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...