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:

Suicide is a subject that, sadly, comes up on WtB a lot. We've talked about several cases of people who've killed themselves after losing their benefits; from Paul Reekie who was the first case we heard about, up to the most recent case we know of: the Mullins'. A few weeks ago Patrick Butler collated a list of all the benefit-related suicides known thus far.

We've had posts discussing the risks and we've seen other posts around the internet in which people talk about the impact of welfare reform on them. We get so many comments from people talking about their plans to kill themselves if/when they lose their benefits that we've had to put contact details for the Samaritans on the sidebar of our page.

I don't often talk about my mental health because people just don't want to hear it. I know first hand all about how people just avoid you when you talk about how much you're hurting.

I've had depression on and off my whole life. More specifically I have reactive depression: When the going gets tough; my ability to feel anything other than darkness and emptiness gets going. Sure I've thought about suicide, I thought about it a lot in my mid-teens when my life was a fucking mess. But it was never more than an abstract thought because I was always so convinced that life would get better. Though death crossed my mind a lot I was quite certain that life had to get better than it was and I wanted to still be around to enjoy the good things I believed would come.

Before I got prescribed a small amount of morphine for the really bad pain days I would every few months have a day where I was in so much pain that thoughts of suicide would rush my brain. I couldn't help but think that if I killed myself the pain would stop. But I knew that it was just that day and in a couple of days time things would be fine again. And now I do have access to painkillers that actually work which is why I've only had pain-induced thoughts of death a couple of times in the last 2.5 years. Like I said, there's the thought of it getting better to keep me going.

In my many bouts of depression since my mid-teens the same thought has always stayed with me: That it would get better eventually. It had to. But since May, thanks to the Welfare Reform Bill, I've not been seeing the light at the end of the tunnel. For 6 months I've been feeling something I've never felt chasing my heels before: A deadline after which things will never get better.

I'd obviously been campaigning against welfare reform for a year when May's news came out. I've always had a compulsion to try and make the world a better place; I couldn't sit back and let the government shit all over disabled people. But I believed in my head that I would be OK in the end. Typically it's people with invisible conditions that get hit hardest by things like benefit assessments and my impairment is very visible; all I have to do is roll up my sleeves and trouser legs to show off my deformed limbs. I was prepared to have to fight to save my benefits; I was expecting that I might have to appeal ESA decisions before things got right but I believed eventually it would turn out OK. Yes, it would be a stressful path but I expected I'd reach the end of the path eventually. I was mainly campaigning to protect other people because I was so convinced I was safe.

On May the 18th - I remember the date because it was the day after my birthday so I was already having a really fucking lousy week - I read the draft proposals for PIP; the replacement for DLA. Those proposals contain something I never saw coming: From the end of 2013 I will no longer be eligible for the benefit. At all. Like I said, I was perhaps expecting a fight during the reassessment process but the idea that the goal posts would be moved quite so far had never occurred to me. I was mentally plunged into a big black hole and I've been here ever since.

Quite simply without my DLA I will not have a car so I will not be able to go shopping. Without the benefit I will not be able to afford online deliveries as an alternative to shopping myself. I will not be able to bring my medication home from the pharmacy. With not being able to get food or medication I can't see how I can possibly last long.

Because of my physical health problems my quality of life is already low. Since I had to quit work due to illness I've been unable to afford a proper social life: I don't go see comedy or live bands any more. Benefit claimants are not rolling in cash like the Daily Mail would have you believe. When you constantly have to cancel social engagements because you're so frequently ill your friends drift away from you very quickly. My only social interaction these days is online: Facebook and Twitter are more valuable to me than most non-disabled people can comprehend; it's the only chance I get to engage with others. With even less money I will have to sacrifice my broadband connection and with it my entire social life will be lost. I will be completely isolated from everyone.

My whole life I've been a film/TV geek. As a child I spent a lot of time in bed with broken bones. I would watch videos and I basically became a human Carry On film encyclopaedia. Shit book though it was I identified so much with that aspect of Willow's character in Jodi Picoult's Handle with Care, the retaining and constantly spewing out knowledge because while other kids are out being active you just read and watch. In recent years TV has become my only solace from how awful life is. My measure of a good TV show is if it can make you forget for an hour how shit your life is. I immerse myself in the fantasy worlds of the LVPD crime lab, the NYPD 12th Precinct, the Caltech physics department and the Tardis. If I go a few days without that bit of escapism I become noticeably more unhappy because I'm constantly forced to think about all the shitness in the real world. It's one of the few things that makes life bearable and I can't see what could keep me sane without being able to afford cable TV, broadband allowing me to access iPlayer, the occasional box set or even the electricity to turn my telly on. I don't have grand dreams any more, I just want a bit of escapism from the pain and sadness. The government don't even want me to have something so simple. Just the thought of having to give up my telly addict ways has made me cry harder than any of the preceding paragraphs thus far. Switching on the telly is something that most people take totally for granted; they flop in front of The X Factor or watch QI on the occasional Friday night when they happen to be home without giving it a second thought.

Like I said, my quality of life is already low. There's this cultural assumption that being ill or impaired is innately miserable. It's not. If I had enough money for a minimum standard of living my life could be OK. I could afford to go see comedy or bands. I could afford the occasional holiday. I calculated back in February that in 2010 I was living on £67 a week less than the Joseph Rowntree Foundation recommend for a minimum standard of living.

The other day I was having a conversation with a Tory who accused me of using "strong language" when I pointed out that welfare reform is forcing disabled people to commit suicide. He felt there's no forcing going on. I had to explain that one needs money to live in this world, if you deny people money they have no way of carrying on. I'm not saying it's a bad thing we need money - I'm not actually anti-capitalist (though I do think the current system needs majorly tweaking) - but it's a fact. If we can't exist without money and we have no money we either have a choice of a prolonged decline or checking out quickly.

The Welfare Reform Bill is only one Lords reading short of Royal Assent. Then that's it, all hope is lost and I have that deadline of 2013 when my life will actually become unliveable. I don't want to die; I may not have grand dreams any more but there are simple things I still want to do in life: I want to learn to sing, I want to go to Comic Con. Things I can't afford to do even now. Like I said earlier, I've got a feeling of this ominous deadline when I lose my DLA in 2013. All those times in the past when I was low and I knew it would get better seem like a distant memory. It's almost impossible for me to even visualise 2014; I look into the future and instead of seeing hope I just see darkness.

The current feeling of sadness is compounded by the fact that it doesn't need to be this way. People could have fought against the Welfare Reform Bill but they chose not to. I've always been acutely aware of how much society hates me because I'm disabled; the disablist-motivated abuse when I was in primary school made sure I had it drummed into me for life that I am a second-class citizen. I had thought things were getting better in recent years with things like the Disability Discrimination Act, but clearly I was a gullible fool.

This year has seen a cornucopia of anti-cuts activity, but most of it has been geared towards saving libraries and trees. I don't see it as a zero sum game, I've campaigned about issues other than the WRB. But apparently the mainstream left does see it that way: The anti-cuts movement chose to fight to save libraries rather than lives. There's nothing quite like that knowledge to really make you feel despised.

Earlier this year I had a brief exchange with someone about discrimination who replied "I think people do care, though it may not always feel like it." In other words, I'm paranoid and imagining it that no-one's fighting for me. There are some very effective campaign organisations out there like 38 Degrees and UK Uncut, but we haven't been able to convince them to get on board. I had a (surprisingly late, I guess I really am a closet optimist) realisation this week of the utter futility of trying to fight the bill when we can't even convince campaign groups to campaign.

I presume this post won't get read much; monitoring the hits that come to WtB I've observed that posts going up on a Saturday night get little, if any, traffic. In the unlikely event that it does I'm sure I'm going to get rightwingers accusing me of behaving like a petulant child; I've seen it before. I've seen other people talk about how we need money to live so without it we can't go on, and the response is an accusation of emotional blackmail: People accuse the author saying "give me what I want or I'll kill myself." People who don't seem to grasp the concept of how in our society one needs money for food. It's not emotional blackmail; it's the basic stuff kids learn in primary school about how one needs £1 to buy a loaf of bread.

For those of you that know me in real life; please don't worry. In a minute I'm going to sit and watch Supernatural and transport myself into an escapist world of vampires and demons. I may be feeling low but I'm not feeling immediately suicidal. Just because I can't see past the end of 2013 doesn't mean I'm planning on checking out any time soon. I do still want to realise as many of those little bucket list dreams as possible. I'm not planning on harming myself in any way, shape or form right now. I can promise with almost absolute certainty that I'll be OK until my DLA goes away.

I'm not in need of the Samaritans or anything like that, though this current low has got me pondering one question: We advertise for people to call The Samaritans for a listening ear, we encourage people to call welfare advice lines to make sure they're getting all they're entitled to. But where do we point people when they simply do not have the cash to go on and they're not entitled to any more money because that entitlement has been removed? It's a serious question we need to find an answer to quite quickly if our society doesn't want to see that list of suicides increase exponentially.

People with depression often talk about a black dog. Ordinarily I find the idea of a night that just won't end to be a more appropriate metaphor for depression but at this particular moment I think the dog is more apt. It's like I have inside my head a little black toy dog - the kind of pet Paris Hilton would carry in her handbag - haunting my thoughts. The real threat isn't that teeny black dog, it's too small to be properly harmful, it's just a bit yappy and annoying. However with the Welfare Reform Bill the government have unleashed a huge black wolf that's threatening to destroy me in 2 years time when DLA ends. It's so big it's completely obscuring the light at the end of the tunnel. The government still have the power to kill the wolf, but with people not demanding they do so it's unlikely the govt will.

Edit 3am Monday: Thank you so much for all the kindness everyone has shown to me today. I think I've spent as much of today crying out of sentimentality as I did yesterday out of sadness.

But I beg of you, please don't just read, be horrified and pass on. Please do something. Please pile on the pressure to campaigners like UK Uncut and 38 Degrees. Please, please, please just do something. The country "did" when it came to the forestry sell-off and got it stopped. Like I said earlier; it's so crushing to know that activists could've put a stop to this but they just couldn't be bothered to do anything because we're not as trendy as trees.

It occurs to me as someone with a bit of a background in the voluntary sector that if an organisation receives a restricted donation earmarked for a specific cause they have to either spend it as the donor requests, or return the money. With bodies like 38 Degrees funding their campaigns through asking for member donations, I don't see why one can't send them a restricted donation earmarked to only be spent on fighting the welfare reform bill. Not as underhand and manipulative as it might sound; charities get restricted funding every day, and returning unspent restricted donations is not uncommon either.

If you are, or you know people who are, in the UK Uncut inner circle then please beg them to do something. Occupations ditto. OccupyLSX were asked to support Hardest Hit rally in London in October. They didn't. Please, please try to change this.

The other practical thing you can do is sign Pat's Petition to try and get the bill paused for "reflection" in order to buy us a bit more time to campaign. This post has had more than 1,000 hits on Sunday but the petition has only gotten a couple more signatures. It needs 100,000 to get a debate in the commons. At this rate not only will the bill be passed by the time it's got 100,000 names, but DLA will be on its last legs too.

A final thing you can do is write to your MP. If they're a Tory (probably the case for Lib Dems as well) you'll just get back a letter full of lies about how they're protecting the "most vulnerable". Removing DLA mobility from manual wheelchair users and handily leaving out any kind of criteria for people who need supervision for safety is not protecting vulnerable people. But it might work if you've got an oppositional MP just because it gives them something to oppose (though Ed Miliband has expressed his support for cutting DLA).

Really, proper final thing you can do: Write to a Lord. Pick a Lord, pick any Lord. Pick several. Write to them, beg them to see what they're doing. The Lords is where the bill is right now and there's only one reading left. There's a list of Lords and their contacts here:

Once again, thanks for you kindness. I'm feeling a lot less worthless than yesterday.


  1. I'll retweet this tomorrow and then again on Monday morning and I suggest anyone else reading it does the same - Monday morning is time for sharing.

    The PIP stuff makes me feel so helpless. With ESA, I feel there's something tangible to be argued about; can people work or not? But what PIP is for is murky, it's certainly not "for the extra cost of being disabled", which what DLA is for.

    Well done for writing this.

  2. All I can say is that I completely empathise with you as I am in a very similar situation. Society, even the more militant elements, do not see disability as a worthy or fashionable cause. What are the authorities going to do when they remove our means to live- put us in extermination camps?! Yes, very hyperbolic, but it makes you wonder. Take care and enjoy Supernatural, it's brilliant escapism. Mark

  3. I am minorly disabled and I have a full time job. I've never been on benefits.

    I am going to retweet this along with the goldfish, and I stand behind you every step of the way. If the Conservative Arse thought you were using strong language maybe you should have gone one stronger and told him he was a murderer. These aren't suicides, they are murders, perpetrated by the state, it's just they convinced the victims to take their own lives instead of doing it themselves.

    Retweet. Boost the signal. Put together petitions. if it only takes 100,000 signiatures, we can do that.

  4. There's this petition to get the bill paused: but in almost a month it's only had 6,000 signatures because people just don't care. And it's not even a petition to halt the bill, just pause it for reflection.

  5. Whenever the likes of 38 degrees came back to me, flushed with victory over some campaign, and after asking me for a financial donation would breathlessly ask "What shall we campaign for next?" they'd offer lists like "The NHS," "Murdoch," the usual stuff.

    Each and every single time, my response has been "Benefits are being unfairly cut! Protect benefits for the deserving and stop demonising the disabled!"

    I feel alarm that people seem to interpret my responses as "Demonise the disabled even more and deny everybody benefits! Bring back the workhouses and put the poor there!"

    I won't feel content to live in this country any more until it begins to see sense on the evil society is committing on its worst-off elements, encouraged and fuelled by the most poisonous and hateful press and media I have ever seen in my life. Even if, by some miracle, I found work first thing tomorrow morning, I won't stop arguing for a more positive benefit reform that would bring society into the 21st century, not drag us back to the 19th.

  6. True and totally real. And also (((Lisa))) if ok, however futile they may be.

    I am at the point where I say to campaign organisations: if you're not with us you're actively against us. On the subject of supernatural type shows, if anyone here saw the episode of Misfits a couple of weeks ago, the one with the Nazis, remember the old man at the beginning, saying that everyone he knew had been murdered and that he had done nothing. In fact, even if someone hates Misfits, I'd still suggest they go and find that episode and watch his monologue, it's powerful stuff. I am as cautious as anyone when it comes to Nazi analogies, so I'm not making one here; my point is simply that there are a hell of a lot of people doing nothing while others die. May it haunt them, fuckers.

  7. I've reposted, and challenged my friends to support us.

  8. Thank you so much for your very powerful blog.I have suffered from depression for most of my adult life and can empathise with you if I wasn't trying to type through tears. (((hugs))) and have fun with your Vampires.

  9. Big government ambitions (like the NHS computer systems project which failed abysmally and has been abandoned after billions of your and my money was distributed to private companies) tend to remain ambitions. PIP is a very, very big ambition and in my view it's highly likely that after the distribution of billions of your and my money it will remain just that, an ambition. Cynics might suggest that distributing taxpayer money to private companies was the aim in the first place, and the stated ambitions just a cover for this. That's always something to bear in mind :-)

  10. The anti-cuts campaigning hasn't been just about, or mostly about, saving libraries. And many of the library campaigners - who form a broad, "not always together", coalition, campaign for other anti-cuts causes.

    The main reason (of many) that library campaigners campaign is to save a knowledge service - that is supposed to be protected by a 1964 law - that is the only "thing" of its type for people on low incomes, and/or who have other critical information needs. Here's one:

    The privacy of the library patron, and mental illness.

  11. I'm on your side, and I think it is terrible how politicians and the media have acted in relation to disabled and ill people.

    I'm able-bodied but a student and I understand the importance of DLA only because I have studied social policy.

    I don't think campaigning organisations, the media or politicians have any excuse for not taking up the fight but I don't think the public generally understand the significance. Despite studying social policy I still don't understand fully what the change will mean in practice. Understanding all the details of the benefits system is complicated for someone who hasn't been in need of them. But I understand the worry in light of other introductions of conditionality which have made eligibility for benefits tighter and tighter.

    I don't know what to add but I just wanted to say that I think many able-bodied would support you if only your voices could be heard and understood. Bullying has always been there, I was bullied myself. Please don't lose faith in human nature completely.

    I think that there just has to be lots of decent able-bodied people who made aware of the issues would feel strongly that what is happening is wrong.

  12. Thank you for this post. I do not think I have anything very useful to say, but if you like Castle, you might also like Rizzoli and Isles, Without A Trace, Burn Notice and Bones, if you have not seen any of those.

  13. To Lisa - thanks for mentioning Pat's Petition.

    6000 votes in under a month is a fantastic achievement. Disabled people and their carers do not have a constituency to call on (like the GPs and the BMA who have got the petition about the NHS bill). Disabled people often don't have access to an email address - many can't afford the adaptions to be able to use a computer in the first place. So this first 6000 votes is an incredible success story.

    But you rightly point out there's a long way to go, and that it doesn't ask for much - just an opportunity to reflect and reconsider.

    So thank you for mentioning it and please do encourage everyone, your friends, colleagues, family, to support it to reach the 100000 votes.

    Alex - you mentioned 38Degrees - have you read their blogpost by David Gillon asing them to look at how their voting system makes it difficult for marginalised communities to get heard? Link is

  14. Hi,

    Your blog has reached me in Australia, thanks to Twitter. I have both a physical disability (Ehlers Danlos Syndrome), and a mental illness (PTSD). Australia has just cut rebates for psychologists, and has just put through legislation to make it more difficult to retain the Disability Support Pension. What is surprising is that it is Labour that has done this - the liberal side of politics here. Heaven knows what we'll be up against if the other side gets in.

    Last week, I did try to kill myself - twice. It IS getting harder and harder to keep our heads above water, and the subliminal message is "you're not worth it - you are shit". You are not imagining it - the discrimination is there and it is real and in most cases, people don't even know it. In Australia, when cows going to Indonesia were found to be abused, there was public outcry to the point that parliament had to stop and regroup. But take away people's health care and only hope of monetary support and no one bats an eyelid. There are children in this country that have to wait over a year for a wheelchair ffs, but no, let's think of the cows, and only the cows.

    When I have spoken up, I get abused - as you said - for having my hand out. Never mind that I can't afford what most would consider basic essentials, like health care, or fresh food. My son has Aspergers and I've had to stop all his therapy.

    People joke about "first world problems" - the way we are going back in time in how we treat people with a disability in first world countries IS a problem.

    I do hope that by some miracle, you get to keep your benefits.

    And if people think that you are talking in "strong language" feel free to point them to my blog for comparison ;-)


  15. Billy McLean ( December 2011 at 15:14

    You AREN'T alone, there's many of us in the same position. PLEASE don't give us hope xxx

  16. Lisa, this is terrible. The thing we want to STOP is the undeserving people not the truly deserving ones like you and my mum (albeit hers is self-inflicted). I've tweeted and asked for RTs. I've suffered with depression myself so know how crushing it can be and the stigma that goes with it. :hugs: to you.


  17. But Carrie there are very few undeserving ones. Look up the official statistics (not manipulated numbers in the Daily Mail): The fraud rate for DLA is 0.5%. Out of every 200 DLA claimants, 199 of them are genuine.

    The government started the WRB with the goal of cutting 20% from the DLA budget. With only 0.5% being fakers that means they deliberately set out to ruin the lives of one in every 5 people. People like me. People like your mum. 20% of all the 3.2 million claimants.


    Lisa, I don't know how far reaching this is... but my RT has now reached America... I hope it helps. Don't for one minute think that there is an absence of people behind you on this. Thank you for sharing - "... there by the grace of G-d goes I..." I wish the politicians could be reminded that they are only mortal themselves too.

  19. "These aren't suicides, they are murders, perpetrated by the state, it's just they convinced the victims to take their own lives instead of doing it themselves."

    So very true. On Monday (tomorrow) I may or may not get a reprieve for my own situation, but either way it seems more likely that I will be dead soon. The amount of stress and duration I've experienced has exceeded my ability to cope, and certain incredibly stressful events reoccur with painful frequency. There is not enough time to recover from one before something else happens.

    Better luck to you.

  20. Although I can but sympathise with your disability, I empathise a great deal. I also have (reactive) depression and suffer stress and anxiety, which is obviously made worse by finding myself redundant from my public sector job and unable to afford my own rent, and just by the fact of being on benefits at all. It's a vicious cycle.

    I really feel for you, and am posting this on all social networks I am a member of (all the big hitters). I hope this will help spread the message.

    May I ask why you will no longer qualify for DLA, so I might better understand your predicament?

    Best wishes

    Nicole x

  21. @Nicole:

    Here's the piece I wrote in May which explains the criteria changes and how I will become ineligible:

  22. There is one detail that I do feel is dragging down finances, and increasing the pile of things to fret about (and clearly gives you concern), because it is considered 'as read' that a car is essential for mobility. Car ownership brings stress , cost and other depressing issues. I've not owned a car full time since 1976 and when I inherited a car for a short period, the sheer relief in getting rid of it was immense.

    It is part of a greater issue of feeling forced to conform to standards that you feel uncomfortable with, along with a realisation that there is generally a way to deliver a result but not always one promoted as 'obvious'. Don't get hung up on those cheating the system - they'll get found out eventually,

    Without a car the independence gained and actual contact with the local community brings so many different opportunities, to gain a benefit of some kind. You discover so much that can be done locally or with the links you make with local shops who can treat you as a real person and not a 'customer' Join the regulars on local buses (a great social opportunity) or share taxis to save the cost of the whole trip coming to you.

    Forget you money when you've gone to the shop? - pay next time you call (try that at a supermarket!) Can't get out to collect your prescription this week - It 'll get dropped off for you through local connections. You'll often find that a local shop will match the cost of going to a large store in saving the hassle of travelling and having small packs of just the amount you need rather than forcing you to buy their pre-packs. etc. Don't accept the presumed behaviour has to be followed, and get that pressure out of your life.

    Check out Caroline who has cut her mobility costs by ditching her mobility scooter and riding a tricycle. the cycle is more stable, means that she gets mild exercise (and the feel-good factors that exercise can deliver), does not need to call up for drivers and vehicles to get to many local places. the cost and effort of making a booking, or using the ever more costly fuel in a car.

  23. @DH:

    I need a car because I have a fucking mobility impairment! Ever tried carrying lots of shopping home from the supermarket balanced on your lap while you're pushing a wheelchair? I have. It doesn't work. You can either hold on to the stuff, or push. And don't bother with "oh, but you can hang stuff on the handles on the back;" One bag will fit, tops. Or would you like to see me dispersing the shopping I've just paid for all along the High Street?

    "Without a car the independence gained and actual contact with the local community brings so many different opportunities, to gain a benefit of some kind. You discover so much that can be done locally or with the links you make with local shops who can treat you as a real person and not a 'customer' Join the regulars on local buses (a great social opportunity) or share taxis to save the cost of the whole trip coming to you."

    So you're saying I should give up my car and become a charity case. So much for rights, but... Hey. I'm only disabled, why the fuck would I want rights and equality.

    And for your information I do travel by bus. When the drivers will stop at a bus stop with a wheelchair user sat at it anyway; a hell of a lot will either drive past or tell me the ramp is broken. Or perhaps you'd just really like to see me in agony when all my old fracture sites become excruciating from the cold (and I've had about 55 broken bones, I have a lot of old fracture sites) at having to sit at a bus stop in this weather for nearly an hour because no bloody drivers will stop. And that's without even mentioning my other chronic health conditions.

    "Don't accept the presumed behaviour has to be followed, and get that pressure out of your life."

    But I should accept your presumption about my behaviour and bow to your pressures of how you think I should live my life?

    Telling me to get some fucking exercise because it'll be good for me is one of the most patronising things I've ever read. I push my manual wheelchair long distances for the exercise. When I'm well enough I swim and go to the gym. Is that good enough for you? Any more presumptions you want to make about me based on Daily Mail stereotypes about what you think a typical benefit claimant is?

  24. Thanks to Cameron, IDS & their attack dogs at the Daily Fail and the rest of the media, a concerted & comprehensive campaign of demonisation and yes, de-humanisation, has been waged against the sick & disabled. The war cry is 'Scroungers' we are 'Workshy' etc. The last time a section of society suffered like this, was, no matter how hard one tries to avoid it, the Jews of Germany under the Nazis'. It IS that simple. That is why we are despised, ridiculed, treated as less than human. The rhetoric used by Cameron himself, IDS, The Mail, Sun, John Humphry's et al is a non stop dripping of poison. And the general public has bought it! Hook, Line & sinker. Why are no senior politicians standing up for us? More to the point: Where is Her Majesty's Opposition? When 2013 comes around, I'm checking out! And for this I served my country????

  25. Good grief. DH, where do you get these ideas?

    I would like to explain that when we are disabled, and use a wheelchair, it is because we CANNOT travel between local shops. It's not a lifestyle choice to need a wheelchair. Oh, I give up.

    Lisa, this is an excellent post- and I'l be sharing it widely on Monday morning. Please don't allow people with no experience of knowledge of these issues get you down. You are doing a great service by sharing such difficult and personal feelings. Thank you.

  26. Just to add to Lisa's last post. I'm not a wheelchair user, but again my mobility is dependent upon having a car. I live on a steep hill, the only 'local' shops' are further away than I can comfortably walk and on other steep hills, in fact most of the town is on steep hills, so wherever you go, you're looking at somewhere that's not accessible to many disabled people without a car. The bus is no use, the seating is just too uncomfortable for me to tolerate, never mind the pain from standing at bus stops for god knows how long. You say share a taxi - who with? Fitness is all very well, but I can't tolerate a bicycle seat, I have problems with any kind of seating, a car allows me to minimise exposure. It may not match your preconceptions, but a car matches the needs of my disability better than anything else, and if you take it away, you'll take away a considerable amount of my access to the environment and community.

  27. It's not taking away your car that matters, it's taking away your centrally-funded DLA and leaving your local authority to pick up the pieces, even if that means paying for residential care because you're no longer capable of surviving in the community. That way, the local authority are the baddies, not national government. There's a logic to all this.

  28. Don't get me wrong, but there is an evil side to me which is snickering about all of this.

    I am on HRC and HRM. I am very afraid that I am about to lose both too. My only saving grace is that I use an electric wheelchair outdoors. Will that balance out the fact I can stagger around a bit indoors? It remains to be seen.
    At the same time the government is doing away with Severe disability Premium which I will also lose.

    However both HRC and SDP currently go directly to social services to pay for my care, for a total of around £90 a week (this for someone totally reliant on benefits).

    When/if I lose my DLA and SDP in 2013 they will be stuffed.

    I wonder if the government has thought this through. And if they haven't, well... *snicker, snicker, snicker*.

    It is very petty, but I am so angry that it is the only thing left to be.

  29. This government frequently releases bogus disability benefit stats to manipulate the media into seeing claimants as fakers. This is done to make the electorate think they are tackling benefit fraud, instead of cynically removing needed financial support from some of society's most vulnerable. Although nazi comparisons may seem dramatic, such propaganda is in some respects similar to what happened in 1930's Germany. Enough to scare and depress many people. Neither Labour nor the coalition has considered targetting wealthy tax dodgers, which would generate billions more than targetting the disabled. Anyway, in a civilised society it is the government's duty to care for the most vulnerable.

  30. I have just read this very emotional post. I am going to bed & will reflect before writing a post & letters. I will though reteeet & sign the petition in support of everyone including my Mum who receives DLA.

  31. I'm another who has depression on top of disability.

    I can't see any future either. I have studied Cognitive Behavioural Therapy as it is thought to be an excellent treatment for depression. But the reason it works is that it asks you to confront any dark thoughts you're having, to challenge them and by doing that to see that there is a positive way to move forward.

    But I am dependent on state money and once it goes I can no longer exist as I have no other means of support. Cognitive Behavioural Therapy cannot change the facts of the matter.

    So all I can do now is turn to mindfulness which teaches to live in the moment and not fixate on the future. In other words, try to feel happy while things are OK and just deal with the problems when they're in the here and now. I have some success with that.

    Nevertheless, once I lose my benefits I shall resign myself to oblivion. It's hard enough to find reasons to carry on with the burden of my illnesses anyway. Most days I spend in terrible discomfort. Coping with that and having no money... there's just no point.

    For anyone that does commit suicide as a result of a benefits issue I would just ask that they make it very clear in their notes or final communications that it was welfare reform that made them do it. Maybe, if the list of deaths gets long enough, the next generation will find things have changed for the better.

  32. Excellent article. I could have written very much the same, except I did actually attempt suicide. Anyway. Regarding your medication, my supermarket do a service for repeat prescriptions where you ring then, they take the repeat slip to your gp, collect the script and deliver the meds to your door. Try it, it takes a few days but it works. I'm talking about the supermarket beginning with T.

  33. I am very concerned the person I care for will sink back into a severe depression as a result of his latest ruling. In a nutshell he has multiple problems, requires full-time care, does not fend for himself, manage his own affairs and rarely leaves the house (even to go into the garden). He is on high rate DLA and all correspondence is addressed to me. Despite all this and with NO Atos "assessment", he has been placed in the work related activity group. As he has complex problems, he will not be attending the interviews, therefore will lose all his money. Yeah, right, Cameron, we ARE all in this together.

  34. I thought the DLA was hard enough to get as it is, I have a severe mental health disorder, but with the help of my family and (a sometimes at least) understanding employer I work fulltime.

    My Community Mental Health team pushed for me to apply for the DLA to help with some of the additional costs of my disability (such as therapy as I could not attend NHS sessions as they're during my work hours...), I was rejected, appealed, was rejected several times again. Eventually at an appeal tribunal a year and a half after I was first rejected I was awarded the medium care component rate.

    It seems ridiculous that they're planning to make such sweeping reforms without thorough research to the effect it will have on all recipients and I frankly am shocked that campaign groups haven't gotten involved. Will be sending a barrage of emails to 38 degrees later...


  35. I just want to say that I support everything that you say. It is stupid of the government to expect people to get better ecause thay have been ill for 1 year exactly, or that they are going to get 100% better because they have failed the PIP test. There are going to be many because they changed the criteria that you have to fulfill.

  36. Well if you can write 3,000 words of self-pitying and factually incorrect waffle, you can easily handle most of what passes for jobs in the current economy. May I suggest for a start you read the second draft of the PIP proposals and not the first? Shock horror but the government actually listened and altered the thresholds and point levels for PIP in response to research. P.S. the best route out of depression is probably to fight it, not to dwell on it.

  37. Thanks for this post, I'm busy copy/pasting it to loads of people. You're on Metafilter now so there should be a big increase in visibility. One thing I would like to comment on is the whole "save the libraries/trees" things. I don't think the left feel that the lives of the disabled are worth less than libraries or trees. What I think is they (like all of us) are blinded by the presumption that the disabled will be taken care of in a civil society. These reforms are a hidden issue and the true horror of these reforms need to be talked about so that the UK doesn't end up with a Kimberly Rogers style situation.

    Take care and good luck!

  38. @Anon 7 December 2011 00:19:

    Thanks for the LOL, I've been needing that. Nothing quite like the irony of someone falsely alleging I'm factually inaccurate while conflating DLA with out-of-work benefits in the same sentence. Daily Mail reader I presume?

  39. I'm a librarian with severe depression and I completely agree that people are far more important than libraries. It makes me sad that libraries get so much more attention and campaigning.

    This is a brilliant, although very sad post.

  40. @Anon 7 December 2011 00:19

    "Well if you can write 3,000 words of self-pitying and factually incorrect waffle...point levels for PIP in response to research"


    "P.S. the best route out of depression is probably to fight it, not to dwell on it."

    I hope you get it. I really do. That would be pretty funny. I don't even have it, and yet I know how it works. You are clearly too lazy to bother to find out. And yet you can find the energy to abuse strangers on the net. Interesting.

  41. Dear Lisa, I was so upset when I read your words and what is happening to you and many others like us is truly terrible. I can do all you ask but I want to do something for you as well. Firstly, please don't hurt yourself. We can never know what the future will bring and when I nearly died 22 years ago I had no idea at the time that I would go on to have two beautiful children, a useful career and end up writing stuff. I'm a manic depressive so I'm not able to promise to live but it gets easier to try the more you do it, somehow. You said you enjoy fantasy and stuff like that so I think you might enjoy reading the book I wrote and I would like to send you a copy for free. There's a lot of optimism in it. Not sure how to do this but I think if you go to my website and ignore all the pay buttons, just go to the message page and tell me where to send it from there, I can get one to you, my treat, because you are so special and so need to be here with the rest of us. LJ Lawry xxx

  42. I've come to your blog via a post on Facebook from Ukuncut,which inspired me to email peers in the House of Lords. Your piece is very moving,shocking and revelatory. I know a bit about disability as my late wife had MS and by the end of her life she had become totally disabled by a cruel disease. I pledge to do what I can to help fight these so- called benefit reforms. In the meantime I am filled with admiration for your courage and indomitable spirit.

  43. I tried just now to comment on your post but it seems to have disappeared. So I will try again. I found your blog very moving. I'm trying to spread the word. I came here via a Facebook post from Ukuncut, which has inspired some emails to the House Of Lords. I'll continue to do what I can to add my voice to the protest. Your courage and strength of spirit is greatly to be admired.

  44. The 38 Degrees petition to stop disability benefits is now up and running, please visit the site for more info. Mind you, that didn't happen until we started hounding them with complaints and voting for the campaign in droves! In one day we drove up the votes by almost 3,000!

    I love this post. It kind of describes me, as I've suffered with both Reactive and Endogenic depression for 30 years and I, too, will not be eligible for the new PIP, despite numerous suicide attempts since age 11 and various hospitalisations, agoraphobia, anxiety and panic attacks. The most I'll score on the assessment is 4 points. I, too, am addicted to TV and internet, as they are the only day to day interactions I get. Without Facebook I would be alone, depressed and possibly suicidal. Unlike you, I think about suicide and have tried to commit it over the years, especially when faced with those neverending nights that you describe. In the past I would cry all night, praying not to wake up the next morning. Nobody ever understood what I was going through, except my other mentally ill friends, basically the only people I hang out with these days. I could never have a friendship with a so-called 'normal person, because they just don't get it. We get it, though, and we support you.

    Please can I ask everybody who has commented here to go to , so you can take part in the new PIP consultation that closes on April 15th. Please, everybody, make your voice heard even louder than it already is.

    We also have a great page on Facebook and we'd like more people to join; it's called Spartacus Report, and the URL is

    So please come and join us. A lot of us are on the Twitter campaign also.

  45. Lisa, I am very touched by your story. I'm in the US and had no idea what was happening over in England. But somewhat the same is happening here, and I fear losing my Disability also. Our world is in serious trouble.

    I'll be posting your story on my web site:

    In Sisterhood,