29 May 2015

Just put the shovel down, Ted. #StellasChallenge

Sometimes, you really have to stop digging. TEDxSydney need to learn this lesson.

Last year Stella Young gave a talk at TEDxSydney about Inspiration Porn. She died seven months later. So, TEDxSydney decided to launch a memorial challenge at this years event which they called #StellasChallenge.

So far, so good: Remembering great people we've lost is really important to keep their thinking and ideas alive.

Except the "challenge" was so bad it's clear they didn't pay any attention to the speech given at their event and then posted on their website.

The challenge was to go out and interview random disabled people (or "people with disabilities" as they called us) about our social problems. I can't link you to the page which they used to launch the challenge because they've deleted all that content from the page and replaced it with some other rubbish. Like I said they've got the shovels out to dig themselves a hole and I guess they hoped that if they deleted the content, we'd empty our poor little disabled heads of their fuck up.

However, they encouraged their fans to ask us disableds their probing questions via an app and posted a page of instructions on how to do it. Now because they deleted that page entirely (rather than just deleting the content but leaving the page on their website) it's available via Google Cache. And it tells you all you need to know.

In Stella's talk, she talked a lot about the objectification of disabled people. And so they created a memorial challenge which objectifies disabled people and treats us as self-narrating zoo exhibits.

Just look at the fucking questions TEDxSydney wanted nosey bastards to ask us:

Would you mind if we talked about your disability first, so that I can understand how best to refer to it, and would you mind if we explored how it has impacted your life?

"I'm a social modelist. My disability is the social, architectural and attitudinal barriers that prevent me from living as a full and equal citizen. I guess you were hoping I'd spew up information from my medical history? Well, tough luck. My diagnoses are my personal history to share as I see fit, not public domain information you have a right to demand from me."

Have you encountered attitudes that you would like to change?

Yes. The attitudes of people like you.

What one thing can we do today to make a change towards social inclusion for disabled people?

Stop harassing us and demanding our personal information while we're just out trying to buy tampons.

But it gets worse. Apparently no-one at TEDxSydney has ever heard the disability rights mantra "nothing about us without us" because they want to ask probing questions of carers too like:

Can you tell me who you are, what role you play for someone with a disability. How long have you done this and for whom?

What impact does this have on family life?

How do you think Australians view people with a disability? Can you give examples of why you think this?

How does that make you feel?

If someone wiped my arse and they blabbed about it to some wankstain with a recording app on their phone, they'd be fired fucking fast. If someone assists me with my personal daily activities then what they do for me is confidential. Clearly no-one at TEDxSydney thought "Hmmm. If someone washed me genitals for me, would I consent to that person telling the world about it?"

It's also noteworthy that the carers get asked about their feelings and the impact on family life. I guess because we're just objects we don't have feelings. Or families.

It's just so obvious that they paid no attention to anything Stella said either during their talk for them, or at any other point during her career.

Stella, like me, used social model language. She had written about her feelings about language in the past, and in her TEDx talk clearly says "I use the term disabled people quite deliberately because I subscribe to what's called the social model of disability," yet TEDxSydney insist and persist with saying "people with disabilities" in a "challenge" that supposedly memorialises someone who objected to that mindset.

Stella had also written her objections to strangers demanding our diagnoses from us. Yet this is the first thing those TEDx tossers wanted strangers on a train or people taking our chai order to know about us.

Unsurprisingly it turned into a social media shitstorm. After 2 days TEDxSydney finally said "we were wrong, we're sorry."

Not that bloody sorry though because their apology is another thing they've deleted from their website. The hole they've dug is now basically their own grave, isn't it? The only remnants left of their brief sorrowful phase is a tweet:

(But there's no point in clicking the link in the tweet, because, as I said, the apology has been deleted. I'm surprised the tweet is still up.)

Just when you think it couldn't get any worse: The medical model language, the objectification, the demanding of medical histories, breaking the "nothing about us without us" rule, apologising and then deleting the apology from their website: They grasped those shovels even harder and dug ever deeper.

Apparently us poor little disableds weren't upset because the challenge was an insult to our humanity. Apparently we're can't know what we are or are not upset about. Hundreds of people told TEDxSydney what bothered us about the project, but we don't know our own minds so they have decided that our problem is...

The community is still grieving Stella’s tragic death, and we recognise that it is too soon to be using her name. We will rename this project in consultation with people with disabilities.

From this page as it currently stands, but don't be surprised if they delete all the content again by the time you visit the site.

Yep, they're going to go ahead with the insulting, dehumanising self-narrating zoo exhibit project. Just taking Stella's name off. This is as wrong as they could possibly be.

The project is wrong. Everything about it is wrong.

A well thought-out project by which to remember Stella is a great idea. Like I said, we need to remember the ideas of the great thinkers we've lost.

So they want to ditch the notion of remembering Stella but keep the idea of exploitative probing. There's that thunk, thunk, thunk of shovels again.

TEDxSydney could organise a remarkable memorial event. They could gather together some of the great disabled thinkers of our time and hold a 'TEDxSydney remembers Stella Young' event. They wouldn't even need to limit themselves to Australian thinkers, as modern technology means that we can deliver a talk at the Sydney Opera House while our body is in another country.

But instead they want to ditch the idea of remembrance and go with the idea of exploitation and harassment.

I can hear something scratching under the floor. I think TEDxSydney might have dug themselves a hole so deep that they've gone right through the centre of the earth and hit London.

01 May 2015

How many politicians does it take to throw 18% of the population under a bus? #BADD2015 #GE2015

This was written as part of Blogging Against Disablism Day 2015.

This time 18 years ago I was so ridiculously full of fucking hope.

Being born 13 days after Thatcher moved into Downing Street I'd only ever known Conservative rule. All I knew was a life of being broke and shat on by the political class.

But in the run up to the 1997 general election - with my naive teenage optimism - I was so excited at the prospect of Labour swooping in and making life better. And God I was pissed that I couldn't vote. Like I said, I was born 13 days after Thatcher came to power, which means that on May 1st 1997: I was 16 days too young to vote. But I had the front bedroom in our house and duly stuck a "Vote Labour" poster in my window.

Labour had done great things in the past: The NHS, the welfare state and council housing in the 40s. In the 70s they gave us Attendance Allowance and Mobility Allowance which, in 1992, the Tories merged into Disability Living Allowance. (The Tories like to claim they "created" DLA: It's a lie. They just took 2 existing allowances and rolled them into one unified benefit with one application form.) I wanted Labour to continue to make life better for people in similar shoes to my own.

I was a fucking fool.

They swiftly got rid of grants for living costs during university. Had I gone to university in September 1997 when I was 18 I'd have gotten a grant. But I didn't go to uni until 2000, and by that time they'd abolished the grants that they took for granted (ha!) during their own education. The Student Loans Company was a Thing.

Coming from a family with zero money they couldn't support me so I couldn't eschew loans and live off Mum and Dad. Coming from a family with zero money I was eligible for the maximum amount of student loan; which also meant maximum debt. Thanks for the financial ball and chain Tony.

Then, in 2008, Labour gave us the brutal Employment & Support Allowance to replace Incapacity Benefit for people too ill to work. Instead of developing a progressive social security system that improved the lives of the people Labour had historically helped in the past: They actually regressed the welfare state.

Sure, Labour weren't completely without their merits. They brought in Education Maintenance Allowance, they slightly beefed up the Disability Discrimination Act in 2005, and they introduced Civil Partnerships. But cancelling student grants, bringing in tuition fees, and torturing people who are too ill to work is hardly what you'd expect of a party that's supposed to represent the Labour movement.

Now we're in 2015 and there isn't a speck of hope or enthusiasm anywhere within me.

This entire election campaign is built on "who can be the most disablist?" Because shitting on disableds is fashionable and apparently a guaranteed vote winner. Latentexistence had a look at one of Cameron's remarks about life on benefits over at WtB while DavidG had a look at some of the party manifestos. Which saves me a bit of trouble, although David skipped Labour and Green (a bit like Hull City Council).

In Labour's 'disability manifesto' they say they want to "ensure disabled people have a voice at the heart of government." Listening to disabled people and hearing our voices is something they've talked about a lot. They're so busy talking about wanting to listen to us that they're not actually listening.

Disabled people have been saying that we want the Independent Living Fund saved, Labour will close it.

Disabled people have been saying that we want DLA restored with the lower rate care component and the walking distance for qualifying for the high rate mobility component set at 50 metres. Labour will keep PIP and their only related pledge is to fix the backlog.

Disabled people have been saying that they want the toxic Work Capability Assessment scrapped and a fair assessment of a person's fitness for work brought in. Labour are going to keep the WCA and just tinker around the edges a bit. The most hilariously insulting proposal is that they're going to give us information about how our condition affects our ability to work; like disabled people aren't already aware of what we are and are not capable of.

Yes, Labour are better than the other big party. They're going to axe the bedroom tax, "pause" (not halt) Universal Credit, and in their disability manifesto they say they're going to "review" the coalition's cut to Disabled Students' Allowance. But given the cuts they're not going to reverse, it's clear they're not standing up for us. They're just less cruel than the alternatives.

They're basically trying to straddle the disablism line. Hitting disabled people with enough cuts to try and appeal to some Tory/UKIP voters, while throwing us one or two bones to try and win our votes too.

Then there's the Greens. So much of what they say is so right. They're the only party that's pledged to save the ILF, and all sorts of other good stuff.

But if you think their pledge to legalise voluntary assisted suicide was frightening; one of their health policy pledges is enough to scare the shit out of anyone whose life sucks. Or could be considered to suck by medical professionals.

It's hard to tell you what number that health policy pledge is, because it keeps changing. It was HE347, but on their website currently it's HE524. Anyway, this is it:

Screengrab of some text that says 'HE524 The Green Party recognises that medical decisions taken towards the end of a person's life should never be undertaken lightly. We believe that when the quality of life is poor (e.g. due to severe dementia) life prolonging treatments such as influenza vaccines and antibiotics should not be given routinely without consideration of the whole situation including the wishes of the patient and relatives.'

The wishes of the patient and family should be taken "into consideration"? Fuck that shit. If someone with a "poor quality of life" has a treatable condition like a chest infection, and they want treatment, they should be entitled to treatment. Period. Doctors are pretty bad at judging the quality of life of disabled people. They'd probably judge the quality of life of a ventilator-dependent person as "poor", when actually that person might have a brilliant job and family life and generally be really bloody happy.

Anyone who wishes to refuse medical treatment has that option. If someone terminally ill wants to expedite their death by refusing treatment for something treatable; they already have that right. This policy basically comes down to giving doctors the right to refuse to treat anyone whose life they consider to be poor.

I'm left-wing. I should be a natural Labour or Green voter. Labour should be properly anti-austerity and true to their roots. The Greens shouldn't have fucked up proposals about wanting to withhold life saving care.

I haven't explored the Tory, UKIP or Lib Dem disablism. I was going to, but David beat me to it. Needless to say: I won't be voting for any of them.

All this hate has had me in a serious depression of late. People who follow me on social media might have noticed I've been around a lot less lately, but that's because I just can't face it. Every time I turn on my computer I'm just faced with the constant stream of stuff about the election and it's crushing my soul. Life really fucking sucks if you're disabled in the UK right now. This time next week we'll either have a Labour PM who's going to axe the bedroom tax, but won't do anything else to make life better. Or we'll be stuck with fuckface and his smug chums for another 5 years and things will be a hell of a lot worse.

The ideal outcome from this election would be a rainbow-left coalition. The SNP, Plaid Cymru and the Greens would force Labour to the left of their current position, and hopefully Labour and the SNP would veto any of the Greens' kookier ideas. But Labour have ruled out a deal with the SNP and the Greens have ruled out a deal with Labour. So the very best week can hope for is "getting rid of the bedroom tax and everything else staying as shit as it's on course to be anyway."

So I've been burying my head in the sand. Trying to avoid it all because I just can't deal with the fact that life isn't going to get better than this. The first thing I do when I get up in the morning is check the late-night TV schedule to plan what I'm going to watch while getting ready for bed. That's literally all I have to look forward to of a day: The day ending again. And inbetween times I've been watching a hell of a lot of Criminal Minds: Because fictional serial killers are less bleak and depressing that real-life politicians.