What's Wrong with Personal Independence Payments?

I put this together in my snail-like manner over Christmas, together with two other posts about the Welfare Reform Bill which is going to the vote in the House of Lords in the next few weeks. I mean these posts to be a basic primer for anyone who doesn't know what's going on with disability benefits in the UK. Tomorrow, Kaliya, Sue and others are publishing their research project on the way the government has handled the abolition of Disability Living Allowance, so it seemed a good moment to post my little summary.

Personal Independence Payments are set to replace Disability Living Allowance, a UK state benefit awarded to disabled people who need help getting around or looking after themselves. This benefit has nothing to do with whether or not someone is in work, and is not means-tested in any way. The current criteria are very strict, fraud is estimated at under 0.5% and legitimate claimants frequently have to go through a demoralising appeals process in order to get the benefit. Despite the public shock at Sue's recent rejection, I don't think I know anyone with a subjective condition (one dominated by pain, fatigue, weakness or mental symptoms) who has not been turned down at least once. In fifteen years, I have been turned down twice, appealing successfully both times.

The Government have made it clear that they wish to reduce the DLA caseload by 20%  in order to save money. There is no evidence, not a scrap, that anyone claiming DLA has more money than they need - check out the Where's the Benefit? Podcast for some examples of what this money is currently spent on. The Government have also frequently muddled the issues of Disability Living Allowance and incapacity-type benefits, speaking as if reducing the numbers on DLA equates with getting more disabled people into work. On the contrary, DLA is an essential benefit which enables many disabled people to stay in work.

The criteria for Personal Independence Payments [pdf] are not yet set in stone, but they are stricter than the already very narrow DLA criteria and there are some things which are quite clear. In May, Lisa read the draft criteria and found that she, as someone with congenital impairments and chronic illnesses which stop her working, walking more than a few steps and put her at ongoing risk of broken bones (she has broken her back rolling over in her sleep), would be entitled to nothing.

 The most significant changes are:

•  Someone who is able to propel their own wheelchair will be treated as if they have no trouble getting around at all, as if anywhere they might work, live in, shop or visit and any vehicles they travel in will be completely accessible. This is an absolute disaster for manual wheelchair-users.

• The need for ongoing supervision is not mentioned in the PIP draft criteria. Currently, DLA is awarded to people who need a great deal of supervision at home (e.g. to be around if they fit, fall or faint in dangerous cirumstances, to make sure they don't harm themselves or wander off etc). Quite obviously, if people don't have the supervision they need, they are going to run into serious trouble.

DLA is a gateway benefit. For example, if you are in receipt of the middle or higher rare Care Component of DLA, then a partner, friend or family member who is unable to work full time because of their caring responsibilities may be able to claim Carer's Allowance.  Receiving some rates of DLA can mean being exempt from VAT when you buy essential equipment.  If you are in receipt of the higher rate Mobility Component of DLA, you are automatically eligible for a Blue Badge. You can also use your benefit to rent a suitable adapted car through the Motobility Scheme (nobody gets a free car!).

The Blue Badge and Motobility Schemes subsidise disabled car-use for a very good reason. While many non-disabled people regard their cars and car use as essential, people with mobility impairments have absolutely no choice about needing to use a car, needing to park in busy or expensive car parks or directly outside the place they're going to, including their own homes.  Often we don't have any choice about the type of car we need, because we need adaptions or we need a large enough vehicle to carry paraphernalia like wheelchairs, scooters and so on. Many wheelchair-users will lose this help altogether.

These changes are going to lead to  

1. A major increase in unemployment among disabled people. 

Public Transport is not wheelchair accessible and even when it is, wheelchair-users frequently face discrimination. The move to PIP will mean that some employed wheelchair-users will lose their means of getting into work, if they are no longer eligible for the Motobility scheme and can't otherwise afford to run a car or take taxis everyday. Wheelchair-using job-seekers will have their chances of employment reduced even further, because they may not be able to travel further than they can roll.  Given that, as Emma points out, even our streets and pavements aren't yet fully wheelchair accessible, this may not be very far at all.

The changes to the Care Component will also effect people's ability to work in less obvious ways.


2. A major increase in hospital admissions, medical emergencies and preventable deaths among disabled people.

Last month, Lisa wrote a powerful post about the new PIP, describing how she wouldn't survive without the help she currently gets, and if she did, her quality of life would be so poor that it would not be worth going on with. If disabled people don't get the help we need to pay for support, appropriate equipment, transport and so on, then depending on our cirucmstances and personal priorities, then we will be forced to

•  Do much less. Go out less, have less social contact, quit our jobs, get less exercise, shop less, cook less, maybe eat less and certainly wash less. None of this is good for our physical or mental health. Our worlds will shrink and our health, happiness and life expectancy will adjust accordingly. 

or

• Try to manage without the appropriate support, equipment and so on. This could mean attempting to push beyond our limitations, until our bodies or minds give up and things start falling off. Where there is a need for supervision, managing without supervision is likely to prove extremely dangerous. The physical isolation involved in losing our cars or money to get around is far more dangerous because we are disabled. 

People spend their DLA on a whole variety of different things, as you can hear in the Where's the Benefit? Podcast. Some of those items are about quality of life, such as being able to leave the house, see friends and family and so on. But most of these things are about survival; eating, basic hygiene, getting appropriate rest and sleep, taking medication, attending medical appointments and so on.

Without this help, people will get sick, people will get hurt and some people will die.
  


3. A major increase in the social segregation of disabled people. 

Sometimes people remark that there seem to be far more visably disabled people about these days; wheelchair and scooter users, people with white canes or assistance dogs, people walking with sticks or crutches. And you know what? This is almost certainly true.

Some of us could only have survived infancy in the last three or four decades. Some of us wouldn't survive even day to day life without modern medicine. However, a huge number of us would have lived, but would have never been able to leave the house even twenty or thirty years ago. And then, even if we did, there would have been not much to do and not many places we could go.

As Mary says, disabled people are not dead. Most of us are capable of living full and enjoyable lives, if we get the help and accommodation we need. DLA has played an important part in that.

Disability Living Allowance has been a huge part of increasing equality for disabled people.  It has been our means of working around the problems of a disabling world, our means of, at least partially leveling the playing field and doing it ourselves - not relying on charities or government organisations to determine exactly what we need in the way of transport or help at home. Personal Independence Payments threaten this for a great number of people.

Disabled people occupy the UK / Occupy Sheffield access info

While I hadn't been able to join an occupation on a Sunday, I went to my local occupation this afternoon and spent an hour or so there drinking tea and putting the world to right. What follows is not an in-depth access survey, but is rather the impression I got, based on the information I was told or observed.

The Sheffield Occupation is in front of the Cathedral, so trams and buses stop nearby. It is on a flat courtyard and while there are some steps to access it from some directions, there are sloped alternatives alongside them.

The Occupy Sheffield has one portaloo, which is not accessible. The local Quaker Meeting House is offering the occupiers use of their toilets, and they do have wheelchair accessible toilets on each floor (with lift access to each floor). Once they close from 9pm - 9am, use of the portaloo begins, excluding many disabled people from using it.

The closest Changing Places toilets to the site are at Sheffield Town Hall and at Ponds Forge Sports Centre.

They have generators for electricity, but try to only use these at night. They also have gas heat, which is basic. If you need electrical power for any of your equipment, this could be problematic at the Occupy Sheffield camp. If you have a need to keep warm that would go beyond wrapping up really well, then again it may be an inaccessible protest for you in that respect too.

There is a good supply of food and hot drinks. I was the only visibly disabled person at the camp when I was there, but talked to a man who was a mental health service user. Another disabled person had clearly been at the camp at some point too. This photo is of a piece of paper taped to the main tent, which reads "I am one of the few disabled people who has a job. I am mad about what our society has become. I am the 99%".

The photo at the top of the post is of the main tent. It has a large banner on it, reading "Occupy Sheffield", and another fabric banner reading We Heart NHS. It was taken by me.

How I spent March 26th

Based on the TUC's access info I'd planned to meet a bunch of other WtBers in Savoy Street for 11am. This was supposed to be the gathering point for disabled people to have a "safe space" at the front of the march. I have brittle bones and I was with 2 people whose joints dislocate easily so the notion of a "safe" space where we wouldn't get smacked around was pretty important for us to protest, you know, safely.

Apparently no-one hit the TUC with a clue stick. The gathering point in Savoy Street wasn't actually at the front of the march. That would've been much too sensible. They had us gather in Savoy Street and then walk through the crowd to get to the front of the march:

The pink cross on the map shows where we gathered and the turquoise line shows how far we had to walk through a sea of people to get to that "safety". Moving through large crowds as a wheelchair user is not easy at the best of times. You're at arse height to everyone else and people don't tend to look down when they move around so they walk into you, trip over you and generally leave you feeling pretty bruised. Add banners, flags and other things that feel like weapons when people hit you with them and it's even worse.

So that the TUC had us gather some distance away and then walk through the crowd where we got a bit battered was a serious common sense fail. Between the lack of logic and getting smacked around I started off the march really quite pissed off.

This was us gathering in Savoy Street looking cheerful prior to our adventure through the crowd:

This was my view of people's backs as we were making our way through the crowd:

And it's worth noting that I took this photo at a point while walking through the crowd when I had enough room around me to actually do so! I spent a lot of the time using my arms to protect my face from people's backpacks and such.

Eventually we did make it to the "special" spot:

Jack as taken by his wife Emsy

Thankfully once we'd made it through the crowd and the march set off there were no more such access fail dramas. As a result I began to really enjoy myself. The following 3 photos were taken by Emsy during the march:

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We made it into Hyde Park at about 1pm (after what seemed like quite a long human traffic jam at Hyde Park Corner). Most of us quickly nipped to the loo and then headed off to Soho Square for the UK Uncut comedy at 2. I didn't want to stick around in Hyde Park for the rally mainly because Mr "I'm in favour of cutting disability benefits" Miliband was speaking. I feared my anger at him would cause me to regress a few evolutionary steps and start flinging faeces.

I've always been disabled, but until about 5 years ago I was perfectly "healthy"; I was free from illness. For many people there's a massive overlap between "illness" and "impairment", but there's also some differences too. So I've always had a rubbish skeleton but before I acquired a plethora of illnesses unrelated to my mobility impairment I used to do that working-for-a-living thing.

I used to be a stand-up comic. Yes, I'm aware of the irony of a wheelchair-using stand-up.

On Friday evening while I was in the supermarket shopping for more T-shirts to iron the WtB logo onto a thought occurred to me: "It's comedy against the cuts. I'm doing all this stuff about the cuts to disability benefits and I have a background in comedy; I should be speaking." So I emailed the organisers and asked if I could do a short set. The reply I got back was "the line up's pretty full, but we'll try and fit you in." But in the end (and with a little help from the lovely Johann) I ended up on the bill.

This photo by Chris Coltrane who compered the gig shows what the crowd looked like from where the acts were (and makes me happy that I ironed the WtB logo onto the back of my T-shirt):

That's Josie Long performing. She opened the show. The crowd had gotten much, much, bigger by the time I went on. This CiF piece estimates there were nearly 1000 people watching the show. I wouldn't have thought there were quite that many, but there were certainly a couple of hundred.

Against all the odds I had a brilliant gig. Look, people were smiling and laughing!

Photo by Noa Bodner

If you look you can even see Mark Thomas laughing along in that pic. I'm actually quite proud of that as he is, basically, the industry standard to which all political comedy gets compared.

I say "against all the odds" because by rights I really should have died on my arse. It's 3 and a half years since I last gigged due to becoming too ill to carry on with the comedy thang. Usually if you take a break from comedy for 3 and a half weeks you come back to find your timing's a little off and your rhythm's a bit out. And I wasn't doing tried and tested material, I was doing stuff that I'd written 12 hours earlier because I only had the idea to ask to go on about 18 hours before I ended up on "stage". I shouldn't have been "in shape" enough to deal with a heckler and turn around a joke that was a bit of a dud. OK, the heckler was very nice and friendly but it's still an interruption to your rhythm and you need to regain control and come out on top with a laugh.

Somehow it was all OK. Sure, it wasn't my best gig ever but given everything going against me it went so much better than I could ever possibly have dreamed of.

In the past I used to mix up jokes about disability issues and other stuff because if I'd only talked about disability I'd never have been able to hold the attention of a non-disabled audience. But given that Saturday was such a political gig and the reason I'd asked to speak was to talk about benefits I did a set solely about cuts to disability benefits. The only reaction I was really expecting was some polite applause when I finished from people thinking "aw, wasn't that nice the disabled woman telling us about benefits." I wasn't expecting such a warm response and to come off stage to have all my friends hug me at once. It was like being mauled by an octopus, but in a nice way.

I've always thought that comedy had a wonderful capacity for education, another reason I really wanted to speak. So I was chuffed to bits when I got home to read this in The Guardian's Live Blog about the day:

I just spoke to two teenagers aged 17 and 19 who have come from the comedy show in Soho Square, and they said that what they heard there made them think more than anything they have ever learnt at school. It's their first demonstration and when I asked why they came they said they realised that the demonstration is about more than just the UK.

They can understand the connection between the shops and the banks that people are targetting and the global situation that is effecting everyone. They've heard Mark Thomas and a disabled comedian and Johann Hari speak. For these teenagers the protest is absolutely opening their minds to a much wider picture.

Noa, who snapped that pic of me in action, said:

you rocked it woman, it was FUNNY and also very disturbing to learn a few of the stories you shared. many thanks and please keep healthy and get back on stage where you belong!

I'm absolutely thrilled that I opened some people's eyes to what's going on for disabled people in the UK. There's a couple of extracts from my set in the Laugh Out London podcast.

I left Soho Square on such an adrenaline high. I'd taken a huge gamble in asking to do a set but it absolutely paid off. I would have skipped home if I could, you know, skip.

Then came the sadness. I love doing stand up so much. It's such an amazing feeling when you've got hundreds of people laughing at jokes you wrote, and Saturday was a reminder of just how thrilling it is. It's so painful that I'm not well enough to perform any more. I have good days and bad, Saturday was obviously a good day. But the sheer frequency of the bad days means that I can't book gigs more than 14 hours in advance because I can never guarantee that I'll be well enough to show up. It doesn't matter if you have a legitimate reason for not showing up to a gig, if you let a promoter down they're not going to book you again and will very possibly bad-mouth you to other promoters. I have this thing that I love doing, and Saturday reminded me that I'm actually reasonably good at it, but my health prevents me from pursuing it. And the government and tabloids really think I'd rather be stuck at home claiming benefits than out following my dreams?

The other element of sadness on Saturday night came from watching BBC News attributing the Black Bloc protesters smashing things up to UK Uncut. UK Uncut are a group of peaceful protesters who'd given me this wonderfully enjoyable afternoon of comedy in a park. And here these lovely people were being falsely accused of violence and vandalism. It was deeply disappointing.

Despite the day starting with access fail and ending in sadness I don't think I'll ever forget that chunk of a few hours in the middle where I had the best time I've had in years.

Cross-posted on my personal blog.

The TUC, March for the Alternative and Language Discourses which Promote Exclusion.

Two blog posts were brought to my attention yesterday that really merit a post each, but I don't currently have the capacity to do that, so they will have to share a space.

Firstly, an open letter to Brendan Barber, the General Secretary of the TUC, from Disabled People Against Cuts.

This letter is appealing to the TUC to work with them to make the March for the Alternative on the 26th March, more accessible to disabled people. They point out that

At the latest count it was found that disabled people were facing fourteen separate attacks against our lives and living standards as a result of the Coalition government’s policies. What we are witnessing is our human rights, supposedly guaranteed under the United Nations Convention on the Rights of Disabled People, being violated by regressive and draconian cuts to benefit and care funding.

and ask that disabled people are as " fully included in this march and rally as our non-disabled peers would take for granted".

Disabled People Against Cuts have clearly explained the numerous barriers to disabled people's participation in this event, and have as yet failed to get a response from the TUC about their suggestions of ways to improve access.

Given how horrifically the cuts ahead are going to affect disabled people's lives, it seems that we should be at the forefront of planning such protests, not ignored and sidelined.

The second is a post from My Political Ramblings about Welfare Claimants and the Discourse of Threat, and articulates really well the process of scapegoating, rhetoric and stigmatisation involved in making the cuts to disability benefits acceptable to the public. This is a really insightful and useful post, and is well worth reading.

**Edited to add, as I posted this, Lisa posted simultaneously that the TUC have now released access information. Please check her post for the most up to date information.**

(Cross posted at incurable hippie blog).