Thursday, May 12, 2011

'The language of shirkers and scroungers?' Talking about illness, disability and coalition welfare reform - Disability & Society

Picture: protesters at today's 'Hardest Hit' march, carrying a sign which is partly written in Braille. It reads "We're being ---- by the government." Someone has written a translation of the Braille word below it: "shafted". Photo copyright Lisa Egan.

Yesterday's discussion on the BBC's You and Yours was about disability, cuts and welfare reform, and featured Where's the Benefit's own Bendy Girl. Some contributors' comments offered a clear example of how attitudes to disability haven't really changed much since Victorian times - if not before. Some academic research recently published has been talking about how these attitudes might relate to the way that the government and the media are representing disability at the moment. Academic journal articles are expensive if you're not at a university, but I think research around disability and society is vitally important, and this article's conclusions are a late-but-appreciated part of academic debate - so this is a bit of a summary of the article.

As a (new, but enthusiastic) researcher in disability studies, I get very frustrated about the split between theory/research and disability activism. It's not just disability - feminism has this theory-activism split too, and I'm sure other equality campaigns do as well. And certain academics have always argued for a closer relationship between theory and activism. But disability studies emerged out of the disability rights movement - the two were once very closely linked. Right now, when disabled people in the UK are engaged in a major struggle to maintain their independence in the face of cuts and attacks, it would be useful to have more theory and research supporting the disability rights movement.

So the current relevance of this article makes me happy, although it's full of very worrying conclusions. 'Disability and Society' is an academic journal, but it has always been good at getting contributions from people who know what they're talking about, when it comes to practical disability issues. This is a short piece of research on the way that the government and the media represents disability, as part of the coalition's 'welfare reform' programme.

Despite the slightly misleading abstract, which seems to focus only on the coalition government, the article begins by putting welfare reform into a longer-term context. Garthwaite, the writer, acknowledges that these 'reforms' began with the Labour government, well before the current financial recession. The coalition government then continued to focus on the cost of benefits, attempting a major restructuring of the system - largely without piloting or consultation with disabled people. The research then shows the contractions in the language and representation of disability used to shore up this restructuring. Despite Chris Grayling's promise not to use "the language of shirkers and scroungers" (p.370), the government has used inference and association to suggest that many benefit claimants are workshy, without supporting this with facts or statistics. It has also gone further, with such terms as "dependency" and "unwilling" (p.370). Garthwaite compares this with language of the media towards disability benefits, which is often much stronger, with references to "cheats," "idleness" and "scroungers." The media regularly use metaphors of war, suggesting the need to 'win' a battle for "fairness" (p.371) - which encourages readers to 'take sides' in this battle. It seems that the government and the media are using very similar language about disability benefits and their claimants - the only differences are the extent of this use of negative language, and the strength of tone used. Garthwaite summarises this as a representation that questions the "integrity of the sick" (p.371), and argues that this goes against the principles of the UK's welfare state.

Garthwaite has particular concerns about policies around the new Employment Support Allowance, which is replacing Incapacity Benefit for people who are unable to work because of long-term health problems. The system individualises the issue of work and disability. Instead of focusing on inequalities in the way that work and the economy are structured, it focuses on individual 'responsibility' and 'economic (in)activity'. This is a medical model approach to disability, rather than a social model approach. It could also be very divisive for disabled people, since it places people into either a 'support' or a 'work-focused' group, with different rights and responsibilities in each. Garthwaite worries that this will affect public opinion about which conditions are 'deserving' or 'undeserving' of support (p.371). This, too, involves medicalising people, rather than dealing with social inequalities.

I'm very interested in what the article has to say about ideas of who 'deserves' welfare. Garthwaite argues that there's nothing particularly new about these attacks on disabled benefit claimants, and she identifies similar headlines from the 1980s and 1990s. The roots of the debate go back much further than that, though, she says - the split between representations of 'deserving poor' and 'undeserving poor' was strengthened in the Victorian era (although in fact the English poor laws go back to the sixteenth century and before). When I do my rant on twitter about how the government is taking us back to Victorian times, this is part of what I mean. By the nineteenth century, there was such social concern about idleness that "able-bodied" poor people were condemned to workhouses. This meant there had to be distinctions between 'deserving' and 'undeserving' poor that were, of course, ideologically motivated. The poor laws weren't just about workhouses, though. They left people who couldn't work either at the mercy of local parishes, which administered a system of charity, or in the care of (unsupported) family members. Later, long-stay hospitals became the main way that charitable care for disabled people was delivered. People lived and died in institutions. Disabled people have won a lot of battles since then, not least the entitlement to live independently in the community. Benefits and social care packages, those things society thinks it can't afford anymore, are a major part of that entitlement. Without them, we will probably see the widespread return of long-stay hospitals (nowadays they're called 'care homes'). A modern version of the workhouses is a possibility too (today the government talks about 'workfare').

Colin Barnes often says that if research isn't useful to disabled people, then what is disability studies for at all? Good research could be very useful to the disability rights movement at the moment - especially when facts are in short supply. Garthwaite ends her article by calling for the stories of people on disability benefits to be listened to, so that negative government and media representations of disabled people can be challenged by the realities of our lives. This is just one way that a disability movement supported by good research would be more empowered to stand up to divisive, oppressive government and media ideologies. I'd like to see more useful research like this, with more researchers really asking disabled people what research they would find useful at the moment, and allowing disabled people to have full control of that research - rather than just claiming that's what they do.

Have you seen other academic research on welfare reform?

Cross-posted to my academic blog.

Wednesday, May 04, 2011

Bill on abstinence-focused sex education, for girls only, passes first reading in the Commons - The F Word

See Liberal Conspiracy for more on this.

I’m with these groups’ bloggers when they say that we have to unite to fight this. I think this means NOW. We cannot let a victim-blaming, misogynistic law affect the way young women are educated and socialised - especially in a society where the rape conviction rate remains horrifically low and one in four women experiences domestic violence.

Dorries’ use of the rhetoric of sexualisation of society is particularly insidious here. Many feminists, myself included, agree that this is a growing problem. What we don’t do is shift the responsibility for this onto women. Society always moves first to change women, rather than men - and when this is victim-blaming, it’s particularly worrying. Dorries is serving the patriarchy by drawing on feminist language and themes. It’s terrifying. Disabled people know how nasty Dorries’ attacks on specific social groups can be. She needs, quite frankly, to be stopped.

Feminist bloggers, are your groups thinking of doing something about this? I’m lacking a local group, but I do some work with UK Feminista. I’m hoping we’ll get to address this, and Dorries’ related anti-abortion campaign, at the Summer School. I need to get involved in a group, but it’s tricky when you’re not in either London or a large university. Hmm.

Thoughts, anyone?

(Daily Blogging Attempt Month, Day 4. Cross posted to my tumblr blog.)

Friday, February 25, 2011


Welcome, one and all, to February's Disability Blog Carnival - the 74th, if you're counting. I asked you to Participate, and you did. While 'Participation' is perhaps not the most exciting of themes, a great set of writers have interpreted it in all kinds of ways. Here, in no particular order, are their fantastic posts.

Our first post comes from In my eyes my life with cerebral palsy (a blog whose strapline I adore), about going for what you want in life. A childhood example shows the impact of getting involved:

"When I was a kid the local wheelchair basketball team had an activity day, I attended and loved it so much that I begged my occupational therapist to go again so much that I managed at the ripe old age of five to convince them to lower the program age range from eight to five."

Having that kind of impact can involve some serious work, though. When social and physical barriers are everywhere for disabled people, participating in the most ordinary of activities can be frustratingly difficult and thoroughly depressing. This month, Wheelchair Dancer related an experience of back-door access, poor service and relegation to second-class-citizenship. I was impressed by her tenacity in complaining. More of us could participate if more of us stood up for our own rights.

"There's not much anyone can do. They rent the space; they don't have the rights to put in an elevator. She says that she will think about how to make the space more of a par with the upstairs space in terms of decoration (did she honestly think that people with disabilities would be so grateful to get in the door that we'd be happy with the hallway?)"

Staying with these themes of society and expectations, The Right To Design has a thought-provoking post this month about prosthetic limbs. Are they more about society's need to normalize disabled people than about function? In short, do we need to 'look right' before our participation in society will be more acceptable? And what are the reactions when we refuse to fit in like this?

"Is it that people are more comfortable with plastic and metal - even though they clearly indicate a lost limb - than the actual flesh of an impaired body? Or that they want to see that the person is at least trying to repair/replace their disability - to make themselves more "normal"? Does the strangeness of a prosthetic limb somehow trump the taboos around physical difference or disability?"

Meanwhile, Carl tells us that participation can be boring when you're ordinary, while Teafeather continues with the theme of ordinary things by talking about participation in online forums. After all, as Carl points out, despite the supercrip stories the media likes to revel in, most of us are indeed ordinary:

"Many people mistakenly perceive my participation in everyday activities to be something out of the ordinary, when really, there isn't all that much people my age participate in other than going to university, drinking beer and starting work."

Diary of a Benefit Scrounger has contributed a beautiful prose poem, which captures the complexity and ambiguity of participation in a society that cuts benefits and demonises disabled people. I love the spirit of defiance that shines through it:

"One warm, summer afternoon, when the breeze feels like silk, I will take a motorbike ride with my husband, racing through hazel lined lanes across the rolling South Downs. I will gulp in pleasure and live a year in those few, adrenaline-fuelled hours. I will pull off my crash helmet, shaking my hair and laughing at life. I wonder if you'll remember how little my life normally gives me to laugh at?"

Thinking about a similar kind of paradox, Astrid is concerned about the double-bind of participation in society for disabled people:

"Disabilities create barriers to participation, yet as people with disabilities, we’re forced to participate in the non-disabled community as much as we possibly can... We shouldn't have to prove how oh so capable we are in order to be valuable members of society."

In societies where access and equality are very limited, campaigners have to work even harder towards equal participation for all. The editor of Women's Web, which is based in India, has contributed this interview with a mother of a child who has autism. She lives in Bangalore and campaigns for access to play spaces. And her campaign group is making a difference:

"5 years on, Kilikili’s achievements are many: 3 inclusive public parks, many partnerships with parents’ other organizations to transfer the knowledge gained, ‘inclusion events’ for children with disabilities to meet and interact with others and a ‘Buddies’ programme specifically for children with autism and developmental delays."

Elizabeth McClung and Cheryl have been thinking about participation in communities of disabled people, but in rather different ways. Elizabeth considers how disabled people are quite capable of excluding (other disabled) people from our communities. Cheryl, an ADAPT activist, begins by thinking about ways in which ADAPT is like a youth club where she feels like she belongs completely, and goes on to think about how she could engage other young people in the same kind of activism:

"I want to work for a CIL and teach 15 year olds about public policy. Get them pumped up, take them to the fun run, get them more pumped up, and then send them home to keep them away from the arrests. Although hill visits would be cool too. A 15 year old shaking Tom Harkin's hand, priceless."

Spaz Girl tells me she thinks her Able Privilege Checklist is off-topic, but it's full of gems about how easily non-disabled people take their access for granted, echoing many of this month's posts. My personal favourite from her list:

"You can go out in public and will not be accosted by a variety of tired, cheap car jokes such as 'Do you have a license for that thing?'"

I want to end with Sharon Waschler's excellent post over at After Gadget, which returns to the ambiguities and complications of participation in life - and activism, and many other things - when you're disabled. A lot of us will be able to identify with her difficult story of making a supreme, costly effort to stand up for disability rights, only to meet with a defensive reaction, or worse. But her reaction of "If not me, who?" is a reminder, for me, of why it's important to keep campaigning even when it's incredibly hard work:

"When you are silent in the face of oppressive language and behaviors, you participate in the oppression of all people. Yes, there is self-preservation and picking your battles, and there are also moral imperatives."

Happy 74th Disability Blog Carnival, all. I hope I haven't missed off anyone's entries, but it's been that kind of a week, so let me know if I have! See you at the next Blog Carnival - ETA: this will be over at A Writer in a Wheelchair on 25th March, and the topic is 'Milestones'. You can leave links to your entries in the comments there, or e-mail Emma at ejcrees 'at' googlemail 'dot' com. Enjoy.

"We all participate in weaving the social fabric; we should therefore all participate in patching the fabric when it develops holes." ~ Anne Weisberg

Sunday, January 30, 2011

I'll be hosting February's Disability Blog Carnival on the 25th. If you don't know what the Disability Blog Carnival is all about, you can see some examples of past editions here, here and here. It's a round-up and celebration of the best of the month's disability blogging, grouped around a theme. This month's (optional) theme is Participation. What do you participate in, and how? Whether you take the theme to refer to hobbies, fun activities, or just the smaller things in life that are still important to us, I think talking about our participation in life and society is increasingly important in this world of cuts and limitations. In a society where we're regularly accused of wasting the 'taxpayer's' money, let's celebrate the fact that we do frivolous things! To give you an idea, the topic was inspired by a suggestion by Lisy Babe, with whom I share an interest in cult TV, that people might want to write about participation in fandom.

It would be great if you could get your blog posts to me by 20th Feb, to give me time to work on the round-up post - I'm a slow blogger! If you have a last-minute burst of inspiration, though, I'll do my best to fit it in later. Either link to your entry in a comment on this post, or e-mail me with the link at lilwatchergirl (at) gmail (dot) com.

Enjoy participating in the month's blog carnival!

Monday, January 17, 2011

...And Sometimes Things Work Like They Should

It's only a little victory, but in the midst of all the struggle for services, I am happy this morning. Disabled Students' Allowance has paid for a second desk in my study (my own desk has a bad setup that hurts my neck and subluxes my shoulders) and a stand so that I can use my laptop/read in bed. They came to set the equipment up today. Compared to other battles to get what I need and am entitled to, this has been relatively easy to arrange. And it will make such a difference to the amount of work I can do. Being able to work properly in bed will be so exciting.

The fight with Access to Work continues, but incredibly, I might actually be getting there with them. They've moved on from the fifteen pages or so of details I had to write about my needs, and are now asking actually relevant things. I'll be unbelievably relieved if I win this one. The thought of not getting support and therefore never being able to teach again was utterly, appallingly terrifying.

New anti-depressant medication is starting to work. This is also a relief. I hope it continues to do so.

Saturday, January 08, 2011

Adventures in Disability, Again

I'm seriously neglecting blogging at the moment (on both my blogs, and indeed at Where's the Benefit). But life is currently quite a struggle, and I thought writing might help a bit. So here is a new, if brief post.

When they say disability is a full-time job, they're really not kidding. Yesterday, which was supposed to be a work-from-home day for me, involved three awful encounters with professionals (two on the phone, via The Girl) that left me so exhausted and close to having a complete breakdown that, of course, no work got done.

I won't go into the ins and outs of the personal budget I'm hoping to get from social services which, while intended to meet my care needs, is very unlikely to do so, because of the ubiquitous 'computer says no' situation in which I and my needs are far too complicated for anyone official to begin to grasp. So let's just say that my morning was taken up with frustrating social workers and their departments' frustrating policies. It was the afternoon's (first) phone call that was really distressing, though.

For the past few years I've received lots of support from Access to Work, a government organisation that supports disabled people in work. They, like everyone else, are cutting back severely on their eligibility criteria. This means that, although I officially qualify for support as before, their support is now only given if my employer can't meet my (expensive) disability access needs as a 'reasonable adjustment'. This doesn't sound unreasonable, until you realise what this means in practice. I have a part-time lecturing a job this semester. I need a support worker in the classroom. I can't get up to write on the board. I can't get around the classroom, which will affect how I teach. I can't give out materials. I may need someone to read some of my lecture notes if I get tired. I can't operate the classroom computer or projector, because of accessibility issues. I can't bring materials into the classroom. And that's just the potential access problems I can think of right now. None of this affects my ability to lecture (I'm a good, experienced teacher), but it does involve access issues so complex that I *need* someone with me in the classroom to do the various practical things that I used to do, when I could leap around the classroom with boundless energy. Access to Work, however, are - get this - telling me to make a student, unpaid, do all this work. This would be unprofessional, unethical, educationally questionable, exploitative and downright unfair. But they see this as a 'reasonable adjustment' on the part of my employers. They don't care, of course, that if they don't provide this support worker I will have to give up this job, which will probably be the end of my just-splutting-back-into-life career.

So another fucking battle to get my needs met starts. I seem to have about one of these a month, at least. I'm currently also struggling with my university's disability support people, because of whose incompetence I've had to restart my PhD this month, and who cannot get their act together regarding my academic support workers (paid for from a student disability support fund, which is also very limited). Add in my battle with social services, and I think I'm having a revisit from my old friends, bipolar disorder complicated by neurodiversity. I have to go to the doctor and talk about changing my antidepressants ASAP. But of course, if I go to them and say "I'm drowning in disability administration that would make the most mentally healthy people feel depressed," they'll look at me completely blankly. This stress will be put down to my weaknesses, not society's attempts to make life so difficult for disabled people that we just kill ourselves so that we don't cost the government anything anymore. Ooh, and I'd better not say that to the doctor, or I'll be accused of severe paranoia. You know, I increasingly question how much of my mental health stuff is down to my brain being wacky, and how much is down to the effects of trying to live in a society that has no place for me and would much prefer I wasn't here. A social model of mental health? To some extent, I think that applies.

Right, that's all my self-pity got out. My Girl is asleep next to me with a migraine, poor thing, so I don't know if we're doing the sales today as we had planned. I hope so, 'cause I need a serious distraction.

Tuesday, September 28, 2010

I register for a PhD on Friday.

Would you like some terror with that order of academia?

My house is still really quite inaccessible (as of today there are no longer big holes in the floor, but I keep tripping over the random boxes of crap that are absolutely everywhere, and we don't have many places to sit down yet). I interview for new PAs (aka carers) on Thursday, and so far only have about four potential candidates (for two posts). We are massively lacking on the furniture front. Oh, and The Girl goes away on Friday, for at least a couple of weeks. In the midst of all this chaos, I'm going to be pretending to be a research student.

Well aware that I have entirely neglected this blog over the past year, I shall endeavour to do better (while also trying to remember to update the equally-ignored research blog). I bloody need to. The disorganisation in my house is reflective of total anarchy in my head, and I have no idea where to start with that. I'm picking a hell of a time to start playing the consummate professional again. Wish me luck.