Through Myself and Back Again

This Post Brought To You Courtesy of Pinot Grigio

2009-11-12T20:19:00.004Z

...which will explain any spelling mistakes, 'k?

I have NO RESULTS. I have spent six effing months on research for a dissertation, and because of the physiotherapy teaching establishment's idiocy, obstinacy, protected privilege, and unwillingness to engage with disabled people and disability researchers, I have no results.

My very sweet tutor says it's all going to be OK, and that I have other things to talk about, including sociologically significant reasons for having no results. But I can't avoid the sinking feeling that says I'm going to get a 65 on this dissertation and miss out on my distinction (for which I need at least a 68), and not be able to get funding for a PhD, and generally end up with no sodding idea what I'm going to do with my life next.

Over on my lovely fandom posting board, we are talking etymology, words that offend everyone from feminists to disabled people, reclaiming terminology when you're in a minority group, and all that good stuff. Awesome. I love how disability-aware a lot of them are, on that random posting board that has nothing to do with disability at all. It gives me hope.

Hope: something this blog is sometimes lacking. Let us celebrate. More Pinot Grigio!

Customer Service

2009-11-11T22:42:00.007Z

See that pot? That's not a pot of tea. That, m'dears, is what you get in Richoux - the world's snobbiest cafe - when you order a pot of coffee. The Girl paid several £s for that pot. She was expecting a cafetiere. She was, to say the least, not impressed. As you might be able to tell from the picture.

Talking of cafes, I've been trying to find out why the brand new Costa on Chalk Farm Road has a sodding enormous step at the entrance. This is a blatant breach of the DDA. (The Costa customer service department responded to my e-mail asking which branch I'm talking about, when I had given the exact address - which rather demonstrates how stupid they are.) It's one thing when a small, independent shop can't afford to ramp its entrance. It's quite another when a massive multi-national, with six branches in every town, refits a brand new cafe and builds a new step entirely from scratch. Wankers. If they have no answer to my complaint, I might ask Camden Council exactly why they keep giving planning permission to shops and cafes that stomp all over actual and/or potential disabled customers in their blatant disregard for the law.

This has been the Rant of the Day. You may now return to your regularly scheduled programming.

Day Ten - in which I cross-post from elsewhere, due to tiredness

2009-11-10T21:50:00.004Z

Today mostly involved doctor crap. Which I don't feel like analysing today. Maybe tomorrow.

We're going with 'Susan' for the walker's name. We realised it covers three fandoms - with Ivanova, Sto-Helit and Pevensie. I look forward to giving a different answer every time someone asks why.

Today in my evening class, we were taught about feminism - very badly. I tried not to laugh or correct the teacher. I should have realised that taking a sociology class, even if not in my area of expertise, was inevitably going to involve occasional sniggering behind my laptop. I'd get angry, only I just don't care enough about the class, occasional fun though it is. (I do wish its essay deadline wasn't the day after my dissertation deadline, though. Guess which one will get prioritised? Clue: one of them will get me an MA and one won't...)

Day Nine - Short Memory

2009-11-09T22:27:00.005Z

Between exhaustion from having spent hours on my dissertation today, and The Girl arriving at Heathrow earlier than anticipated, I forgot to post.

It's a good thing NaBloPoMo doesn't specify either post length or, well, quality.

Better stuff tomorrow, I promise...

Day Eight - Scraping The Barrel

2009-11-08T19:33:00.010Z

Today I went to church. Before leaving the house, I noted (via twitter) that I was hoping to avoid too many comments about the new mobility aid, and offering advice to discerning readers that the way forward is not to say too much about such things.

Suffice it to say that with the number, weight and intensity of comments, you'd have been forgiven for thinking I'd walked in with a new baby.

(Although that would have been a lot less supportive for my knees.)

Have been discussing names for aforementioned walker on fandom forums. Continuing the sci-fi/fantasy theme (following Marvin the powerchair and Luna the manual), and given that the walker is geeky and a bit strange*, I'm thinking along the lines of Random or Susan. Messageboard posters are currently favouring Velma, but I am not a Scooby Doo fan so that's not happening.

I would say again that this wasn't the best month to choose to post every day, but I think you're getting the idea.

*You find these things out about mobility aids quite quickly.

Day Seven - Photoblog

2009-11-07T21:46:00.005Z

The scene not far from my road which I encountered on returning from Camden this morning. I'd been working in a cafe for a couple of hours. Heading back home, I found the road blocked off in all directions, including the dropped kerbs, with no temporary ramps and no warning signs.

The workmen acted like I was entirely bonkers for suggesting that they might have wanted to make their roadworks accessible to disabled pedestrians. "But we're only going to be here for an hour or so."

Then one of the workmen instead on 'helping' me up and down the inaccessible kerbs, mainly by repeating "Keep going... keep going... keep going..." about six times. Because I can't push my wheelchair without such verbal encouragement, obviously.

FAIL, Camden Council.

Not that we expect any better than that from you, really.

Day Six

2009-11-06T20:37:00.004Z

This post-a-day thing is quite hard work when you're spending up to 12 hours a day doing discourse analysis and editing research designs. Which reeeeeally don't make for interesting blog discussion material.

On the slightly more exciting side of things, I have a walker. This is not because I have given in to society's obsession with staying upright - Mike Oliver sums up how I feel about that, in his fantastic piece What's So Wonderful About Walking? But I'm just not that great at life in a wheelchair. I tip over. I fall out. I have to get out of the chair to do kerbs. I need powered wheels to get up hills. I'm in massive pain in my shoulders after a day of self-propelling (even with the aforementioned powered wheels). I can access nothing, because it hurts to lift the chair up steps (mainly because I need the aforementioned powered wheels, but not entirely). I tip over again. I fall out again. Yes, it's partly because I've only been using it about three years, but it's also because I'm dyspraxic, have crappy useless muscles thanks to FMS, and am generally a bit rubbish. I don't intend to stop using my wheelchair, by any means, but I like having a choice of mobility aids. One day, when I am very rich, I will have a garage full of them. I'm well on the way - I'm already getting on for a hallway full.

And that's the last time I *ever* give that explanation, because I don't have to explain my mobility-aid choices, and I'm tired of feeling like I do. Hurrah for self-determination and confidence in myself! (I give it a week.)

Anyway, I went for a (very) little walk in the rain. Which was probably rather dangerous, now that I think about it. But it was much fun, and I made it to the little cafe that's nearby, and had a cuppa before going home again.

Must go - Hamish the Little Girl Dwarf Hamster is running around very loudly in her mouse-sized wheel, and I'm taking every opportunity I can to persuade her that I am a non-scary person whose hand she can sit in. She hasn't yet decided whether I am Friend. She's been living with me for about three weeks. She'd better figure it out soon.

NaBloPoMo Day Five - Guy Fawkes' Night. Celebrating Stupid People.

2009-11-05T18:23:00.009Z

Should I be forced to use a wheelchair, all the time, even when I'd prefer to use crutches, simply because people are too lazy to try to understand invisible (or less-visible) impairment?

Or is it the responsibility of service providers (of all kinds) to make services accessible to an entire disabled community, whether or not I'm there to provide them with a reminder that some people are disabled?

And what do I do with people who are basically too stupid, or at least too focused on other things, to understand - without a constant visual reminder? Do I give in to the section of society that needs me to use a wheelchair all the time - or is that a betrayal of people with invisible and less-visible impairments, who also need to be represented?

Nothing To Say

2009-11-04T22:24:00.002Z

I have no interesting thoughts to express this evening.

Mainly because I have been talking theology in the pub with church friends. "Beer," my friend tells me, "is proof that God loves us." But we did also discuss real theology. Including humour and faith, church history, St Paul on women - and, um, the European Union. Not sure how that last one fitted in.

YOU Are Responsible For Access

2009-11-03T10:17:00.005Z

NaBloPoMo, day three. I am incredibly tired, so this is partly cross-posted from somewhere else. That's spoon-saving, baby.

I am so sick of people assuming I can always manage inaccessible venues - which gets them off the hook from having to arrange accessible ones - because I sometimes use crutches. My church is holding confirmation classes in a venue which has "a few shallow steps". This unwillingness to think about access means that the burden is conveniently shoved onto me - the burden of finding accessible parking near enough that I can walk in, the burden of coping with steps, the burden of sitting on unsuitable chairs in pain for an hour and a half so that the following day is a nightmare of agony for me...

And then there's the situations where friends organize informal things in inaccessible places. They tell me how awful it is that the place isn't accessible, and shouldn't society try harder? No. YOU should try harder. If you are organizing something, you are responsible for making sure your disabled friends can get in. Otherwise, they are left feeling like you don't want them there. As I feel this week about something that was organized in such a way that I couldn't get to it.

This isn't right. We are society. When society creates disabling situations, that's because, one at a time, individuals contribute to this creation of disability. People need to think about things like access - it's not all my responsibility. I've e-mailed someone important at church to say I'm 'worried' about access. I could have put that more strongly, but I'm British and passive-aggressive.

Damn, but I wish I'd inherited more Irish character for these situations.

Instant Access: Missing the Tangible

2009-11-02T11:23:00.004Z

NaBloPoMo, Day Two - Monday thoughts...

The one and only reason why I would buy something like Amazon's Kindle would be instant access to books. I love books, and a big part of that is the feel of them turning down the pages I want to go back to until the whole book is a beautiful dog-eared mess, the look of them arranging the higgledy-piggledy multi-coloured rows when I walk past and wondering how they get so messy again so fast, the amazing sense of them they're spread out all over my desk and spilling onto the floor and I am clearly working on something awesome underneat all this literary mess. None of that complete experience of books is possible if they're all neatly organized in little tabs on an electronic screen, and I'd never exchange my life is books for my books are in this little reader and my house is tidy and empty and dull.

At the same time, sometimes I want books NOW. I wouldn't object to a bookshelf into which I could type in 'The Shining' (I want to see how it compares with the film, having been to see that on Saturday and remembered how odd it is) and have it appear, transported directly from Oxfam Books, pre-dog-eared and fully, deliciously tangible, at the end of the Fiction shelf.

I don't want to give up CDs for similar reasons. Unlike a lot of people, I still buy them - I have about 200 and counting, all on display in our new CD case. They're not as fast, as easy or as world-accessible as being able to bring up Spotify, select a song I've heard, listen once more to be sure I like it, go over to iTunes and buy it. But how can I sit in the dark for the first time with Tori Amos or Missy Higgins or Kristin Hersh if there's no effort involved in stumbling upon them and considering whether to buy them and that incredible moment when I first experience their latest musical triumphs? I'm fairly sure they wouldn't say that their life's work is to create background music for shopping malls, dinner parties or internet browsing.

And yet, it's so easy to bring Athlete's latest, conclude that 'Black Swan Song', while a work of genius, is the only good song they've written in years, and move on to the next thing.

I'm a devoted minion of the internet and everything it has to offer, but I still wonder. In our society of instant access, where we no longer remember how to postpone gratification for a better reward, are we sleepwalking into an entirely virtual, self-referential-with-nothing-to-refer-to, eerily empty postmodern world?

Still, I'm off to iTunes to buy 'Black Swan Song'. It may be an emo-inspired, easy-listening ditty for the instant gratification generation, but it's still really good.

NaBloPoMo

2009-11-01T08:14:00.003Z

I can't remember whether it was last year or the year before that I participated in NaBloPoMo (or NaNoBloMo), the blog-based alternative to NaNoWriMo for those of us who are far too lazy and/or untalented to commit to writing 50,000 words in a month. I have neglected this blog appallingly during my MA year, but I really ought to rectify that oversight. A friend just posted on FB that she was doing NaNoWriMo, and it reminded me how much I enjoyed attempting to write something every day of the month last time. So here I go with trying.

However, my life is currently entirely overwhelmed by The Research Project From Hell (OK, it's not that bad, but it is taking over my life entirely and proving impossive to crawl out from underneath - let's call it The Research Project from Purgatory). So there isn't a great deal to say today.

Yesterday being Halloween, we went to the new ('largest screen in the world') drive-in at Pinewood Studios and watched The Shining. Not the greatest film ever. Visually stunning and effective, but not great in terms of plot or character development. We also noted Kubrick's huge debt to Hitchcock.

I am about to go to church to celebrate All Souls' Day (which is actually tomorrow, but we did All Saints last week), where the Mass will be said for many friends and family of the congregation who have gone ahead of us. Including my grandparents. Should be a good service. Happy All Hallows Day, people.

The golden evening brightens in the west;
Soon, soon to faithful warriors comes their rest;
Sweet is the calm of paradise the blessed...
- 'For All The Saints', William Walsham How

What I've Been Reading

2009-10-18T09:39:00.005+01:00

My blogroll is never very long, because I have mild* OCD and can't bear clutter, even on the right hand side of a blog post. But in lieu of actually doing things with my life worth writing about (hence current acute posting shortage), I've been doing a fair bit of reading during dissertation downtime. Which, when you have fatigue issues and are supposed to be working on something intense, is a lot of the time.

I can't believe it's taken me this long to find FWD/Forward at http://disabledfeminists.com/ . It's a team blog on the subject of disability and feminism. There should be more blogging about the spaces where disability, sexuality, gender and life converge. This is a fantastic example of such.

Cripchick's blog is a poetic, activist take on life and disability. I'm still wrapping my imagination around the poem she put up yesterday. Beautiful and world-expanding. The theme of this year's Greenbelt festival was 'Standing in the Long Now' and experiencing moments in time as moments in eternity - but I too often waste energy fighting to get past the many moments of frustration in life, rather than appreciating them with the depth that Cripchick does in this poem. I want to see the frustrations of the 'carer'/disabled person relationship as more than something to endure as quickly as possible.

My Girl is blogging her journey through her father's experience of cancer at http://twentysevenpercent.blogspot.com/ . She wrote about planning and living life yesterday, in a way that made me think differently about how well we cope with disability, as a disabled family (that's how I think of us, along with multi-cultural family, and mixed-religion family, and really will be married soon, if we can just get a bloody move on with the planning family). It's interesting when you get the chance to see these things from up on someone else's viewing point - if only in passing. I spend so much of my life thinking I'm a failure at, well, everything. It's sometimes useful to remember that I have a lot to deal with, and that I usually deal with it quite well. Not the most social model or activist-y viewpoint. That doesn't matter. To everything there is a season...**

Other stuff:
- ASBO Jesus makes me happy
- Two Lumps is one of the funniest online comics out there
- Shapely Prose is amazing and inspiring writing, whatever size you happen to be: check out Schrödinger’s Rapist
- Thinking Christians of any denomination will adore the Sarcastic Lutheran

Anyone know any good sociology/social theory blogs? I'm in the market for some reading around such things.

And with that, I must fly. I mooted the idea of a lay choir at church, and suddenly I'm one of the founding members of something that might turn out to take up rather a lot of time. How I get myself into these things, I do not know. (Well, I do. I say things, while in sub-hypomanic I can do everything mode, like "I'd like to set up a lay choir" and people actually take me seriously. Crazy.)

Wanders off singing 'Praise God from whom all blessings flow'...

*Ha. Ha, ha ha ha, ha.
**Ecclesiastes 3:1

'Save Our DLA' Campaign - Some New Ideas and Thoughts...

2009-08-22T15:04:00.003+01:00

One of my fellow DANners posted the following idea online, with another campaign action suggestion. (He's given me permission to copy his post and spread the idea around.) I love this idea, and I'm going to do as he suggests.

I have something of an idea for immediate protest, for those of us who are fortunate enough to receive DLA Mobility Component and have a Motability car, on finance or lease.

In recent days, I've taken the liberty of writing to Motability and the Minister for/of Disabled People (Jonathan Shaw) suggesting, that if my DLA care Component is ever given over to my Local Authority to 'supposedly' provide a care package for me. That, "as I seldom have enough money for care and also food and other necessities, I will be applying to cancel my Motability lease, as soon as, or, if the Government decide to divert or remove my DLA Care Component. In order that I'll have enough money to live on."

I'd maybe like to see others do the same, or similar? I think the threat alone to Motability and Government 'face', would be enough to see a complete backdown of this 'hair brained scheme' of the Government's?

Motability is seemingly worth in the region of £16 billion pounds a year to the British economy and motor industry, to say nothing of the revenue the Gov't takes in, in fuels and oil consumption from recipients! There's also maintenance and upkeep to be threaded into theses costs and the cost in human terms if some 250,000 cars were suddenly disposed of and flooded back onto the second hand market!

Worth a thought and some possibly, some action?

- wheelzuk

I would add to this suggestion of writing to the minister and/or to Motability generally, that we could CC our letters both to the chief executive of Motability and perhaps also the Transport minister. If the government doesn't care that taking away our DLA care component will have a knock-on effect on our whole lives, maybe they need to start realising that it will also have a knock-on effect on the whole economy. There are, after all, a lot of us out there...

---

A lot of people have been pointing me towards CPAG's published 'assurances' that DLA will not be affected. (Interestingly, they have taken down their earlier press release about this.) "It's only Attendance Allowance, so that's all right," I'm now hearing from fellow campaigners. A reminder of three things here:

1. If the government sets the precedent of taking away cash benefits and handing them over to local authorities, do we really believe they're going to stop at AA? Once a precedent is set, it's far, far easier for the government to say "It worked with AA" and remove our DLA - without having to write a new Green Paper on the issue.

2. Do we *really* trust the government on this? We've heard similar assurances on the new Employement Support Allowance that have failed to materialise. Once the government's broad phrase 'disability benefits' in that Green Paper is passed as *law*, do you really think they won't use that as a perceived mandate to get rid of DLA too?

3. If it really is 'only' Attendance Allowance that's going to be scrapped, are we actually going to sit back and do nothing because it doesn't affect (most of) us directly? The principle of independent living should apply to ALL disabled people, not just the disabled people who are under 60. An ageing population means the majority of disabled people are 60+. They need our support just as much as younger disabled people do. Maybe more, because they're being herded into care homes en masse. (I know - my father owns a nursing home. His is a very nice one, but I still wouldn't want to be *forced* to live there when I wanted at least the choice to remain living independently at home.)

ADD YOUR CAMPAIGN IDEAS in the comments! I'd love to hear what people have been doing. Me, I've been promoting the idea on every social networking medium I can find, getting my friends, family and PAs to sign up for the campaign, trying to help spread other people's ideas, and writing the odd e-mail. It's not much. (I've had swine ful - talk about 'viral campaigning', haha. I am, ergo, utterly spoonless right now). But I continue to believe that armchair campaigning and 'viral' networking like this CAN make a difference. Just look at how many thousands of people have signed up to contribute something to this one campaign. Last I heard, it was over 20,000. Now that's not bad.

In Our Own Words: Fighting For Our DLA

2009-08-06T10:38:00.008+01:00

What Lisy says:

Without my DLA I'd be practically housebound, unable to afford supermarket deliveries and would pretty much have no quality of life at all. Also bear in mind that most people develop some kind of impairment in old age; Attendance Allowance, a benefit for over 65s who need assistance, is currently the benefit at the top of the 'at risk' list. So signing this petition isn't just for those who are currently claiming, signing is an investment for your own future!

What BendyGirl says:

It's impossible to explain how much people like me rely upon the extra income from Disability Living Allowance... Without my DLA I would be housebound. I would not be able to afford to run a car, without which I cannot shop, access health care, collect prescriptions or pay for the care I receive. The idea of allowing local authorities to control this benefit is enough to give me nightmares for the rest of my life. Local authorities already ration care, the process is desperately stressful and only those considered to have 'critical or substantial' needs will qualify. Trying to justify oneself as disabled enough for the local authority is the most degrading thing I've ever experienced, topped off by a social worker who clearly stated he would 'ensure I lost my entire care package'...

What I said:

Benefits and Work sent me the following e-mail. They're looking for 1000 people to sign up before they start hardcore campaigning, in order that there are enough people on board to make a different. I think their campaign is massively important, given the serious threat to our Disability Living Allowance*/Attendance Allowance** and other benefits.

DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.

Yet the government is proposing either means-testing DLA and AA, or removing it altogether. Their proposal to put the money in the hands of local councils is TERRIFYING, especially to those of us who have experienced first-hand the way that council-funded care has been limited, cut and removed from a majority of disabled people. Councils would leave DLA claimants without enough money either to fund their care or to cover their disability-related costs. The end result of this could well be the death of the poorest disabled people. Do we want to live in a society where the richest are subsidised to the tune of millions (HBOS et al), while the poorest people with the highest costs are left without enough money to fund their care, to support their mobility needs or potentially even to eat?

Benefits and Work's e-mail about their campaign, detailing their campaign, is copied below. As of this morning, they have over 5000 people signed up to this campaign. We need more people involved, because not all disabled people have the energy, resources, money or access needed to campaign on this issue. Ironically, and usefully for the government, the fact that we are disabled could lose us our disability benefits. So we need YOU.

_______________________________________________________________

Claimants have just 100 days to prevent their DLA and AA being abolished.

A government green paper has revealed proposals to stop paying ‘disability benefits, for example, attendance allowance’’ and hand the cash over to social services instead.

Under the plan, current claimants would have their disability benefits converted to a ‘personal budget’ administered by local authorities and used to pay for services,– not to spend as they wish.

Once the green paper consultation period ends in 100 days time, if an almighty row has not been raised, it is likely that both major political parties will see the lack of outrage as a green light to end both DLA and AA.

We’re looking for a minimum of 1,000 claimants, carers and support workers to join our campaign to save these benefits from being abolished. Find out how you can take part from this link:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts

We know that many people will take false comfort from the fact that, unlike AA, DLA is not specifically named as being for the axe. But if the government was planning only to abolish AA it is extremely unlikely that they would refer constantly throughout the green paper to 'disability benefits', a term which includes not just AA but also DLA.

Others will dismiss this as just another idle discussion document and our concerns as scare mongering. But it’s much more than that.

36 meetings have already been organised around the country for people working in government and the caring professions to meet to be told about the setting up of a new National Care Service which would oversee the system. In addition, a stakeholders panel of more than 50 voluntary sector organisations, trades unions and academics has been established to offer advice to the government.

Some organisations and individuals, such as RNIB and welfare rights worker Neil Bateman writing for Community Care magazine, have already voiced their alarm.

But not every disability organisation is opposed to the proposals and some even agree with them.

In a press release, Disability Alliance has welcomed the publication of the green paper and said that it 'looks forward to working alongside Government and all the other stakeholders in bringing these plans into fruition.' They have even said that they agree that there is a case for 'integrating disability benefits such as attendance allowance' into the new system.

One thing everyone does seem to agree on is that huge cuts in public spending will have to take place in the next few years as a result of the credit crunch and global recession.

Political parties are desperately looking for the softest targets to be the victims of these cuts. Dismissing the green paper’s proposals as hot air and not worth worrying about could be the costliest mistake you ever make.

Find out more about the proposed abolition of DLA and AA and how you can join our campaign to fight back:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts

The government's green paper on care threatens to remove our disability benefits, currently given to us to cover our disability living expenses, handing the money over to local councils (so that they can treat us in the way BendyGirl describes above). This would be a disaster. DON'T LET IT HAPPEN. Join the campaign.

And to end with more reasons, in our own words, why we can't lose this benefit - Batsgirl says:

The reason DLA and AA are given as money and don't require receipts and suchlike to prove how the money was spent, is because of the huge diversity of disabilities and living conditions it covers, and because the expenses don't always work out that neatly.

Let's explore an example: grocery shopping. I have to pay more for my grocery shopping than an able-bodied person.

First of all, I have to pay for home delivery. I rarely have the spoons to manage to get all the way around a busy, bright, noisy, complicated supermarket, even with a mobility scooter - much less to then be able to get myself and my shopping home, and then immediately put it all away as well. To someone with a condition that makes moving about painful, who has difficulty lifting and carrying, who becomes tired very quickly, or who is easily confused, that's a triathlon.[...]

I had typed as far as my ninth point before I realised I'd gone a bit off course and deleted most of it. Hopefully I've demonstrated my point: disability-related expenses crop up in unusual ways and aren't always possible to calculate - which is why getting DLA or AA in the form of extra money to be spent at the claimants' discretion is utterly invaluable.

*DLA is given to claimants up to the age of 65 who have significant care and/or mobility needs.
**Attendance Allowance is the equivalent benefit for those over 65 - but there is only a care component, no mobility. As far as I can tell, this is because people over 65 are expected to have mobility problems. Nice.

My Little BADD Round-Up

2009-05-03T09:56:00.006+01:00

May 1st was Blogging Against Disablism day. Dozens of entries get written for this every year. I usually participate, but this year it was just too much to think about. Instead, here are my four favourites so far. I still have more to read, but these struck me as very powerful. Oppression is everywhere - it's there when we protest for our rights, when we go shopping, when we turn on the TV, and in every aspect of our lives, from the inconsequential to the life-altering. These posts explore those dimensions of disablist oppression. Read; think; remember.

More people need to know what happened to ADAPT at the White House last week, and about the parallel events involving the Autistic Self Advocacy Network's recent protest. If we shut our eyes to oppression, it continues. Autism - Change.org discusses the details.

On dreamwidth, Trouble Is Everywhere writes about a Torchwood episode that I don't remember recognising as disability-themed, at least not to the extent that Trouble noticed. I need to watch it again and take note, because, as I said in a comment, if we don't stop and acknowledge this kind of mainstream media disablism, it will only carry on.

I adore Hoyden About Town's post on needing a seat. Access issues that don't involve ramps are so often overlooked. (And wheelchair users face these kinds of overlooked access issues too.)

Disablism is a daily part of many people's lives. Acknowledge it, challenge it, don't perpetutate it. Wheelie Catholic's post struck a very loud chord with me.

Blogging Against Disablism Day, 2009

2009-05-01T16:54:00.004+01:00

Alas, this year I will not be Blogging Against Disablism. This is because I am in the middle of two 6000-word essays that have the potential to make or break my future (mainly because it's a disablist world out there and I need to go above and beyond to have any chance of overcoming that), while fighting some VERY frustrating impairment-related crap that wants to stop me working on said 6000-word essays, as well as moving house and some other fun.

And so, in lieu of a post, I would like to draw your attention to The Goldfish's Blogging Against Disablism 2009 archive. It will grow throughout the week as people add their posts to it. It is a truly awesome annual online activism-fest, and everyone should read as much of it as possible.

This year, I particularly recommend Batsgirl's post on issues and expectations around disabled parenting. It will make you think.

Happy Blogging Against Disablism Day.

STRESSED

2009-03-16T07:20:00.004Z

I seem to have lost the ability to format my posts properly. This is very strange.

I am stressing massively, in a way that only a dyspraxic with obsessive tendencies can.

I sent an e-mail to my tutor yesterday, having *lost the plot* over one more inaccessible situation (not physical access issues - more structural, if that makes any sense). I offloaded about *all* the stress that structurally and attitudinally inaccessible situations have been creating for me on the course, over the last few months in particular.

Now she's likely to want to know exactly what the problems are and what can be done about them. Putting them into words? Not going to happen...

I've held it together by a thread - but still quite impressively and successfully - for six months in this situation. I don't like people seeing how vulnerable I am. Especially worried as I've just been accepted for a PhD (no news on funding yet so it may well not actually happen) and I really wanted to communicate the illusion of how capable and normal I am in relation to that. Who'd appoint a teaching assistant who can't cope with ordinary circumstances on an MA course?

Argh.

Brief Update

2009-03-12T18:26:00.003Z

...as I have been away too long.

Recent events include:

- Getting one distinction and one merit, and deciding to apply for a PhD anyway (and then changing my mind the minute the application was in and it was too late)

- Having the worst Friday 13th of my *entire life*, involving broken lifts interrupting my studies and forgotten passports nearly ruining Dublin holidays (but The Girl, ever the hero, had us on another flight by the next day)

- Broken powered wheels, frustrating inabilities to focus on work, general irritation at PAs (it's not personal), and a DAN demo that I almost didn't make it to (but some great friends helped me out and I got there in the end).

Currently having:

- A month of (mild, fortunately) depression over missing The Girl, perceiving exploitation in my department (whether or not it's real), and generally being tired and in pain

- Some surprise, some worry and a general ontological crisis following acceptance onto my PhD (but I probably won't get funded, so I'm trying not to worry too much yet)

- Delight at finding a doctor from whom I can get exactly what I want, when I want it, and realising that it's partly because I now know what I want and when I want it.

Going back to debates over professional power, emancipatory research, and women and medicine now.

Impairment, Disability, and why we still need the Social Model...

2008-11-17T21:10:00.005Z

The reason I've been absent from here for, like, weeks at a time is that I'm writing an essay on impairment, disability and the body. (Why yes, I did decide to jump straight into one of the most controversial issues in the whole of Disability Studies and see if I can swim. Not sure what the verdict is yet. If I drown, I'm sure you'll hear about it.)

It turns out I'm more committed to the social model of disability than I realised I was.* I knew I was a fan - what else has changed lives, motivated mobilization against oppression, and brought people together as much as the social model has? But, being a person with a chronic illess (actually several chronic illnesses, including a mental health problem) as well as a disabled person, I've also long been aware of the shortcomings - not of the social model itself, but of what's been left out in its adoption by the disabled community. It doesn't talk about what Carol Thomas calls 'impairment effects' (which are different for everyone, but might include pain and fatigue). That irritates some people, including feminist critics (who think the social model is influenced by patriarchy) and postmodernist academics (never read Tom Shakespeare, never ever, very silly man), all of whom think it is incomplete and either needs altering or dumping.

And yet, despite all that, I remain convinced that the social model is still the most powerful tool we have for change.

It's an awfully odd experience, sitting in a classroom full of people who aren't even bothering debating the issue, since they've all decided that the social model doesn't need changing because it is the way to change the whole world, in all areas from euthanasia and eugenics to education and health/social care. It's brilliant, of course. (If a bit disappointing, as I wanted to sound off about Tom Shakespeare. Although instead I got to sound off about student media that publishes disablist crap and gets away with it. More seriously, I did want to talk about Liz Crow's amazing call for the disabled movement to start considering impairment. But I shall write about it in an essay instead. There's some incredible writing out there for those who want pain, fatigue, terminal illness and other impairment effects to be taken more seriously in the disability rights movement. I can recommend reading, if anyone's interested.)

But it's also got a less empowering edge to it, that ongoing experience I'm having of being surrounded by non-disabled allies (my class is made up of about a 3 non-disabled to 1 disabled student ratio this semester) who have made up their mind about how infallible the social model is. It feels just a bit too much like religious fundamentalism to me. And maybe even more dangerous than that, since it's not quite 'nothing about us without us', however fantastic, well-read, well-meaning and committed to the cause these people are. This became really clear to me last week, in a conversation with one of them (an awesome person, btw) who wasn't willing to listen to my opinion that life is, arguably, always worth living, even if that life involves quite a lot pain. He didn't mean anything negative; he thought he was representing people who didn't have a voice in that argument. But then, that was exactly the problem.

And it was then that I realised exactly why 'nothing about us, without us' is an absolute essential. Yes, it might leave non-disabled allies feeling excluded - that's a risk we'll have to take. And we need those allies, and should continue to welcome them into the cause. But they can never be allowed to speak for us. That's at the heart of what the social model stands for. Attitudinal barriers are everywhere - even among the most enlightened of non-disabled people. While it's extremely important to 'bring back' (to quote Liz Crow) our experience of impairment into the wider debates of the disabled community, the social model has to remain at the forefront of everything we do - at least until every single barrier, attitudinal or otherwise, has been purged from our society, and we speak for ourselves.

I should be getting some of this into an essay, but I've got a cold. (To quote The Girl this morning: "This is what happens in November. There are viruses, and I have them and then you catch them from me, and then there are wheelchairs..." Heh.) So instead I'm watching Stephen Fry in America, and a bit of Firefly. Best not to stress about the regular necessity of recuperation when you're a sickly child. Especially when said recuperation can involve tea and Joss Whedon.

*I have just spent ten minutes looking for a good definition of the social model online, in order to illustrate this concept for those of my readers who are not aware of it (all two of them). I could quote an 'original' definition, but there are at least two different versions, and I can't choose between them. All the online definitions I can find are ridiculously wordy, when it's really a very simple concept. A prize** for anyone who can comment with a good link that explains the social model in less than 100 words. Or who can do that themselves.

**The prize is metaphorical. Sorry.

Progress

2008-10-14T16:08:00.005+01:00

Half of the automating work on my bedroom door has now been done - thanks to intervention from: The Girl, the disability support team at the Equality Service, the Equal Opps Officer for the School of Sociology and Social Policy, the Director of Estates, and the head of the Disability Studies course (who also happens to be my personal tutor). Apparently the motto is something like 'when all else fails, get in with the top people'.

So I am now able to kick my door open without injury, and on Friday I'm promised it will be fully automated. We shall see, of course, but right now I'm just happy to have injury-free entrance and exit to my own home.

As I said thanks to the Accommodation Services woman for (*finally*) arranging this, I heard myself apologise for being 'difficult'. Oh God. Someone please have me shot - I'm a really, really terrible example of a disability rights activist. (But seriously, how do you thank someone for arranging something about which you've been really quite forceful, while acknowledging both their hard work and your inconvenience, without either backing off from your original strong position or sounding ungrateful? Best answer wins the last gingerbread person from a lovely little homemade batch that my PA brought me the other day.)

More Glorious Weeks

2008-10-13T11:07:00.005+01:00

It could perhaps be seen as a bit ironic that this week I'm reading up for a seminar on 'disability as social oppression'. Hmm...

The access nightmares here continue. I discover more and more that they are ticking the boxes for access, but don't always have what they promise. Last week I disclocated my wrist opening my bedroom door, which I have been complaining about for the past four weeks since I moved in - it's supposed to be being made automatic, but they're dragging their feet on technicalities. Meanwhile, I've been trying to get union lifts fixed, working on sorting out some fairly major PA problems, and attempting to persuade the police that the long row of cars *entirely* blocking the pavement (and therefore my access) to my own house is an issue that they need to do something about. No one is very interested in any of these, or any of the other dozens of DDA-flouting barriers I keep running into. Latest development on the nasty door: two security men come around to see if "the rodent" - my hamster - has been removed. It has. They are satisfied and make as if to leave. I say as politely as possible, "Are you able to tell me if there has been any progress on the door?" Apparently it is now 'out of their hands' and been sent on to be dealt with by a higher authority of some kind. Have I been informed about this? When The Girl rings Accommodation Services about it, do they know anything about this development? I expect you can work out the answer to both those questions. TG is currently working out who the registrar at my university is - she's going to make a high-level complaint. Looking forward to it. Not particularly hopeful though.

[insert three-hour-long break here]

I was going to write a paragraph on my reading into social oppression and disability, but I've just come back from a lecture *on disability in film* which was completely wheelchair-inaccessible, and I can't quite deal with the theory while there's so much practical crap going on with it. Maybe tomorrow you'll be lucky enough to hear about why Paul Abberley thinks it's important to consider issues of impairment which is created by society, just as much as the social construction of disability. (Pray that you are not.)

Adventures in Lifts

2008-09-26T22:01:00.004+01:00

ARGH. I am trying to read about the ICIDH (for a seminar this afternoon on Disability and Language). The ICIDH was the forerunner to the ICF. Both are largely medical-model in outlook, although their original designers didn't think so. There are a few redeeming features to both which are interesting to consider - for about two minutes. Then it all gets horribly *dull*. It's a go-nowhere debate, because although I agree that the ICIDH is pants and rubbish in itself, and the ICF not much better, the sociologists behind them write (mainly) nice things about how they intended the focus to be social not medical, and the Disability Studies proponents reply with angry articles about how they didn't achieve this aim, and no one can see anyone else's viewpoint, and never the twain shall meet. And in the meantime, I *know* the social model - I'm revving the engine trying to get into the more interesting stuff (coming up in future seminars) about social theory of disability, and such fascinating ideas as whether that can include those who don't feel included by the social model without alienating those who are completely in love with the aforementioned social model and will never deviate from any of its claims... My problem is also that I can see both sides of the debate on language, being a linguist. I was once a firm believer that 'impairment' and 'disablity' were entirely separate things that had almost no relationship to each other. Listening to the views of real disabled people (*not* non-disabled sociologists who are stuck in their academic ivory towers with the high windows and blackout blinds) has led me to begin to rethink the relationship between the two. But as I say, that's for social theory, not social model, as I won't have anyone touch the social model with so much as a fingernail, or I'll bash them over the head with Haralambos's 'Sociology: Themes and Perspectives'. Which is very heavy. Just so you know. So, yes, my views are complicated. I have a feeling this course is only going to make them more so. Hurrah. I think...

But never mind. Let's talk about just one reason why the social model is still Queen of All, especially where the education of poor unwitting little non-disabled people is concerned. I am having interesting encounters with lifts at the moment. Last Friday evening would have been fantastic (Sci-fi Soc film night: Doctor Horrible and Stardust - fun with supervillains then more fun with gay pirates, hurrah), were it not for the sodding union lift that is seriously getting in the way of my life at the moment. Well, primarily the lift. Also the attitudes of union staff. (Ah yes, because disabling barriers can have many dimensions.)

Between films, I took the lift down from the second floor, where we were enjoying our televisual delights, in an attempt to find myself an accessible loo and a cup of tea. On reaching the ground floor I went into the bar, where they were just closing up, but were kind enough to grab me a takeaway tea while doing so. I tried to head back out the doors I'd just come in through, but found them locked.

I should, at this point in the story, make it clear that there are two different lifts on two different sides of the union building. Each lift goes to different floors, but they both happen to stop on the first floor. By locking this door, the staff had blocked my access (on this floor at least) to the lift I needed to get back to the second floor. I could have asked at the bar for it to be unlocked, but I reckoned that by the time they'd called security etc to arrange this, it would be quicker to go up in the other lift to the first floor and then change to the other lift there for the second floor.

So off I go, arriving on the first floor and heading across the corridor to the other set of lifts. All is going well, until I encounter *another* set of locked doors. Right, I think, I'll head over to reception to get everything unlocked, then go on my merry way. Except that, on returning to the other lift that I had exited from literally moments before, it becomes clear that it has broken down. For the FIFTH time that week (and those were just the times when I was there to count). I am now stuck on the first floor and, regardless, have no way of getting back to my society's meeting room. I make a *massive* fuss about all this (as I'm sure you can imagine). Security staff are called to help. They tell me - like so many union staff have during the Glorious Week of the Broken-Down Lift - that "it's a very old and unpredictable lift". I see - does that mean you're flouting the DDA any less? They then tell me that they always lock up the other set of lifts because they're under pressure to get "as many doors locked as possible". They say that if they had known a society was meeting, they wouldn't have done. I think this is probably rubbish, as the Sci-Fi Society meets there every Friday. I take their e-mail addresses so I can inform them every time I want to use that floor in the evening (although that reminds me - I shouldn't have to, and I need to raise this with the Exec at some point). I then, finally, get taken through to the lift, with a promise that they will not lock me into the building. (Which turned out to be only half-true - the automatic doors had been shut off when I got back to the ground floor, and I had to struggle with the manual ones, but these were at least unlocked.)

As you can imagine, I complained to the Exec about the lift at the end of the Glorious Week. They've said they want to get it replaced, but I have yet to hear if they are going to. I'll keep bother them about it. Repeatedly.

The Social Model: until society sorts out its bloody lifts, it's not a bad start.

And now I have to go and finish reading too many people debating it. Gaaaaaaaah.

'Are you sure you want to remove --- from your friends list?'

2008-09-25T22:49:00.005+01:00

When the most you've heard from them in a year is very occasional 'status updates'...

When you know lots about them, but are no longer sure who they are...

When they live a few suburbs away, but might as well be in Australia for all you see them...

When their busy, active social lives clearly continue, but no longer feature you...

When you're spending far too much time trying to figure out how much of this is in response to your still-quite-recently-acquired disability...

...is it time to reconsider our post-modern, post-reality, post-everything concept of 'friendship'?

And how would a better, more real, more meaningful version of that concept look?

And...

...because this is the bit that makes me stop wondering and try to forget the whole thing...

...would there be anyone left?

...

Warning: Rant Approaching

2008-09-17T11:06:00.011+01:00

Why is the Department for Work and Pensions so bloody stupid?

I claim various benefits through the DWP. My most recent claim started several months ago, but I've also been getting DLA for the past eighteen months, so they definitely know of me. I sent them masses of information when I most recently claimed, including details of statutory sick pay that I had received. This sick pay was incorrectly paid, as I was supposed to be getting IB for that period (but this is the DWP's problem, not mine). But they know about this sick pay, and they have even just sent me a form to sign to confirm I received it so that they can sort out the error.

Today I make a claim for a new benefit, due to a changed circumstance. I have to spend thirty minutes on the phone, at my own expense (I will need the new benefit just to cover this month's mobile phone bill). They asked a ridiculous numbers of questions to which they already knew all the answers, or would have done if their systems could cope with this fact. And now they want documents to prove my identity - even though I've already sent them all these before - including the payslip proving I received statutory sick pay. But you already know about this, I say, you sent me the form. We still need it, they say. Why, I ask. We just do, they say. Right. Well done.

The government wants to save money in relation to the benefits system. It's targetting sick people who can't work, as a result. It would save a lot more by looking at how much time, effort and funds are wasted by pointless, incompetent bureaucracy.

Incidentally, this payslip is back in London, and I'm not going back there to get it. They can wait for it, or they can accept a copy of their 'you were paid sick pay incorrectly' form, which should be proof that they know about the sodding sick pay. Probably won't be good enough, but it's all they're getting.

OK, I'm done.

So I moved to Leeds a week ago. It's been fine, apart from some minor irritations (like the one described above). I have appointed PAs - one has started, and is a star; one has accepted and will start next week; I'm waiting to hear back from the third. Then I will actually have enough support to do actual things. At the moment I'm doing a lot of messing around with my computer (I knew I should have brought The Sims with me) and watching TV, on account of being short of help and having moved house, thus being rather tired. But it will sort itself out soon. Leeds is a great town, and the uni is buzzing, even though most of the students aren't here yet. It's going to be a good year.* I start early induction for disabled students today, which is a really useful-sounding thing that the Equality Service** provides. I'm hoping they will show me how to cross campus and/or the city without meeting ridiculously high un-dropped kerbs all over the place. It will also be nice to meet some Real People - here I have one flatmate who shares my kitchen and shower room (I have my own toilet room though), and someone upstairs who I don't see, and that's about it. Although others will move in soon.

Must go to library soon. Really must...

*I have decided this. Yes.

**Which will henceforth be known in this blog as Disability Services, as they should be called, because I just can't say that weird-sounding PC-friendly equivocation by which they laughingly refer to themselves.