments I wasn't sufficiently clear as to the main problem with this case. It's not about whether or not she was actually guilty, it's about the media convincing the general public that ill/disabled people who can swim must be faking. Apologies for my initial lack of clarity; I was a bit of a zombie yesterday after the aforementioned broken rib prevented me from finding a comfortable sleep position the night before so I was trying to function on only a couple of hours sleep.
This is how:
A benefits cheat who fraudulently claimed £25,000 in disability payments was caught out after being spotted going swimming on holiday.
I explored a lot of the issues in this post a few months ago, but in short: Swimming is good for me, it's good for keeping my skeleton as strong as possible and helps prevent things like ribs going snap when I bend down. And news stories like this make getting that vital exercise a terrifying prospect because they fuel vigilantism and make it likely that I'll get reported to the DWP accused of "faking" because I can swim a bit.*
I concluded that post in April with the paragraph:
Next year will the DWP be reviewing the entire Paralympic team using the television footage as "evidence" that the athletes are too fit to be disabled?
When actually what happened was something far more bizarre than that, something that I couldn't possibly have imagined: Atos will be designing and building the Paralympic website, as well as providing technology support during the games. As @SaliWho put it "satire is cancelled."
* = Emphasis retrospectively added as I'm gathering from the comments I wasn't sufficiently clear as to the main problem with this case. It's not about whether or not she was actually guilty, it's about the media convincing the general public that ill/disabled people who can swim must be faking. Apologies for my initial lack of clarity; I was a bit of a zombie yesterday after the aforementioned broken rib prevented me from finding a comfortable sleep position the night before so I was trying to function on only a couple of hours sleep.
Monday, 25 July 2011
Open Letter to Iain Duncan Smith
The day you get that diagnosis is the day the blood runs cold in your veins. Everything stops. Sound is muffled in your ears, shock runs through you and you know in that moment that nothing will ever be the same again.
Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.
If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.
You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.
Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.
You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.
The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.
Most are not that lucky.
Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.
They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.
Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?
There is something worse.
Finding that there is no cure.
Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.
The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.
The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?
Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.
One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.
There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.
We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.
We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.
We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.
****************
This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why a year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.
This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.
This is why more people must qualify for long term support. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.
This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.
By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.
Please listen. Please think again.
*************
Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here http://www.theyworkforyou.com/
Thank you.
Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.
If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.
You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.
Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.
You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.
The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.
Most are not that lucky.
Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.
They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.
Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?
There is something worse.
Finding that there is no cure.
Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.
The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.
The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?
Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.
One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.
There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.
We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.
We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.
We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.
****************
This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why a year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.
This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.
This is why more people must qualify for long term support. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.
This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.
By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.
Please listen. Please think again.
*************
Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here http://www.theyworkforyou.com/
Thank you.
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