Archive for the ‘ activism ’ Category

The Dreaded Pink Form 2013

This week I received a copy of the “Dreaded Pink Form”, also known as the ESA50 or Limited Capability for Work Questionnaire. I get one every 12 months and as it stands I will be getting one every 12 months until I’m claiming a pension or I’m dead. It’s so the DWP can assess my fitness for work and decide if I should still get ESA. As my condition is only expected to degenerate this isn’t something I personally feel is necessary. I could understand maybe once every 5 years if they want to keep checking but every 12 months? It’s a waste of government money, my time and damaging to my mental health. Still, as all the major political parties think it is necessary I’ve got no choice but to acquiesce and protest about it.

Picture of the ESA50 form. You can click on it to enlarge.

The first time I filled in a ESA50 I was invited to attend a Work Capability Assessment (WCA) where health proffessionals working for a IT company called Atos assessed my fitness to work. Much to the surprise of everyone I knew, my doctors and the job centre they found me fit to work. They then used that decision to turn down my application for Disability Living Allowance (DLA). It took 18 months to get the decisions over turned. During that time my disability and the high cost of living with it didn’t go away, I just wasn’t entitled to any support to help me live with it. I fell into debt and depression. Fortunately for me the appeals tribunals were both less than 15mins from start to finish because of the  abundance of evidence on my side. As a result of having to live through that nightmare I’m always very apprehensive about these forms because I know what could happen if something is misinterpreted.

It may sound a bit paranoid to suggest that they would try to purposefully trip up claimants, but as I think I can show that is precisely what this form does. It makes it very difficult to describe your condition and/or disability in a way that tallies with the criteria.
Take question 1, it asks how far you can move around without difficulty. The possible answers are; 50m, 100m, 200m or more and “It varies”. Can you see the problem with that? What do you tick if you can’t move more than 20m with difficulty? What do you tick if you can’t move more than 1m? Do you choose the 50m category and look like you can move further or do you choose it varies and then hope they don’t use the fact you said it varies to suggest the issue isn’t a permanent one? 
It’s especially telling as one of the criteria to enter the support group is not being able to move 50m. By making it so that people in that situation don’t have an easy “less than 50m” box to tick then people will be forced to tick a box that doesn’t describe their situation adequately and could contribute to a decision not to award appropriate support. I ticked the 50m box last year even though I can manage a maximum of 30m with severe pain and associated vomiting or 1-2m without. I explained that in the box below and included a letter form my GP which said precisely that. They didn’t place me in the support group until I wrote an appeal because it wasn’t “clear” from my form that I couldn’t walk 50m without pain.

A picture of question 1 in the ESA50 form. You can click on it to enlarge.

It’s not a one off either. Add to these questions the extra pressure added in by other changes to the process which include using imaginary wheelchairs and ignoring the overlap between cognitive/mental & physical health in this years ESA50’s it all becomes extremely stressful.

The good thing to come ou of this pink form is it’s reminded me that there is still a huge battle to be won with regards to ESA, and that where we may not win it all – at least not straight away – we can try to make some ground by trying to get the DWP to improve little bits of it’s system. For example, changing it’s questions so they are fairer and tally with the criteria being tested against.

I’m going to put my thinking cap on and try to work out how best to challenge the DWP on this score. Hopefully I’ll be back with some ideas!

Advertisements

Is Resistance Futile?

The 1st of April has been referred to as Black Monday by many campaigners  Over the next couple of weeks we will see many of the changes outlined in the Welfare Reform Bill (WRB) come into effect;

  • the Bedroom Tax, Universal Credit starts being rolled out, 
  • Disability Living Allowance (DLA) is being abolished and replaced by Personal Independence Payments (PIP), 
  • Legal Aid stopped being available for welfare matters, 
  • Benefits will only be uprated by 1% for the first time, 
  • Council Tax Benefit is now being controlled by local authorities and many are reducing the assistance given, 
  • the Benefit Cap hit’s in limiting all benefit payments (including housing benefit & child benefit) to £500 per week 
But… the 50p tax rate is being abolished so millionaires get a tax break. PHEW. Not all bad then.
All in all it can feel pretty bleak. Stuff like this can easily lead to people feeling; depressed, like they don’t have a voice, like no one is listening, apathetic, like fighting is pointless, angry, frustrated and bitter. All those feelings are totally valid reactions to what is happening. A point I would like to make is that these kind of policies are in part designed to make people feel that way. Like there is no point struggling against them any more, that (to borrow a Star Trek quote) resistance is futile.
I say sod that. 
We have come a massive way in the last decade and our campaigning power is still building. Social media and the internet brought us all together, many of us who up until then had felt isolated and alone. We shared stories, offered support, nattered about spoon theory and developed friendships. We talked about our experiences with welfare, prejudice, access to health, access to housing and access to work & employment. We started to see that we were not alone when Atos & the DWP declared us to be fit for work against all medical reason. We were not alone in struggling to access transport. Many of us started to see first hand that there are injustices in the world that effect us all. Then we got angry about it. That anger fulled a desire to challenge and change society. Unhappy with the representation that had been given by politicians and charities a new surge of grassroots activism developed.  
Now when reforms happen that will effect us thousands of disabled people swing into action to make sure the largely non-disabled media remembers us. We write reports. We read and analyse reports. We lobby MPs and local councillors. We talk on the TV and radio, not asking for pity but calling for society to be better. We look beyond our own backyard and talk internationally. We blog, we tweet, we raise awareness, we campaign, we talk, we act. 
I went to a mini-conference run by the Labour party in Birmingham. I asked a question which included some criticism of Atos and the whole ESA process and people gave me a round of applause. When I said “Atos” you could hear a collective “Ugh, they are terrible” style groan from the audience. I wasn’t in a room of disability rights activists, I was in a room full of people from all walks of life yet they knew what Atos was and what it means. That’s amazing! In 2009 if I said Atos to a room full of strangers hardly any ever knew what I was talking about, now most do. We did that! Our awareness raising is clearly working. In 2009 there were no stories in the news about the effects of anything from hate crime to ESA on disabled people, now there is. We did that! In 2009 I rarely heard other civil rights groups, like feminists for example, talking about intersectional disability matters, now they do. Our rising profile has done that. 
Fighting for societal change is a long game and takes time. Sadly the chances that one petition or one campaign will dramatically alter the socio-political landscape are pretty slim. That said, lots of petitions, lot’s of campaigns  not giving up and not going away can. So without further ado, for those who want to keep fighting I’ve got some ideas for you. I’ve tried to include a range of things that are accessible to most people.

Want To Do Your Bit To Change Society?

Well, here are some ideas for those who want to do activism/campaigning work – especially around disability issues – but are not 100% sure how to go about it or how best to get started.

Get a Twitter account – a lot of campaigning springs up on sites like twitter, if you want to get involved getting a twitter account can be very handy. You can tweet ideas, links to information, jokes & pictures to keep peoples spirits up, you can simply send occasional supportive tweets to other campaigners to inspire them to keep going. Be careful not to spam people though, most folks don’t like getting impersonal tweets and twitter will suspend your account – in fact, read this post by LatentExistence.

Start a blog – sites like blogger and wordpress allow for the quick and easy production of blogs. People, whoever they maybe, like to read peoples stories. Twitter only allows for 140 character posts, which can make explaining the importance of a cumulative impact assessment or your experience of a work capability assessment (WCA) pretty hard. Being able to link to a blog post you’ve written on the subject is invaluable. Once you have a blog you can use platforms like Facebook, Twitter, G+ and others to spread the word. You can do lots with a blog, some examples are;

  • Posting your stories
  • Posting your pictures/art
  • Posting template letters so people can copy them & send them to politicians (see the next section)
  • Posting lists of lots of different pre-written tweets on a theme so that people can copy & paste them onto twitter if you are doing a big action
  • Updating people with your progress
  • Explaining complex ideas
  • Introducing people/concepts
  • Celebrating success!
  • Giving readers a chance to talk/feed back via comments
  • Keep all the important information about your work in one place
Contact your MEP (Europe wide issues), MP/MSP/MLA (national issues) or Councillor (local issues) –  Firstly you need to find out who they are! I like to use writetothem.com, you can just enter your postcode and it tells you who they are and allows you to send them an email. These people are human and often (unfortunately) ignorant of or in denial about disability issues, so trying to be polite and making sure you explain the points you want to make can be very helpful. You should also try to ensure that you contact the right people. Your local councillor doesn’t have a say in the House of Commons, nor does your local MP have a vote in the local council. If you want to talk about national government policy then talk to your MP. If you want to talk about how local services are being run then talk to your councillor(s).


Contact newspapers – Journalism is less the sleuth style investigative journalism these days and more the publishing of stories that are sent to papers. If there is something going on that needs exposing then there is little point waiting for a journalist to come to you, you really need to go to them. Sending an email, tweeting them a link to so information or giving them a phone call can work wonders. Did you have a shocking experience at a WCA? Contact your local paper and give them the scoop. Think that they’ve not covered a story from a disability perspective? Contact them with details about why it would make a good story. Have you done a report? Write a press release (around 250-500 words explaining what you’ve done, what you’ve found, why it’s new, why it’s important and what your contact details are) and send it to local journalists. You can also send these things to national papers too. How do you get in contact with a paper? Well, if you go to your local papers website they will normally have a “Contact us” section, if you can’t see it use the webpages search function. My local paper is the Birmingham Mail and they have information on how to contact them & send a story at the bottom of the home page. If you click these links you can get details for the Guardianthe Independentthe Mirrorthe Sunthe Times and the Telegraph. Do try to remember that there can be negative as well as positive consequences to giving your story to national papers. You can also contact other news outlet too, like the BBC, Sky and Channel 4 news.

Take part in TV & Radio phone ins – If you hear that the radio station or TV show you are watching wants to take calls/emails/tweets/comments about a subject you are campaigning around why not give them a call? You might get 2 mins to get your point across to a wider audience. If you don’t feel up to doing it personally maybe you could share the information with others who might do it instead?

Join a political party and lobby from the inside – For example, if you want to see Labour develop better policies with regards to disability then one way of doing that is joining the party and lobbying for change. You’d get a vote on policies, you’d be able to meet other politicians and explain why some ideas they may hold about disability are possibly inaccurate and you could even try to arrange to talk at party conferences.

Talk to your friends & family – Let people know what’s happening, challenge them (politely) when they say things like “You don’t have to be worried, only scroungers will be effected”. Don’t go over the top, people tend to start avoiding you if all you do is rant at them about politics (something I wish I’d known at 24!). Try to be as polite as you can manage. If someone is insults you then you have every right to be upset, offended and angry at them. But try to bear in mind that many of these people are just repeating hear-say and media spin because these myths haven’t been effectively challenged. If you shout at them for saying benefit fraud is really high chances are they will get defensive and you’ll just end up having a fight and getting nowhere. I get the tone argument  and I really do hate people saying “I know he just insulted you a lot but don’t be angry” it can feel invalidating and silencing. At the same time we do have to remember that if you want to argue effectively and win someone over to your cause then you are more likely to stick around to listen to you if you are not actively insulting them. This post covers my point better than I can manage right now.

An important thing to remember is that preaching to the choir isn’t always very helpful. Five disability rights activists agreeing that PIP isn’t great may feel nice but doesn’t actually help spread the word or do anything to challenge the status-quo. When you are raising awareness have a think about the people you want to be talking to and the people you are actually talking to. Often you’ll find they are different and you’ll need to look for different ways of approaching them.

Join up with a grassroots group of activists – There are loads of groups out there campaigning for change and I think they’d all love more help. Here are just a few off the top of my head;

Create a campaign – if there is something that’s not being covered then by setting up a simple blog along with a twitter account and facebook page with links to writetothem.com (to email politicians) and a petition (on a site like Change or Avvaz or even a government e-petition) you have the start of a great campaign. Remember to include contact details if you do!
Lobby other civil rights groups – plenty of disabled people are also women, LGBTIQ, children, non-white British, and a whole lot of other things too. Remind feminist groups that they should campaign for issues the effect disabled women, remind groups campaigning for ethnic/cultural/racial rights that they should be campaigning for disabled people too. The easiest way to do this is to join them and ask them what they are doing for disabled members – be sure to bring suggestions for improvement with you!
Use your artistic side – if you can make clothes, art work, cartoons, web comics or write stories do so! A painting can express more than 10 blog posts, a light hearted webcomic can draw more visitors & raise more awareness than a petition if done well. A quilt displayed in a supermarket or town hall can raise a lot of awareness.
Be seen – put yourself out there, online or offline. People assume only 1 in 100 have a disability because so many of us stay quiet about it or aren’t visible. By simply “being” you raise awareness.
There are a whole host of other ways you could campaign too – be imaginative!

What Is "Intersectional" Anyway?

I imagine that if you are reading this you identify either as a feminist, a disabled person* or as an ally of feminists and/or disabled people and you might have heard the term “intersectional” or “intersectionality” used when talking about peoples rights. It might sound a bit academic, but the principle is fairly simple and extremely important so I’m going to attempt to explain it in this post.

In a nutshell: 
People are oppressed for a variety of different reasons such as disability, gender, culture, sexuality & race. There is a lot of overlap between these oppressions; we call the areas of overlap intersections. Someone who campaigns for disabled peoples’ rights in an intersectional way is aware that there are lots of disabled people who are not heterosexual, cisgendered, white men and that they will probably be living with more than one kind of oppression. Many people, myself included, believe that it is very important to remember intersecting oppressions to make sure that our campaigning is as inclusive of everybody’s needs as possible.

createlyPlayerStart( { container: “creately-container-hdk75qfy2-7M92QxCBiyluHrJ2Xdxwp2eJqA=”, docid :”hdk75qfy2-7M92QxCBiyluHrJ2Xdxwp2eJqA=”, title :”Intersections in civil rights”, width :297,height :330,bgcolor :”#e1e1e1″ } );
A very simple venn diagram showing some intersecting circles of oppression including gender, disability, sexuality, nationality & race.
In a bit more detail:

If you are a disabled person or an ally to disabled people I assume you will be no stranger to the idea that our society is, at it’s core, disablist. The majority of people in positions of power are non-disabled and this is in a large part because disabled people are still routinely silenced, dismissed, ignored or refused access to the necessary tools to be able to communicate meaningfully. They are frequently excluded from politics, from decision making and from society as a whole because of damaging and deep seated idea’s about what disability is or means. It results in a large gap in pay, employment prospects, education, access to health care and access to independent living between disabled and non-disabled people. The power gap between disabled and non-disabled people is frequently abused and results in disability related hate-crime, abuse & harassment whilst the successful prosecution of such crimes remains woefully low.

If you are a feminist or an ally to feminists then I assume you will be no stranger to the concept that our society is still very sexist. The majority of people in positions of power are male and they decide what media we consume, what policies we follow and how our laws are applied. Sexist stereotypes brand men as strong, powerful, aggressive, logical and confident and women as weak, passive, caring, guided by emotion and small and they have damaging effects on men & women alike who do not fit those very constraining moulds. There is a large gap in pay, caring expectations, attainment and employment & educational choices between women and men. The power gap between men and women is frequently abused and results in statistics like 1 in 4 women being domestically abused in their lifetime, 1 in 5 women being sexually assaulted or stalked whilst the chances of getting these crimes taken to court is still low.

I would hope that it doesn’t come as a shock when I now say that as well as people being discriminated against because of their gender/gender identity (or perceived gender) or because they are disabled (or perceived to be disabled) are also discriminated against in remarkably similar ways because of their race (or perceived race), age (or perceived age), sexuality (or perceived sexuality) and beliefs (or perceived beliefs).

We can also see that where there is an overlap of identities (or an intersection of identities) people face extra discrimination. I will take the example of disabled women quickly to illustrate this point. Disabled men get paid on average 11% less than similarly qualified non-disabled men doing the same job. Disabled women get paid 22% less than disabled men when doing the same job**. They effectively take one pay cut because of disability, then another because of gender. Disabled women are more than twice as likely to experience domestic/intimate abuse than non-disabled women.

When human/civil rights campaigners talk about taking an intersectional approach they are talking about remembering that there are other forms of oppression active and that these need to be taken into account. It is important to remember that when talking about women’s rights that many of those women will also be one or more of the following; disabled, working-class, black or minority ethnic (BME), lesbian, gay, bisexual, trans*, intersex, queer (LGBTIQ) and/or hold cultural & religious beliefs that differ to the ‘norm’. When women’s rights campaigning ignores those areas it is complicit in further marginalising these women on the basis of their other characteristics.

Intersectionality is not about who wins the “most oppressed” award, nor is it about derailing or silencing conversations. The joy of intersectionality is that it raises questions for everyone and widens the scope of conversation, debate and dialogue. It is a tool which can be used to improve campaigns, make for a far more inclusive environment and to remind people not to assume that everyone has an equal and shared background. I don’t know about you but I personally don’t want to see advances in feminism that set LGBTIQ people back in their fight for equality and nor do I want to see advances in disability rights that ignore the reality of sexism that the people it represents experience.

I’m going to stop there. Hopefully that has given a basic introduction to the concept and hopefully it will have made some sense.

* In this post when I talk about disability I am talking about people who have an impairment and are disabled by a society that oppresses them as a result. My definition of disability includes long term sickness/illness and conditions like HIV.
** See Longhi,S. and Platt, L. 2008, Pay and equalities areas. Research report 9. Equality and Human Rights Commission. Also covers pay gaps with regards to other protected characteristics.

Updated PIP Assessment Guide

The government have provided another update to the PIP Assessment Guide. It’s still not the final version, but it’s the best we have to work with so far.

Before I go any further, this guide isn’t legislation. It’s not the law but it is the guidance ATOS/Captia (depending on where you live), the DWP and Tribunal Judges should be working from when making decisions.
The two area’s of particular concern many of us campaigners raised in response to Decembers release of PIP criteria were; the loss of reliably, repeatedly  safely and in a timely manner from the legislation and the reduction of the distance people need to be able to physically mobilise to automatically get the enhanced level of PIP from 50m to a puny 20m. Naturally I would like to see the former put into legislation for added protection and the latter decision reversed. As that hasn’t happened (yet) I think it’s important to look at how the guidelines will/won’t protect us if we are unfortunate and do not manage to get those changes made.
These two areas are covered in section 3.3.Reliability.
The document says;

“3.2.7. For a descriptor to be able to apply to a claimant, the claimant must be able to reliably complete the activity as described in the descriptor. More information on this can be found in section 3.3.”

Then goes on to say;

“3.3.1.Central to the application of all the activities within the PIP assessment is a consideration of the manner in which they are undertaken. If an individual cannot reliably complete an activity in the way described then they should be considered unable to complete it.
3.3.2. Considering reliability involves looking at whether the claimant can complete the activity as described:
• Safely – being able to complete the activity in a fashion that is unlikely to cause harm to themselves or to another person.
• To an acceptable standard, given the nature of the activity.
• Repeatedly – being able to repeat the activity as often as is reasonably required.
• In a timely manner – being able to complete the activity in a reasonable time period.”

Which is fairly reassuring, it means that the assessors shouldn’t apply a descriptor unless it meets the reliably, repeatedly, safely & in a timely manner conditions. You can read up on example of those in the guide (Section 3.3, page 72). Of course those with fluctuating conditions have been pretty confused about how these four descriptors should be them. That is covered by the guidance too, it says;

“3.2.9. A scoring descriptor can apply to claimants in an activity where their impairment(s) affects their ability to complete an activity, at some stage of the day, on more than 50 per cent of days in the 12 month period. The following rules apply:
• If one descriptor in an activity is likely to apply on more than 50 per cent of the days in the 12 month period – i.e. the activity can be completed in the way described on more than 50 per cent of days – then that descriptor should be chosen.
• If two or more descriptors in an activity is likely to apply on more than 50 per cent of the days in the period, then the descriptor chosen should be the one which is the highest scoring.
• Where one single descriptor in an activity is likely to not be satisfied on more than 50 per cent of days, but a number of different scoring descriptors in that activity cumulatively are likely to be satisfied on more than 50 per cent of days, the descriptor likely to be satisfied for the highest proportion of the time should be selected. For example, if descriptor ‘B’ is likely to be satisfied on 40 per cent of days and descriptor ‘C’ on 30 per cent of days, descriptor ‘B’ should be chosen. Where two or more descriptors are satisfied for the same proportion of days, the descriptor which is the highest scoring should be chosen. ”  

Taking this as it stands it means that theoretically the DWP, Atos & Captia should have a hard time excluding people who should be covered by this umbrella. Of course they’d have a harder time if those words were in the actual legislation.

It’s not a win, but I feel it’s quite positive. The guidance isn’t overly vague which will make it harder for them to find loop holes. I do think it’s quite harsh in some areas, take this example;

“Mr X is able to stand and move unaided. He can comfortably walk up to 150 metres at a normal pace. After 150 metres he starts to become breathless and to experience some mild pain. He can continue to walk but his pace slows. The pain and breathlessness gradually increases and after 250 metres he needs to stop and rest for about 5 minutes before starting to walk again. Mr X can repeatedly walk 250 metres, with short 5-minute rests in between for around an hour. After an hour of this, he needs a longer rest of about an hour before walking again. It takes Mr X around four minutes to walk 200 metres.”

It then explains that Mr X would be judged as being able to mobilise safley, reliably, repeatedly and in a timely manner. I think that underestimates how short that kind of distance is and how hard it can be to find somewhere to rest. It also doesn’t look at the psychological implications of having to walk until you are in agony then stop, rest and do it all again. Though I suppose that would be covered by activity 11, planning & following journeys.

“The second area of concern is activity 12, moving around. The guidance has the following notes added to it; 

This activity should be judged in relation to a type of surface normally expected out of doors such as pavements on the flat and includes the consideration of kerbs. 

20 metres is considered to be the distance that a claimant is required to be able to repeatedly walk in order to achieve a basic level of independence in the home.
50 metres is considered to be the distance that a claimant is required to be able to repeatedly walk in order to achieve a basic level of independence outdoors.
50 to 200 metres is considered to be the distance that a claimant is required to be able to repeatedly walk in order to achieve a higher level of independence outdoors. 

Standing means to stand upright with at least one biological foot on the ground with or without suitable aids and appliances (note – a prosthesis is considered an appliance so a claimant with a unilateral prosthetic leg may be able to stand whereas a bilateral lower limb amputee would be unable to stand under this definition). 

“Stand and then move” requires an individual to stand and then move independently while remaining standing. It does not include a claimant who stands and then transfers into a wheelchair or similar device. Individuals who require a wheelchair or similar device to move a distance should not be considered able to stand and move that distance.  

Aids or appliances that a person uses to support their physical mobility may include walking sticks, crutches and prostheses.

When assessing whether the activity can be carried out reliably, consideration should be given to the manner in which they do so. This includes but is not limited to, their gait, their speed, the risk of falls and symptoms or side effects that could affect their ability to complete the activity, such as pain, breathlessness and fatigue.  

However, for this activity this only refers to the physical act of moving. For example, danger awareness is considered as part of activity 11.”

The descriptors have been altered as well, they now read;

A. Can stand and then move more than 200 metres, either aided or unaided. 0pts
B. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. 4pts
C. Can stand and then move unaided more than 20 metres but no more than 50 metres. 8pts
D. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10pts
For example, this would include people who can stand and move more than 20 metres but no further than 50 metres, but need to use an aid or appliance such as a stick or crutch to do so. [Not including wheelchairs]E. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12pts
F. Cannot, either aided or unaided, i. stand; or ii. move more than 1 metre. 12pts

This is a slight improvement, in that we now know that wheelchair users who need a chair to mobilise 20m or more are protected. Still, it’s far less than ideal. It would be far better if the distance was raised from 20m to 50m.

There has been a huge tide of negative news around the PIP changes recently, which whilst fully deserved, is also very upsetting when it’s all you hear & read day in and day out. I think we should take what positives we can from this. That’s not to say that we shouldn’t keep campaigning to get the changes made that we want to see, but that we should all take a few seconds to pat ourselves on the back before plugging onwards. These changes would not have been made without the tireless campaigning and awareness raising work hundreds of disabled people across the country.

If you want to keep fighting these changes you can have a look at the We Are Spartacus campaign group website for ideas and to keep up-to-date with developments.

A Response To Philip Hensher’s Article

Dear Philip,

I read your article (Some people on disability benefits are fit to work) yesterday and I saw the backlash on twitter. I have some thoughts on it and I wanted to share them, as a disabled woman with both physical and mental health problems who has been through the wringer with the DWP and it’s WCA process plenty of times.
I read every word and upon finishing was struck by two things. Firstly, that whilst apparently arguing for  some form continuing assessments of sick & disabled benefit claimants you were against the Work Capability Assessment in it’s current form. That is something I applaud. I too am against the current WCA’s. I’m very glad to hear you speaking out against them and I would love more voices to join the throng. 
The second is that whilst suggesting that there is some need for assessment you (I assume accidentally) propped up some rather pernicious myths about people claiming disability benefits. I hope you can understand that for many of the people that will have been attracted to read your article that might have made pretty painful reading. I will just go through some of those myths now as I assume you might not be well versed with them.
That there is a high percentage of people claiming these benefits that shouldn’t be.
You devote about 50% of your article to talking about people who defraud the system. I would argue that this is providing false balance to these stories. The DWP’s own statistics show that less than 1% of claims are fraudulent. You are not the first person to cover the issue in this manner (either to make it seem more contentious or exciting, or simply because you believed it to be true because of the media coverage you have ingested) and nor will you be that last. The problem is that many of us are suffering, I personally believe, in a huge part to the false balance given to these stories.
As a wheelchair user I have noticed the abuse I receive in the street has changed over the last few years. It’s no longer about how I look (funny, disgusting) or about how I might be “catching”. Instead it is about how I am probably a lazy, workshy, scrounger and a benefit fraud. People feel free to approach me in car parks and ask if I really need the blue badge parking space or if I just use the chair to get a free car. It’s painful and it’s part of my day-to-day existence. It’s part of many other peoples too. There has been a huge rise in disability hate crime over the last few years. I assume from what you have written it is not part of your everyday life, but I don’t know. When people for whom this is their day-to-day reality read articles like yours they often have an (understandable) emotional response which can vary from sadness to anger. I became pretty despondent personally as what I thought was a very promising piece propped up the “scrounger rhetoric” as many of us call it. I hope you can see that when people in the media spend as much, if not more time talking about scroungers the effects on the vast majority of disabled people 
That mental health conditions are not as debilitating as physical health ones.
The way (or tone) you take when talking about people who claim benefits for mental health conditions such as anxiety and depression seems pretty sceptical to say the least. This reader at least felt like you were either ignorant of the how severe these conditions need to be to claim ESA or you were suggesting they weren’t really very debilitating. As I hope you are aware many people who live with mental health conditions are routinely told to “snap out of it” or are treated as if it is something they could just “get over it” with the right motivation and the way they were talked about in your article felt like you too were propping up this myth. I know that many people who responded angrily to reading your article were most hurt by this sentiment.
But, I can’t talk about other people. that’s not my place and those aren’t my stories. I can however talk to you about myself. I have a mental health condition, Post Traumatic Stress Disorder in fact. I also have a chronic pain condition stemming from a lot of damage to my abdomen and the nerves within. I have quite a bit of personal experience of dealing with both kinds of health issues. Thanks to the PTSD I can’t manage 15 mins in a whole host of seemingly innocuous environments (for example; being near petrol or the sound of breaking glass) because they trigger flashbacks during which I relive experiences that were so horrific the first time around they left me with a mental health disorder. I would often describe this, to those I would really rather not have a huge conversation about this stuff with as panic. In my experience panic can be as debilitating, if not more so than severe physical pain at times. Panic, fear, terror, fight or flight responses, what ever you want to call it is extremely unpleasant and can govern a persons life. We need to remember that when we talk of claiming ESA for anxiety or panic disorders we are not talking about people who experience panic on a once a month basis, if we were then they would not be getting ESA. We are talking about people who often experience it multiple times daily to the point it may stop them talking to strangers, leaving the house or wearing certain colours. It will also often have physical manifestations such as uncontrolled shaking, nausea, pain & high blood pressure. Someone who can cycle for over 15mins but can’t talk to people without crying and shaking in fear isn’t very likely to be employed. All because it is a mental health disorder does not mean it’s any less likely to be disabling than a physical health problem. 
That some conditions are more worthy than others
You mention obesity in your article and say that “The only possible purpose for public expenditure there is to help them back into fitness for work.” I feel the same way reading this I did when the Daily Mail published it’s bogus article about the parents of lots of children with ADHD being given free BMWs. There is a gulf of misunderstanding when it comes to these statistics which list which disorders people have and what they are claiming. Many people claiming ESA or DLA have more than one condition but the DWP only bothers to record the first condition listed on it’s forms. So, for example someone with ADHD, Obesity & EDS will only be recorded as claiming one of those conditions, possibly ADHD or obesity. It’s hardly ever as simple as black and white as it looks.
I also was disappointed that you used your platform to in many ways make it seem as if obesity (to a disabling enough level one would be able to claim ESA) is a lifestyle choice/moral failing and that people shouldn’t be supported. I hope you realise that obesity is often a side effect of many medications (steroids, beta blockers, anti-seizure medications etc…) as well as medical conditions  either directly (such as PCOS, Cushings & Prader-Willi syndromes) or indirectly by limiting activity or changing diet (such as arthritis & drepression). Even forgetting all of this I personally believe that if someone can’t mobilise, breathe, manage continence of anything else similar then regardless of the reason behind it those people deserve support. If we start deciding what conditions are worthy of being disabling rather than looking at the effects of conditions upon individuals we risk leaving a lot of vulnerable people behind.
I believe that you could have written the same article, which I believe can be summed up as “The WCAs as they stand need to stop but that we should talk about what will replace them that will be fair to everyone”, without using the afore mentioned problematic dialogue.
I’m going to leave it there, because I’m tired of writing and I’m sure you are growing tired of reading criticism. I do really respect you for having tried to take a stand against the WCA’s and I’d love to see you continue to write about these issues in the future but I’d also like it if you could try and consider how you talk about sickness, mental health problems & disability when you do so.  
Warm Regards

[Edited to correct typo]

Imaginary Wheelchairs & Other ESA Changes

As you may or may not know on the 28th January they are making some more changes to ESA assessments. Both of the proposed changes are dangerous and counter productive (unless you want to produce a super-flawed, biased and unfair system). They go a little something like this;

Imaginary Aids, Adaptations & Treatments

In a nutshell, they will be changing the system so that if a person could do something with appropriate aids/adaptations or has a condition that sometimes benefits from a specific treatment (even if they don’t have access to them) they can be judged as if they do. They also do not have to ask your opinion about it.

An example would be; a person who attends a meeting and explains that because of a condition, let’s choose chronic pain, they cannot walk 50m. The assessor decides that they think that with a wheelchair they could do it. The assessor then says nothing to the claimant and notes it on the assessment form. The person is then found fit for work or placed in the WRAG rather than the support group on the basis of an imaginary wheelchair. Of course, they don’t then give the person access to a wheelchair. They just seem to expect them to magic one out of thin air. Bitter experience has taught me that the NHS doesn’t give wheelchairs to a lot of people who would benefit from them. It’s also taught me that getting a NHS wheelchair doesn’t mean you can use it. If your home is at the bottom of a hill, has steps in and out, doesn’t have wide enough halls or door ways or any other number of issues are at play the chair is just a (often) ugly reminder that you can’t get out. Getting your home adapted for a wheelchair is very difficult at the best of times, heaven forbid you privately rent and your landlord doesn’t want you to ramp the front garden. All this doesn’t take into account our imaginary claimants ability to propel a wheelchair either. It would be laughable if it wasn’t a real threat.

The same goes for treatments. Did you turn down CBT for Fibromyalgia? If they think it would have made it better then they can “imagine” how you may have been if you’d had it and assess you accordingly.

Ignoring the Intersections Between Physical & Mental Health

The ESA50 (the pink form claimants get sent asking them to detail their conditions) is split into two sections; Part 1 (‘Physical Disabilities’) and Part 2 (‘Mental, cognitive and intellectual function assessment’). At the moment people who experience problems such as poor bladder control because of a mental or cognitive disability will explain that in part 1. Now they are proposing to make it so that only the effects of “a specific bodily disease or disablement” will be considered in part 1, whilst Part 2 will only consider the effects of “a specific mental illness or disablement”.

This is a massive issue as many conditions have both mental/cognitive and physical components. It’s also problematic because many physical health problems exacerbate mental health conditions and vice-a-versa. 

How to help


Sue Marsh over at Diary of a Benefit Scrounger has issued a rallying cry and offers some great advice about what you can do to help fight these changes (link to her post). 

You can email your MP by going to this webpage and searching for them by your constituency and send them a link to this report. If you don’t want to email them then you can tweet them with a link to the report saying something like “Dear [MP name] please read this report about damaging changes to ESA http://www.ekklesia.co.uk/ESAbriefing  #esaSOS”.

You can try to spread the word by tweeting, emailing & facebooking others (friends, family, reporters, councillors , and asking them to spread the report too.
Advertisements
%d bloggers like this: