2013-05-21T01:04:37-04:00 Lisa Egan http://www.huffingtonpost.co.uk/author/index.php?author=lisa-egan Copyright 2008, HuffingtonPost.com, Inc. HuffingtonPost Blogger Feed for Lisa Egan Good old fashioned elbow grease. tag:www.huffingtonpost.com,2012:/theblog//3.1465597 2012-05-01T19:00:00-04:00 2012-07-01T05:12:24-04:00

Lisa Egan http://www.huffingtonpost.com/lisa-egan/ _______________

I was 11 when I went to Disney World: A compulsory right-of-passage for every disabled child in the developed world. It was the first time I'd ever left the UK, so to say I was excited would be an understatement.

On our first morning there we took a cab from the hotel to the theme park. In the pickup/drop off zone, before entering the gates of Disney World itself, I saw the most incredible thing I'd ever seen in my life thus far: a wheelchair accessible bus.

I had never travelled by bus. I'd never seen such a thing as an accessible bus. It hadn't even occurred to me that they might exist. The fact that mobility impaired people could use public transport in Orlando genuinely rocked my world. Of all the delights that Disney has to offer a child; nothing made me scream "Mum! Dad! Nan! Look at that!" quite as loudly as that bus. It was just a bus; such a mundane mode of transport to the majority of people. But to me it represented such freedom and inclusion that I couldn't quite believe my eyes.

I lived in a miserable little Essex village at the time. About once a day you could get a bus to the nearest small town and I think you could occasionally get a bus to Cambridge. When I say "you could"; that obviously didn't include me. The village did have a train station, but unsurprisingly that wasn't wheelchair accessible.

I was trapped in a village where I had no friends. The local high school was (surprise surprise) not wheelchair accessible so I had to be taxied to a school near Cambridge. This meant all my friends lived about 20 miles from me. Like every 11-year-old I wanted to go shopping on Saturdays with my peers; I never could. This was why catching sight of an accessible bus meant everything to me. It held the optimism of a world that I could be a part of.

It was 10 whole years later that I travelled by bus for the first time; and that was in America too.

The summer before going to university I decided to spend a month backpacking around the US. My first port of call was Los Angeles and on my first day I caught the 156 from North Hollywood down to Santa Monica Boulevard where I changed onto the four down to the beachfront in Santa Monica. So momentous it was that I'll probably remember the numbers of those buses well into old age; long after I've become unable to recall my own name.

Now I travel by bus all the time I'd recognise that journey for what it is: Slow, boring, hot, and full of people that smell terrible. But at the time in August 2000 I felt so free and included. I think you probably need to have been excluded from bus travel for 21 years to realise how liberating it is to be able to catch one for the first time.

A month later I moved to London (well, Uxbridge, but it's within Greater London) to go to university. The U3 and U4 routes going from the Brunel campus to Uxbridge town centre were accessible, but that was it. I couldn't get the 207 to Ealing or the 607 to Shepherd's Bush. Of course, being able to travel by bus was still so new to me that I was bloomin' grateful for the couple of routes I could use.

The picture was far worse in central London. When I first moved to inside the M25 there were no accessible buses in the centre of town, the majority of routes around the West End were those nightmare Routemasters. During the day, anyway: Most companies put accessible buses on their night bus routes and it always struck me as slightly bizarre that London transport was only properly accessible between midnight and 5am; like disabled people are the new vampires.

Thanks to the Mayor at the time - Livingstone - inaccessible buses were gradually phased out over the next five years. London waved farewell to its last inaccessible buses, the Routemasters running on route 159, in December 2005. In 2012 inaccessible buses still make up the majority of bus company stock around the country. Every time I venture out of the confines of London I find myself grateful to Ken for London's 100% accessible bus network.

Sadly since he was replaced by BoJo in 2008 we've seen London's most accessible vehicles - the Bendy Buses - taken off the road. Many prefer double deckers for taking up less road space, but London's wheelchair users miss those Mercedes Citaros dearly. Even with the fact that on the early models the wheelchair ramp would jam if the driver tried retracting it while the bus was still 'kneeling'. I was once the reason for the breaking-down of three consecutive 453s outside Old Kent Road Tesco's...

I was also 21 the first time I travelled on the tube. Most non-disabled people probably think it sounds bizarre to be having all these public transport-related firsts in your twenties. Just like the buses; I also got my first taste of travelling on underground trains in Los Angeles. Unlike our tube the Red Line there is fully accessible. Even if a little scary because I'd seen Volcano and I kept expecting the train to fill with lava.

Ken may have abolished the inaccessible bus, but despite his good work the majority of tube stations remain inaccessible. Oh to live in LA. And not just for the weather.

In 2006 Livingstone's administration promised that one third of London's tube stations would be accessible by 2013. You can't begin to imagine how much this thrilled me. At the time my nearest accessible tube stations were Westminster, Waterloo or Caledonian Road. All a bus ride from where I'd set up home in Camden. So I never used the tube. The prospect of being able to use one in every three tube stations meant I could get to most places in London by getting the tube to a station or two away from my destination and pushing in my wheelchair the rest of the way. I could make it across London in almost the same time frame as someone without a mobility impairment whereas it takes two to three times as long to make a parallel journey by bus.

Livingstone didn't retain his seat in 2008 though. Johnson quietly cancelled access upgrades throwing away £20 million of taxpayer's money in the process. What you can't really put a figure on is all the disabled people who can't move freely around the city: How many people can't go for jobs because the return journey to work would be in excess of four hours by bus when it's a 1.5 hour return journey for a non-disabled person by tube? How much tourism revenue does London lose out on because there are no accessible stations in the West End? What about the emotional and social costs for people who are isolated in the suburbs?

If anyone's thinking of commenting with "but he had to cancel the upgrades! We ran out of money!" You can save your little fingers the trouble: Johnson managed to find the cash to fund his pet projects. He spent £1.4m per vehicle on the new Routemasters. A standard double decker is £190,000. It wasn't that he couldn't afford the upgrades on the tube; he just doesn't care about access.

I am completely opposed to the cuts to benefits and public services. Most people of a similar inclination to me are also opposed to the Olympics and feel it's unacceptable for the taxpayer to be spending billions on a fortnight long party when disabled people are being told that they're no longer allowed to use the toilet in the night.

I don't want anything to do with the games. I'm planning on spending a fortnight barricaded in my flat with a stockpile of food and DVD box sets. But I will never begrudge the games coming to town because the only tube access upgrades Johnson didn't cancel were the ones essential to the Olympic strategy. The games leave behind a legacy of improved access to the tube and I will forever be grateful for that.

Transport for All published this table assessing the accessible transport plans of the four leading Mayoral candidates. Great progress towards a fully inclusive transport network was made under Livingstone; we then saw regression under Johnson. If we want to start progressing again, we need Johnson out of office. He doesn't propose to meet a single one of Transport for All's targets.

This isn't just an issue for those who are currently disabled. Around one in five people have some kind of impairment. The figures are skewed by age as the majority of older people have some kind of age-related condition. If you want the tube to be fully accessible by the time your mobility begins declining then you need to vote for improved access to the tube now. Even if you're convinced that you're so healthy that you will still be running marathons when you're 101; there's a good chance that at some point in your life you'll break your ankle playing football and be on crutches for six weeks. Just bear that probability in mind if you're thinking of voting Johnson because "he's a right laugh!"

I can't stand the Labour party in its current state. They're the ones who kick-started the horrific welfare reform by introducing Employment and Support Allowance in 2008. I have no confidence in the current Labour party leadership: I wouldn't trust Ed Miliband to run a proverbial in a brewery, never mind a country. Labour have moved too far to the right for my liking, though sadly I have to concede that out of all the main parties; they are the lesser of three evils. If a general election were called tomorrow I'd vote Green without hesitation.

It saddens me that Ken rejoined Labour after serving his first term as London Mayor as an independent candidate. I would feel much happier putting my mark next to his name if he weren't affiliated with a party I have no love for.

But put my mark next to his name I shall. Like I said at the start: His transport policies changed my life. At least now my second nearest tube station is accessible, even if the closest one to my home isn't.]]> tag:www.huffingtonpost.com,2012:/theblog//3.1355970 2012-03-19T19:00:00-04:00 2012-05-19T05:12:01-04:00

Lisa Egan http://www.huffingtonpost.com/lisa-egan/
From there I went to my local pharmacy for the second time in two working days. I go in there and everyone exclaims "hi Lisa!", I'm pretty sure it's not the kind of establishment the Cheers theme song writers had in mind.

On Wednesday I had a an appointment at a specialist hospital. The clinic in question I was attending that morning is totally unique, there is only that one in the whole country.

I got all this care on the NHS. Without question I wouldn't still be kicking around were it not for the care our health service provides.

Because I depend on the NHS so much, last week I also felt the need to go to a couple of "save our NHS" thingies. Unfortunately with so many of the services I depend on being under threat, going protesting is part of a fairly normal week now too. Rather ironically I couldn't go to the 'hands around St Thomas' vigil because I was sitting in a different hospital having medical implements shoved up my nose.

I've been one of the NHS's most loyal customers most of my life. Growing up with brittle bones I spent so much of my childhood waiting for X-rays that I could spell "danger" and "radiation" from reading the signs on the door at about the same age that most of my peers were getting to grips with "cat" and "dog".

During my teens and early twenties I used the NHS much less, though still a bit more than Joe Average. From my mid-twenties onwards my life has been this thrill-o-rama of hospital appointments and increasingly long prescriptions: Some of my current health problems are related to my osteogenesis and some are not. Then there's those that are not really osteogenesis-related, but OI exacerbates them. I'm basically falling apart.

I know of people who are in favour of these reforms who've been mystified by the fact that I'm opposed to the bill but acknowledge stuff like this. It's quite simple really: I think that when you care passionately for something it's important to critically assess its failings as well as its achievements. Acknowledging that something could be better doesn't mean you want to see it dismantled.

I care passionately about my car. Because of my impaired mobility I need it for most excursions out of my flat. Acknowledging that the heating doesn't work properly and that I wish the heating worked better doesn't mean I want my car to be shoved in a crusher.

I care passionately about the NHS too. I need it to stay alive. Acknowledging that it often fails groups of people doesn't mean I want the NHS dismantled. I want to see the problems fixed, just like I wish Peugeot would fix my car's heating so it doesn't get progressively cooler the faster my car is going.

The thing is: The NHS can't fix their problems until they know that they exist, and where they exist. Just like Peugeot can't fix my car until they find where the fault actually is. Not being a petrol head I can't run diagnostics on my car to find the cause of the problem, but I can help the NHS find problems by writing a complaint when I encounter a useless doctor.

Evidence like the aforementioned stuff on elderly care, or Mencap's work on people with learning difficulties getting failed by the NHS all help the NHS to identify faults so they can be fixed. Suing over clinical errors was a way of not only getting compensation for injuries incurred, but it was yet another way of providing feedback over where faults lie. The Legal Aid Bill puts that in jeopardy.

And quite simply there's the fact that the Health and Social Care Bill does nothing to improve the care received by the demographics currently failed by the NHS. If anything you can bet that such patients will receive even worse care under a more competitive system.

Another one of the NHS's big issues is waiting lists. Last week my GP referred me to maxillofacial because I need to see someone about my right temporomandibular joint. I need to see someone about it now, not in four months time. At this precise moment my jaw is hurting so much that the pain travels right the way around to the base of my skull. Not only do these reforms fail to address the issue of waiting lists, if anything they'll make matters worse.

When Lansley and co get on the defensive about the reforms they point out that Labour started the process of outsourcing to private providers. (Which is true, but it doesn't mean they have to keep up the practice). Because it's been happening for a few years I've had a couple of experiences and know first-hand that it increases, rather than decreases, wait times.

Three years ago an orthopaedic surgeon sent me to have my knackered ankle MRI'd. I was given an appointment to have it done six weeks later. Two weeks before the appointment I got a letter telling me that my appointment had been cancelled and instead I was going to be having my MRI at a private hospital because they were using private providers to cut down their waiting lists. So did this mean that I had my MRI sooner than the two further weeks I had left to wait? Of course not. Want to know how long I did wait? 10 months. By the time my ankle was finally MRI'd it was a year since the consultant ordered it.

Once upon a time orthotists actually made orthotics. As a child I had countless splints made while I waited. Now all orthotists do is take a mould of the body part to be supported and send the mould to a private provider to make the product. The same orthopod that ordered the MRI also ordered orthoses to be made for my shoes. The ones I'm waiting for now have been sent back to the factory three times since they were first made, because the private company can't follow simple instructions. It's been about two years since I went back to the orthotist because the first pair had worn out, so can someone please explain to me how a two-year wait can possibly be justified when they could actually be made on the spot?

I'm really not sure I can face the prospect of waiting a year or two to get my jaw seen to.

Outsourcing to private providers doesn't just result in excessive delays and headaches from where you kept head-butting the wall in frustration; the consequences can be far graver.

The government want GPs to handle budgets taking that responsibility out of the hands of the primary care trusts. When my GP makes judgements about whether or not I need to see a maxillofacial consultant I want him to make that decision based on clinical need, not budgetary concerns. (Additionally there's the fact that GPs are so untrustworthy, according to the government, that they can't be allowed to make judgements on someone's fitness for work: That's the government's defence for why they 'need' to use Atos).

I'd rather my doctor spend his time doctoring, leaving the accountants at the PCTs to do the accounting. If GPs don't want to spend their time dealing with budgets they're going to need to employ the bureaucrats who've just had a severance package from their PCT which is a waste of taxpayers money. And if there's one thing this government like to bang on about: It's taxpayers getting value for their money.

But the big, big, BIG problem with these reforms is around the role of the Secretary of State. Initially the bill removed the obligation on the Secretary of State to provide a National Health Service. This would have been the end of the National Health Service that is accessible to all regardless of ability to pay. Thousands of amendments later the bill now only greatly reduces that obligation, rather than removing it entirely. But it's still likely to see people like me with many health problems, and no money, getting absolutely shafted once the obligation to provide an NHS has been cut back.

The government keep insisting that the reforms aren't about 'privatising' the NHS. Yet we keep hearing about more and more services getting outsourced: And the bill hasn't even passed yet!

Though ever increasing outsourcing isn't really surprising when you look at the list of politicians with ties to private healthcare companies. This is all despite the fact that patient care is worse under private providers (I refer you back to my own two experiences of outsourced 'care') and our current system is more cost-effective. It's worth noting that that last linked article is not only from the Torygraph, but the writer freely admits that he has no ideological opposition to breaking up the NHS if a cheaper way of providing care could be found.

Nye Bevan famously said "the NHS will last as long as there are folks left with the faith the fight for it." I'm deeply worried that most people in Britain have become so apathetic and/or cruel (they let the horrific Welfare Reform Bill pass...) that there are no longer enough people with enough faith to keep this world leading, value-for-money, health service alive.]]> tag:www.huffingtonpost.com,2012:/theblog//3.1319908 2012-03-05T19:00:00-05:00 2012-05-05T05:12:01-04:00

Lisa Egan http://www.huffingtonpost.com/lisa-egan/
I know you're a bit busy, but I was wondering if you could help me out with something? I like to think I'm fairly clever and that my comprehension is pretty good but I'm having a bit of trouble with the blog post you wrote here on Thursday.

In your penultimate paragraph you describe the Welfare Reform Bill as being the work of a "compassionate modern government in action." I think I might need to borrow your dictionary.

I have one dictionary and it's pretty old: It's the 1987 printing of the Oxford Handy Dictionary.

Only owning a 25-year-old dictionary is why I still find myself starting letters with "yo" though we're in the year 2012. I'd buy a new one except I live on benefits and my weekly food budget is almost certainly less than your budget for just one meal. I can't afford to splash out on something as relatively luxurious as a new dictionary.

My dusty old dictionary describes "compassion" as "pity inclining one to be helpful or merciful."

It doesn't mention anything about kicking disabled kids, pooping on people with cancer, or decreeing disableds to a life of destitution. So you can see where my confusion lies.

In your first paragraph you repeat your government's catchphrase of wanting to "make work pay". You and I both know that Disability Living Allowance (DLA) is not an out-of-work benefit: It's is to pay for such things as wheelchairs or human assistance with tasks like getting out of bed. Those needs stay with you if you get a job so the benefit to pay for that help stays with you too.

In converting DLA to Personal Independence Payment (PIP) you're cutting the budget by 20% (despite the fact that only 0.5% of claims are fraudulent, as you can see from your own official figures in the table on page 12). With around half a million genuinely disabled adults losing that support it will undoubtedly include some who will become unable to work because they've lost the support that prevented them being housebound. So how exactly is preventing people from getting up and going to work making work pay?

As you know; PIP will also involve regularly reassessing people to see if their condition has gotten better. Trouble is: Disability is for life, not just for Christmas. Amputated limbs don't grow back, severed spinal cords don't heal and many causes of blindness are unfixable. My own osteogenesis imperfecta will be with me until I die. I know you have familial experiences of lifelong impairment.

The assessment process for DLA is degrading, humiliating, depressing and frustrating. The process for PIP is set to be more so. Assessing is also costly to the taxpayer, as is the process of appeals when the assessor gets things wrong. In your blog post you boast that welfare reform will "save billions of pounds of taxpayers' money." So why do you plan to continually reassess us incurables, pouring taxpayers' money down the toilet in the process? Or does incurable not feature in your dictionary? Mine says "person that cannot be cured"; has the meaning changed?

Another problem with words obviously having evolved since my dictionary was printed is that my antiquated copy defines "bathe" as "immerse oneself in liquid".

However I notice that on page 10 of the second draft of the PIP regulations "bathe" is defined as "clean one's torso, face, hands and underarms". Your definition not only lacks immersion, but also apparently disabled people no longer need to be clean from the waist down.

If one can't clean oneself below the waist one will no longer be eligible for help to perform said task. Your councillor Luke Mackenzie's remarks were frighteningly prescient when he described disabled people as "unwashed".

Having crotchrot spread among the disabled population like a plague will probably be okay though: The Observer found in 2008 that 70% of people wouldn't hump someone with a physical disability so no-one's going to mind. Except possibly in enclosed spaces.

The subject of relations moves me neatly on from PIP to Employment and Support Allowance. The bill means anyone with cancer, or MS, or Parkinson's, or anything else, who might be capable of some work at some point in the future (not immediately) will lose their income after one year if they have a partner earning more than £7,500 per annum.

I know that people like you who've never had to budget your household expenses can't understand how little £7,500 is, so here's a bit of perspective: You and your wife couldn't afford return First Class flights to Sydney with that. Forget the kids, forget accommodation: Only one of you could fly, unless you downgraded to (*whispers*) Business Class. It's simply not an amount two people can live on, especially when one has a costly illness.

You once said you wanted this to be a "family-friendly government" and, yet again, I'm having trouble understanding your meaning. I would expect a family-friendly government to promote family units of more than one which is at odds with the ESA reform.

If you can't claim an income because you've got a partner and two people can't live on their income there's only one option: Separation. Not only does this seem to be the antithesis of 'family-friendly' but it'll cost the tax payer more. Paying Income Based ESA, Council Tax Benefit and Housing Benefit to the newly single sick person is more expensive than paying them Contributory ESA and allowing them to remain in the home they share with their partner. Didn't you say something about "saving the taxpayer billions"?

I presume this is only going to affect people already in relationships. I don't think we have to worry about disabled people meeting new partners and not being able to afford to move in with them: with many people no longer able to wash below the waist I think dating will be off the cards. No-one wants to do the business with someone whose unwashed crotch can be smelled from six streets away.

Then there are those in the Work Related Activity Group of ESA being forced into workfare placements. Just to refresh your memory: the group is comprised of people who are currently unable to work, but may be able to work at some point in the future.

My pesky dictionary... I thought that being unable to work meant just that. Without an updated volume I'm struggling to comprehend how someone that isn't capable of working suddenly becomes capable of working when remuneration is removed. Then there's the fact that these ill people who've been forced into slavery will never see an end to their punishment for having the audacity to be sick: while placements for unemployed people have a time-limit, placements for ill people do not.

I suppose working the already ill into the grave is one way of achieving your aim of saving the taxpayer a few quid. It's not very compassionate though, is it? Well, not by my dictionary's definition.

While I'm on the topic of workfare, there's yet another thing that perplexes me. In your piece you have a grumble about the "something for nothing" culture. But aren't big corporations taking on staff that they don't have to pay getting something for nothing? I know, all this getting confused by your use of English; I should probably sign up for a basic reading skills course.

You say that these reforms are "protecting the vulnerable". My dictionary defines "protect" as "keep safe, defend, guard." I'm intrigued to know what yours says, because removing the Severe Disability Premium from people who are severely disabled (the clue is in the name, even I can see that) would seem to be not very defensive.

I'd even go so far as to say that it's the antonym of guarding, defending and keeping safe. I'd also put forward that ensuring severely disabled children are never entitled to an independent income and halving Tax Credits for disabled children were the opposite of "protecting the vulnerable".

You say that you're "backing individual responsibility so that they can escape poverty, not be trapped in it." But capping housing benefit so that unemployed people have to move from expensive areas with jobs, to poorer areas with less employment opportunities would seem to be incongruous with that. Is it because I went to a state school that I'm having so much trouble comprehending your post? It surely can't just all be down to my old dictionary that it appears that you're saying the opposite of what you really mean.

Gosh, is that the time? I suppose I should go and sort out my bedtime medication. Like I said, I'd be so grateful if you could loan me your magical oppositional dictionary. I could do with a reversal of fortunes in which I become happy, healthy and able to go a day without worrying about money.

Now, let me see if I can get the hang of this inverted language thing. One is supposed to sign off a letter "yours sincerely" so, would I be right in thinking that in Cameronspeak "mine insincerely" is the correct end?

Mine insincerely;

Lisa]]> tag:www.huffingtonpost.com,2012:/theblog//3.1298263 2012-02-24T19:00:00-05:00 2012-04-25T05:12:01-04:00

Lisa Egan http://www.huffingtonpost.com/lisa-egan/ Firework. Yes, I know it's fromage of Camembertian proportions. I feel like I have to justify why it's on my iPod in the first place, but it's just the kind of song that gets stuck in your head and the only way to purge it from your BrainRadio is to play it repeatedly until you get sick of it.

"You don't have to feel like a waste of space," sang Perry. Thing is; if I didn't feel like I waste of space I would seriously need to examine the size of my ego. "Waste of space" is right at the upper end of ways I should feel given that I'm vilified in the press on a daily basis, and have been for the last couple of years.

Luckily I don't mean that I, individually and directly, have been attacked by the papers. The stories are part of an attack on a minority group I belong to: disability benefit claimants. We've all seen the news stories blaming "work shy benefit claimants" for "our economic mess". The papers call us "scroungers" and even the leader of the Labour party brandished us "irresponsible".

I'm intelligent enough to know that it's not true. I may not be the world's greatest numbers person, but I still understand enough economics to know that the financial crisis had nothing to do with disabled people claiming benefits. But when you're constantly under attack it grinds you down and really forces you to question your self-worth. "You're original, cannot be replaced" emitted my speakers. Well it appears the papers would view not replacing me as a good thing. One less scrounger messing up the economics of the country, hey?

These news stories don't just have an effect on how we see ourselves when we look in the mirror; they affect how we're treated. I know people who've been called expletives in the street for having the audacity to leave the house while disabled. Polling by charities indicates that disablist harassment is on the increase. The stories are commonplace. Three cases came to my attention in the space of only two hours on Wednesday.

I'm lucky to have so far escaped harassment in person, but maybe that's because I don't get out much anymore. I have, of course, been called a scrounger and told to "get a job" by people hiding behind the veil of anonymity online because I'm pesky enough to put my head above the parapet and talk about issues like welfare reform.

People who know no details of my mobility impairment or medical issues feel they have the right to judge what I am or am not capable of. Such is our culture of suspicion around disability that even people who do know me assume that I'm actually just lazy.

The media narrative is proving effective at not just fuelling hate crime and harassment; but also allowing the government to push through horrific reforms to the welfare system with very little public objection because people have been so convinced that all disability benefit claimants are fakers on the take. Apparently the suspicion has always been there, but there can be no doubt that the recent media claims that there are so many more 'fakers' than there actually are has ramped this up.

When writing harassing articles about benefit claimants the press often rely on the same thought process that most school bullies use: life has dumped on me, so I'm going to dump on someone else. Most articles like to remind readers how hard done by they are before offering up disabled people as a scapegoat. Stories frequently read along the lines of "costs of living are going up, incomes are coming down, and then these shirkers do nothing but watch TVs paid for by you!"

Katy Perry's Firework was one of a number of pop songs released in late 2010 and early 2011 to address the epidemic of young people killing themselves due to homophobic bullying. Homophobic bullying is not the only type of bullying that kills: the cases of Fiona Pilkington & Francecca Hardwick and David Askew are a testament to that.

The fact that the media hate campaign is paving the way for welfare cuts that will see hundreds of thousands of people in the same boat as Paul Reekie, Paul Willcoxson and Mark & Helen Mullins is even more terrifying: the public can effect change when they really want to - just look at how effective the Boycott Workfare campaign has been over the last week - but sadly no-one cares enough to speak out up for disabled people anymore because of the climate of hate. Instead of reading the news of people fighting the Welfare Reform Bill as a whole, I'm reading about more cases of disabled people killing themselves.

Another of the songs from the same movement as Firework is Lady Gaga's Born this Way with the line "whether life's disabilities left you outcast bullied or teased, rejoice and love yourself today..." which is hard.

It's really hard. When every time you pick up a paper you read about how you're bankrupting the country, when every time you use social media you fear getting judged by strangers, when every time you leave the house you worry that this will be the time someone attacks you: It's just about impossible to either rejoice or love yourself.]]> tag:www.huffingtonpost.com,2012:/theblog//3.1239973 2012-01-29T19:00:00-05:00 2012-03-30T05:12:01-04:00

Lisa Egan http://www.huffingtonpost.com/lisa-egan/ spent two hours sitting in the middle of the road at Oxford Circus.

Why? To draw attention to the cruelty of the government's assault on disabled people in the Welfare Reform Bill, which finishes its journey through parliament this coming week. The government claim that "the most vulnerable will be protected", and the press keep repeating that line.

The thing is, it's not true. The press has a louder voice than those of us on the receiving end of the cuts, so most members of the public believe the government rhetoric to be true and fully support the changes.

The House of Lords have accepted amendments that will slightly dilute some of the cuts, but the government has vowed to undo them when the bill returns to the commons for reviewing these amendments on Wednesday.

The bill originally wanted to limit Contributory Employment and Support Allowance to one year, and the Lords amended this to be a limit of a minimum of two years and to exempt people with cancer from the limit. This still means that if you develop Parkinson's or MS and are still too ill to work after two years and you have a partner who earns more than £7,500 a year that you'll lose your income; but at least two years is better than one, right?

At the moment there's an income support top-up called the Severe Disability Premium for people who are, well, severely disabled. The clue is in the name. The government are removing that. The Lords didn't even put forward an amendment on that one because it would go over the proposed welfare budget.

The government plans to half tax credits for disabled children. This is despite the fact that 40% of disabled children already live in poverty before the cut comes in. The Lords voted on this and agreed to allow the cut.

Then there's Disability Living Allowance (DLA) which the government is abolishing and replacing with a new benefit called Personal Independence Payment (PIP). In doing so they plan to cut the DLA bill by 20% despite the fact that only 0.5% of claims are fraudulent (see the table on page 12 of this pdf). That's half a million genuinely disabled people losing the money we need to pay for things like wheelchairs and assistance to get out of bed.

The government are selling these reforms as being about weeding out fraud: As you can see from the four cuts I've listed, that's not the case. The cuts are about removing support from people who really need it: And I will be one of them.

I have a condition called osteogenesis imperfecta. I've had somewhere between 55 and 60 fractures in my 32 years, mostly before the age of 10 but I had a rather bad 2011 in which I managed five fractures. I'm loath to define myself as 'vulnerable', but most people would consider it an appropriate label for someone who once broke her back by sleeping in an awkward position.

Unless I've got any fractures I can walk a tiny bit and I use a manual wheelchair outside of my flat. For DLA purposes I'm considered "virtually unable to walk". Though I can walk a little bit it places so much stress on my impaired joints that they swell and become immovable quickly.

My joints also dislocate easily and my left knee sometimes pops out of its socket while walking. I once tore a tendon out of a metatarsal - pulling the tip of the bone off with it - simply limping along normally. I'm also wearing my joints out. Doctors hate wheelchairs, they see them as a sign of admitting defeat, but I've been told to use mine more than I do because I'm rapidly wearing my joints out despite still only being in my early 30s.

Because I can walk a tiny bit, even though I shouldn't, I will be losing the higher rate mobility component and with it my Motability car. I will be rendered incapable of getting shopping home because I can't carry shopping and use my hands to propel my manual wheelchair. I will also be unable to bring home the vast amounts of medication I need.

I get the care component of DLA for supervision because my bones break so easily. There is no mention of needing constant supervision in the proposed PIP criteria. Because I can feed myself, even though I once broke my arm eating, I will get no recognition for that. Because I can take myself to the toilet, even though I once broke my leg washing my hands after, I will get no recognition for that. Because I can get myself in and out of the shower, even though I once broke... you get the idea.

It's not just me. There are 500,000 other people with similar stories who'll be losing out too. 500,000 with desperately bleak futures.

So I protested this weekend. Luckily it was all very peaceful, but the need to be heard to stop these reforms was so important that it justified the risk of breaking a bone or two. It wasn't without cost, as most people who've broken a bone can tell you: Old fracture sites hurt in cold weather. Unlike most people; my skeleton is covered in old fracture sites.

Disabled people have been campaigning on this for 18 months. It's taken until this month for campaign groups like UK Uncut and 38 Degrees to join the fight. With the bill finishing its passage this week it looks like the 11th hour attempt to stop the devastating bill is probably too late.

There's a government petition to get the bill paused for review, especially important in the light of the damning Spartacus Report, but in a country of 62 million people only 25,000 care enough about disabled people to take two minutes out of their day to sign. It may have become so late that fighting has become futile but I still can't give up.

Not when I, and thousands like me, have so much to lose.]]>