Wednesday, 22 July 2015

Defining sickness in welfare

In recent years with the draconian welfare reforms there has been increasing tension between what has been known as "old school" disability activists and "welfare reform" activists.
One key dispute is that one side refuses to acknowledge that there exist people who are "too sick to work", while the other is undermining the progress made over the past few decades obtaining key rights and support enabling us to enter the workforce.

It is easy to see why the two "sides" are at loggerheads. The stakes are high.
Just recently the government has announced that from 2017, ESA for new disabled people in the WRAG is to be cut by a third, aligning it with JSA. Now do bear in mind that these are people who have been found "unfit for work". While some disabled people within this group may be ready to take on a job, it also includes people who are currently unable to return to work. A further 5000 are unable to work in the longer term yet not "disabled enough" to qualify for the support group. All these people will now be expected to live on subsistence level benefits for a prolonged period of time.
On the other hand the continual campaigning for welfare risks giving out the message that all disabled people are on benefits and cannot work, reinforcing employers' misplaced belief that we make poor prospective employees.

Many people have been making the point that the government is wrong about these reforms because it is treating "sick" people the same as "disabled" people.
I have several issues with this. 
Firstly, "sick" people whose symptoms (impairments) are severe enough to prevent them from working are, by definition, disabled.
Secondly it is very difficult to clearly separate sickness from disability. Some explain that chronic illness causes symptoms such as pain and fatigue which are difficult to manage. But this does not define a chronic illness and can be a feature of many so called "disabilities".
So what is really important?

The key point for me is whether, after all possible support has been put in place and reasonable adjustments have been made, the disabled person’s impairments impact on their ability to do their job.
The problem for many disabled people with chronic illness is that it does. But crucially this is not unique to chronic illness, although it may be more common.

The degree to which it does will affect whether or not it is feasible for someone to be financially independent, or at the very least how difficult or how much.

This is completely individual and not reliant on diagnosis. Furthermore, even given the same impairment, a person’s support network (friends and family), physical support, education and even geographic location can make a difference. 
For instance I was able to continue working for a much longer time because I was able to access the very flexible job of a university researcher (work from home, long term deadlines, well enough paid to go part time). This would be closed off to most people as most people do not have a PhD. There are also not very many of these jobs to go around and location here would likewise make a difference.
So it would have been completely wrong to hold me up as an example and think that everyone with similar impairments could have been working.

However all of this is hard to explain quickly. Thus, because it is so common that impairments arising from chronic illness will invariably impact on the ability to work regardless of reasonable adjustments, we tend to simplify by separating disabled people into "sick" and "healthy". I fear though that this is creating divisions and friction.

In reality everyone should be working towards the same goal which is appropriate support for every disabled individual, regardless of their impairments.
For some this may be temporary financial support while they recover enough to return to work.
For some this may be long term financial support as their impairments impact so much on their ability to work that they cannot reliably carry out work which is financially viable.
For others it will be long term in work support (such as Access to Work). 
For some there needs to be an increase in flexible working practises and what I might call "soft" reasonable adjustments (not just a ramp!) if they are to be able to work again.
For pretty much everyone tackling prejudice, be it with employers, education or the general public is a high priority.
Then there is a wide range of other issues such as accessible accommodation, social care, provision of living aids (including NHS wheelchairs), accessible transport, disability in healthcare and probably much else I'm forgetting.

At the moment much of this is going backwards rather than forwards, be it fears for independent living through social care cuts, the abolition of the ILF and cuts to DLA, reduction in support for work through changes to Access to Work and again, cuts to DLA, a possible reduction in future accessible accommodation through lessening of building regulations, and cuts to ESA.

Monday, 22 June 2015

Higher PIP percentages is NOT a good thing

The latest government spin machine is in action, trying to make us think that PIP is much better than DLA at supporting disabled people.
This seems hard to believe when we know that it was introduced with an original aim of reducing expenditure by 20% (pdf) and 500,000 fewer disabled people would be eligible for the new benefit. By January 2013 this was revised to 27% savings and a 28% decrease in the caseload (same pdf), ie 607,000 fewer eligible disabled people by May 2018.

So how is the government doing it without lying?

Well in response to this article which claims that at least 450 carers in Scotland will lose £3000 due to the change, the DWP says:
“The fact is a higher proportion of Personal Independence Payments claimants receive the highest rate, so entitling their carer to Carer’s Allowance, than the proportion of Disability Living Allowance claimants who do.”
Similarly, during the course of today's welfare debate, the DWP twitter account posted the following:
Wow! Sounds great! Why are we complaining?!

Well no. It isn't quite so great. This is for the most part a direct consequence of the fact that they have made the qualifying criteria much harsher and far fewer people will qualify. But they manage to make it sound like a good thing. I applaud their ingenuity!

For instance the number of people projected to receive the highest rates of PIP is pretty much unchanged by May 2018 compared to if we had retained DLA.
357,000 will receive the highest rates of PIP compared to 354,000 on DLA.
The reason the ratios are so different is that the total caseload is different and will drop dramatically under PIP.
Only an estimated 1,575,000 claimants will qualify for PIP whereas 2,182,000 would have qualified for DLA.
Hence the DWP's proud statement that under PIP 22% will receive the highest levels of support as opposed to 16% under DLA.
This is absolutely true. However the only reason it is, is that over 600,000 disabled people will have lost their benefit! This is hardly something to be pleased about!

Very clever spin. I take my hat off to you DWP...


P.S. The statement is also not true when it comes to mobility, almost certainly due to the harshness of the "20 metre rule". In fact not only does the total number of claimants go down significantly, but the proportion goes down slightly as well.

602,000 disabled people are expected to qualify for enhanced mobility under PIP.
A full 1,030,000 would have qualified for high rate mobility under DLA.
In this case, the statement that a higher proportion receive enhanced rate is false.
An estimated 48.7% of mobility claimants will receive the higher rate under PIP, compared to 52.6% under DLA.
It should also be noted that 21.6% of the total PIP caseload is ineligible for any mobility support whatsoever, as opposed to just 10.2% under DLA.







Tuesday, 2 June 2015

An Unfond Farewell to Disability Activism

Almost five years ago I had to give up the career that I loved. It was a devastating and life changing time. It provoked a period of deep depression for the first time in my life, something no other difficult event had succeeded in doing.

After recovering from this I observed that the government was threatening serious cuts to the very support which had enabled me to embark on my career in the first place. I hated the idea that current young disabled people would be denied the opportunities I had enjoyed and so I became more involved in disability activism. It gave me a sense of purpose and I felt I was doing something worthwhile which would help others.

This took off in a big way in January 2012 when I researched and wrote what became known as the Spartacus Report. While others helped and others were in charge of organising the superb campaign, I was the main author.
This report clearly showed for the first time, with the government's own data, that they were lying about both the need and disabled people's support for reform to DLA. This report was on the whole met with great support by disabled people, bringing many people together on social media. It was used to try to influence voting on the welfare reform act and eventually provoked much media interest after surprise government defeats in the House of Lords.

After a long period of recovery I continued campaigning on the issues I cared most about, ie the enabling benefits like DLA, DSA and social care. While I would have liked to campaign about everything my health no longer permitted it and my involvement has got less and less each year as my illness worsens.
I tried to prevent a cap on community social care being implemented in Worcestershire, was very involved in fighting the creation and evolution of PIP, particularly the 20 metre rule, and recently helped combat plans to water down DSA.
Among all this I helped and supported fellow disabled people and called out politicians whenever I caught them lying in the press, for instance about disability benefits being exempt from benefit uprating and freeze.

Today though all this comes to an abrupt end. I discover I am not wanted. Why? I am a "Sparty", and a "traitor".
Why again? Sue Marsh, who was the most prominent "member" of Spartacus decided in January to go and work for Maximus, the company taking over the controversial WCA "fit for work"assessments from the infamous ATOS.
Apparently this makes me a traitor too and makes all my previous work invalid, no matter that I have not worked with Sue for a couple of years (not that it should matter anyway).

How did I discover this? Just before the election, fed up of the infighting between disabled groups and people, I wrote a post calling for for union. Some decided to do just that and create a "union" or similar organisation. I eagerly wanted to help, health permitting, along with others who had been involved with various reports for Spartacus in the past.
Sadly things rapidly descended into conspiracy theories, with "Sparties" supposedly trying to take over and get their "leader" (huh?!) in power. Long discussions were also had over which disabled people should NOT be allowed to join. So much for unity.

What was said was nasty.
I no longer feel welcome and don't think I ever will again.
I fail to understand how anyone can have an issue with the work I have done (other than fundamental differences of opinion).
I fail to understand how work which was hailed as good at the time becomes bad simply because someone I worked with 3 years ago has done something they disapprove of.
I fail to understand how that makes me guilty and unwelcome.

I have been attacked in the past before. Ironically it has been on the one hand for not doing more about ESA and the WCA and on the other for not caring about inclusion, when in fact most of my campaigning surrounds "enabling" support.
People have always jumped to conclusions and made assumptions.
So maybe I shouldn't be surprised.
Disability activism has always been made harder by "fellow" disabled people than by the people we are supposed to be "fighting".

So now I am stopping. I don't have the physical strength to put up with this.
I feel like I did when I lost my career all over again.
I thought I had found something which helped replace that but it has been snatched away from me. I didn't think I would feel this bad ever again.
And the sad thing is that some people reading this are probably rejoicing.
How will we ever unite when this is the case? I wish all you disability campaigners luck but I don't hold out much hope.

Sunday, 10 May 2015

A union (or whatever) of disabled people?


Guest post by Sam Barnett-Cormack @narco_sam

Given the results of this general election, it’s more clear than ever that we need to make use of every tool outside of Parliament to stand up for ourselves. To stand up for our rights, our participation, our safety and our sanity.

It’s my feeling that a new national organisation, formally constituted and mebership-based, would be a strong way to ensure the voice of disabled people in politics, in civil society, and in the media. I have nothing against DPAC and Black Triangle, and I hope their work continues. Indeed, the organisation I envisage would hopefully work with them, along with all sorts of DPULOs, and anyone else that it makes sense to work with. The organisation I envisage would be dedicated to constructive policy work and campaigning in all areas, not just political. Inaccessible town centres, healthcare inequality, disabled people’s sports – raising the profile of all these, and more, and saying how we, disabled people, want things fixed – and having the data and policy work to back it up. And yes, that includes working to protect the social security that so many disabled people rely on, but also so much more.

We don’t have to call it a union – it wouldn’t exactly be part of the trades union movement, but I see it working in a similar way. A national executive, policy votes, meetings and similar. Of course, meetings can never be terribly accessible for many disabled people, so we’d do more absentee voting at meetings, and more things by referenda. But we would have a solidly defined constitution, and membership. So it could be called ‘union’, or ‘association’, or ‘fellowship’ – there’s arguments for and against a lot of language options. What’s important is that we do it.

I truly believe that, done right, such an organisation can carry the confidence and embody the unity of disabled people. We won’t all agree on policies, there will be internal politics, but we can see how many organisations out there make this work. We agree to follow our collective will in essentials, even while being free to disagree publicly. Not every disabled person would support it, but if we do it right, enough will. A credible, mature and accountable voice for disabled people on the national stage – with accountability, making it easy for everyone to participate, and allowing for differences of opinion without fragmenting.

I don’t have all the detail worked out, but here’s my thoughts so far. Two-stream membership, with different voting rights – self-identified disabled people as full members, and carers and allies as associate members. Our carers and allies are vital, and they must have a voice, especially carers, but the organisation must be led by disabled people ourselves. A constitution that embeds concern for intersectionality, that we will not discriminate against disabled people on the basis of other characteristics – be it race, sex, education, economic status, national origin (or even nationality), whatever. Not party-political, but admonishing all political parties (and politicians) equally, as merited. Praising that which is good and castigating that which is bad. Caring as much about supporting each other as about making noise and seeking change – providing advice and advocacy would be an excellent thing to incorporate.

Yes, an organisation doing this is going to need money. I don’t envisage employed staff any time soon, though if it takes off that’s a possibility. But organisation generally costs money, like room hire, renting a PO box, printing, and even legal advice. Some of that might come from contributions in kind, and we can always hope for a few big donors, but membership will probably need to cost money. I don’t know how much. Perhaps charge associate members more than full members, partly due to the fact that disabled people are more likely to be in poverty, and partly because that demonstrates our allies’ commitment to us as disabled people. Of course, concessional rates would be needed – carers are scarcely in a better position than disabled people, certainly. I’d love to sit down with some other people who are prepared to get this off the ground and sort out these initial details. Heck, I’m happy if other people run with the idea and I just end up a member, but I’m willing to do work to start it – I just can’t do it all.

There’s so much more that I could say: how we can directly address businesses and other organisations, not just politicians; how we can facilitate a structure of affiliate organisations to allow for local branches; how a clear forum that we have ownership of will allow us to be open about our fears and our hopes and, yes, our differences.

Let’s do this thing.

Friday, 1 May 2015

A Call to Union

Post written for  Blogging Against Disablism Day 2015, #BADD2015



"Scroungers, cuts, unfair tests", how dare anyone treat us thus, people cry.
"Incapable, unfit, inferior", this is how you make us look, others despair.
"Pain, misery, poverty", why do you refuse to see?, more shout.
"Welfarists, pity seeking, anti inclusion", this is what you have become, some accuse.

"A few" becomes "most".  
"Most" becomes "all".        
Miscommunication, anger, fear. 
Won't anyone stop to listen? 

Fragmented, upset, distrustful,    
We will not have a voice until we do.
Until then "They" laugh and carry on.  
And harm is done to all.



For BADD 2013 I talked about the difficulties we, as disabled people, faced in simultaneously pursuing two goals to fight disablism.
The first was challenging the perception that disabled people are by definition incapable of working, particularly at the highest levels.
The second was challenging the "if you can type you can work" type argument. This meant ensuring that the general public understand that it is possible to be unable to do sustaining paid work and that appropriate support must be in place without social condemnation.

I am sorry to say that we have failed miserably, with unspoken disagreements over which goal to follow and crucially, how to go about it, causing rifts and friction.

What I see around me today are disparate disability "groups" often at odds with one another, unfounded accusations flying back and forth, and increasing stereotyping and disablism, all coming ironically from disabled people ourselves.
Here are just some of the types of things I have heard repeatedly from many different sources.
  • "Disabled people with chronic illnesses feel sorry for themselves and don't want to work"
  • "Disabled people who work look down on those who don't and don't understand what it is like"
  • "All disabled people could work if they really wanted to"
  • "Disabled people with chronic/mental health illnesses who work/go back to work can't have been that sick to start with"
  • "Disabled people with visible impairments have it easy (insert uninformed rant)"
  • "Disabled people with invisible impairments have it easy (insert uninformed rant)"
  • "Disabled people who campaign about welfare have never worked on or know anything about any other issue, and are against true inclusion"
  • "Disabled people who don't directly campaign about welfare issues don't care"
  • "Person A campaigned about Issue B, therefore they think "this" about Issue C!" (argument ensues)
(Those of you thinking "but it's true" at this stage might want to reconsider the earlier lines "a few becomes most, most becomes all" and apply the result in reverse to the above statements.)

This sort of labelling, insults and assumptions would be pounced on and defended against if coming from an outside source. So why are we allowing this to happen?
What is this if not disablism of the very kind we strive so hard to eliminate?

And so, I call for people to pause. To communicate. To try to understand each other's concerns and goals. Most importantly, to unite.
Until we do, we cannot create strong messages and policies which leave no one out, which both enable and support every one of us, whatever our impairments or current situation.

Unless we achieve this, in every sphere of life, be it education, welfare, employment, social care, health, family and social life, access and transport, many new policies will be unfair, unsupportive or even intrinsically disablist.

As a new government is about to be formed, there has never been a better time to get our act together and make our impact felt over the course of the next 5 years.




Post written for  Blogging Against Disablism Day 2015, #BADD2015

Sunday, 19 April 2015

I'll be back!

Wow. Well this year has been rubbish!

I've been offline for most of it so far, barely making contact with anyone either on Twitter or Facebook. As anyone who is mostly housebound and who relies on social media for a lot of their day to day social interactions knows, that is not a good sign!

Unfortunately I've been very ill this year and unable pretty much to do anything. January wasn't great but everything went pear shaped from the start of February. I'm only just starting to recover (went outside last week!), although there are still extra issues compared to normal.

I am slowly starting to use Facebook and Twitter again and at some point I hope to be well enough to write a proper blog post. I miss writing, however infrequently I can manage it.

I'll be back!
Until then, bye, and back to my duvet...

Monday, 12 January 2015

Going back to work from the Support Group

It is by now pretty common knowledge that Sue Marsh has accepted a full time position as "Head of Customer Experience" with Maximus, the company of controversial reputation taking over the WCA from the infamous ATOS.

There has been a lot of understandable anger to this, with many people left feeling abandoned and betrayed. I cannot say I have welcomed the news as I feel we have lost a valuable campaigner and question how much change will be able to be made from within a company which merely implements DWP policy.

However I have been slightly surprised at the backlash at her taking on a job at all. I do understand that there is always the fear that seeing one person successfully returning to work may lead a misinformed public to say that "everyone can do it", or that such a person shouldn't have been on benefits in the first place, but I feel that we ourselves should know better.

The Support Group is a strange beast. Generally we say that it is for those "too sick to work". But this is incorrect. It certainly includes those people but it is far more complex than that and for many it is not so black and white.

On the one hand some people automatically qualify on the basis of some straightforward criteria. These criteria, I might add, are not always ones which mean you cannot work.

For instance one of them I know well since it applies to myself, is that you are unable to walk or propel yourself in a wheelchair for 50m. So in other words pretty much any electric wheelchair user automatically gets into the support group.
While it is tremendously difficult to find a job as an electric wheelchair user, due both to transport issues, access difficulties and employer prejudice, it is not impossible. Disabled people in this position should be strongly supported and encouraged if there are no other aggravating factors preventing them from working. Such people would quite legally go straight from Support Group to full time work.

Other people are in the support group for much less straightforward reasons and may have symptoms which will directly impact on their work. Where the electric wheelchair user may be able to find a job where their impairment is not an issue, for some people this is never going to be possible. Their impairment will affect everything they do.
This group includes many people with chronic illnesses, people with symptoms such as pain and fatigue (not exclusive to illness), mental health illnesses, learning disabilities, and impairments such as speech, hearing or visual impairments.

Among these people I believe we have a further two groups.
First there are those who would be able to work if the perfect job came along with all the right tailor made adjustments. Even then, given that they are in the support group, it is highly likely that even this perfect job would take a toll on their health in some way. This should therefore be a choice and not an obligation.
Then there are those who would not be able to work even if every possible adjustment was made and/or only a few hours a week were required.
EDIT: For an example of the sort of toll even the "perfect" job can take, please read this excellent but hard hitting piece on the blog Benefit Scrounging Scum. @Bendygirl, who recently went back to work, highlights the dilemma between her desire to work, her rapidly deteriorating health, and the need to look after her health. Work, contrary to government policy, is not always good for you.


I was someone who for 5 years had one such "perfect" job in academia as a researcher. I worked on results not hours per week. I could work from home as much as I wanted, and I could work lying down in bed. It didn't matter that I regularly had to unpredictably have a lot of time off or spend time in hospital. I often even worked there.
Later on when I got even sicker, I was able to go part time and it was well enough paid for me to do so.
This job did take its toll physically. It increased pain levels and did make my health quite a lot worse. I chose to do it because I enjoyed it so much and I felt that the emotional and mental boost it gave me was worth the physical downside.

Had I not been "lucky" enough to get it, I would have been in the Support Group of ESA. Vice versa, had I been in the Support Group of ESA at that time and been offered it, I would have quite legally gone straight from Support Group into employment, even though I was very sick and disabled.

However although I am indeed now in the Support Group of ESA, I am now much sicker than I was then. Even if that "perfect" job came up again tomorrow, I would not be able to take it, not at any price.

I think this illustrates quite nicely how different people in the Support Group can be at very different distances from employment depending on how their impairment affects them.
Some could take a job given a non prejudiced supportive employer, an accessible workplace and an Access to Work system fit for purpose.
Some could take that ultra-rare "perfect" job that somehow fits around their impairment and would choose to put up with the downturn in their symptoms.
Some couldn't take any job under any circumstances.

Nearly all would like to work if it were possible...