When I was a teenager, swimming was a massive part of my life. And through it all, I was keeping a massive secret.
I loved doing really long distance training sessions. Partly because distance freestyle was what I was best at, but mostly because it gave me time - slogging up and down the pool - almost alone with my thoughts. I say "almost alone" because, obviously, there were dozens of people all around me. But you only get to interact with them once every 400 metres or so. So you're alone with your thoughts despite being surrounded by people.
How would I tell people I was gay? Should I even tell people I was gay? What would happen if I did tell people? Would people be really uncomfortable about me in the changing rooms?
I didn't know any openly gay swimmers. At all. Not in my swimming team, not anywhere.
There was an openly gay teacher in the area who was very well known among the whole swimming community. And I heard the things people said about her behind her back.
She had me sussed out before I'd told a soul on this earth. She was my course tutor when I qualified as a swimming teacher and one day we were watching a video of a male Olympian doing technically flawless breaststroke. The 4 other women on my course were going "oh he's so hot." And I said "eh, he's not my type." She totally shot me that "yeah, I know" look.
Coming out is hard. But coming out in sport is even harder.
Although this was the 90s and there was less LGBT visibility back then, I had a pretty good idea that most of my other friends from outside sport would be totally cool.
I was way more worried about telling people from swimming.
One day my coach said to me "I think you're a bit of a closet hippie."
I just laughed because I so wanted to say "that's not the only thing I'm in the closet about."
But I didn't say it, obviously.
Almost 20 years later there are a few openly gay athletes, including Olympians and Paralympians, but surprisingly few compared to other arenas of life. So young aspiring athletes are still probably ploughing up and down swimming pools or running round tracks wondering "what's going to happen if I tell people?"
Which brings me onto Tyson Fury. A man who looks and sounds like he went "wait a minute: I can actually make a living out of punching people in the face? Awesome!"
Yes, he's currently the world champion at punching people in the face. Which must take a lot of practice at punching people in the face.
Being world champion at anything takes hard work and skill, whether your personal beliefs are harmful or not. It's a shame that being good at a thing also gives you a platform from which to vomit your homophobic and misogynistic views, but apparently it does.
And I'm not going to argue that he shouldn't be allowed to compete in the ring because of the things he says out of the ring; however dispiriting his presence in the sport may be to young LGBT boxers fighting with themselves over whether or not to come out.
But the BBC's Sports Personality of the Year - as the name suggests - isn't just about being a talented athlete. It's about being a sporting personality. And his personality is a cruel, toxic, one. Now matter how talented an athlete he is.
The BBC have refused to remove him from the shortlist of contenders (though they did suspend a gay man who criticised him). But here's the thing: The award isn't pre-determined; it's open for public vote.
The British public can tell everyone that "we don't support personalities this hateful," by voting for anyone but him. Of course, there are 11 other nominees and if all anti-Fury votes are evenly distributed among them; he might still win. So dare I suggest that we all back Jess Ennis-Hill; the subject of some of his misogynistic bile?
The way to show young LGBT people - especially young LGBT athletes - that it's OK to be who you are, and no-one agrees with Fury is to vote against him. So please do. And just maybe a few young LGBT sportspeople coming to terms with who they are will feel a little more embraced knowing Fury got shat on by a whole country of voters.
10 December 2015
16 October 2015
Being Alone
I know from past experience that there's no faster way to lose friends than to talk about your mental health; but I'm going to anyway. Because I just can't help but think how many of us would be less depressed or less afraid if our society was just... Better.
I mean there's the obvious: People who depend on help from the state are fucking terrified because social security is no longer secure.
But my anxiety/panic lately has been about way more than just money. And I just keep thinking "I wish I had someone to hold me and tell me everything will be alright." But I don't.
I don't necessarily mean a partner. It's perfectly possible for a platonic friend to hold you and make you feel safe.
I know the show was massively unrealistic in a number of ways; but I keep thinking of Friends. Let's use Phoebe as an example. If she'd had a weekend of panic attacks and needed someone to stay with her all night to make her feel safe; you know that one of the other 5 would have obliged. Because they were close friends.
I was incredibly lucky on Sunday when I was panicking that one of my neighbours was home so she sat and watched Downton Abbey with me for a little while. But a couple of days later my cat was ill again and I posted on Facebook asking, once again, if anyone was free and no-one replied. (Luckily after I got home from the vet I wasn't as anxious as I expected I would be when she first started pissing blood again.)
The reason I'm writing this isn't because I want pity. Or I want attention. Or anything about me really.
Surely I can't be alone in being alone.
There must be thousands of people - maybe hundreds of thousands of people - who are in my shoes: No partner, no children, no siblings, no mother, no friends they see regularly. People who got left out and left behind when their friends from the past all got careers, got married, started families. Or even people who have got careers, but see no-one outside of work.
And I'm writing this from the fairly privileged position of someone with an internet connection and quite a few social media contacts who've offered to be there for me via Skype. (Although today's been one of those days when I've felt like I'm Tweeting/Facebooking/blogging into a void and no-one's listening at all.)
How did people like me end up on the scrapheap of life? And how can we fix society so we aren't so alone?
How many people have to do what I did this week and see a doctor having a panic emergency; when we wouldn't have been in a state of panic if we only had people around us that made us feel safe? This time last week I was on the phone to The Samaritans just because I was terrified and didn't know who else to talk to.
Sure, maybe someone holding me and reassuring me wouldn't have made any difference and I'd still need medical help; mental illness isn't totally socially created. But our social structures matter in how we think and feel. Just like poor housing has a negative impact on your physical health; poor social networks have an impact on your mental health.
And I'm not talking about setting up some formal, professional, support group for those of us that society likes to avoid. Or some condescending befriending scheme based on pitying the poor lonely people. I mean real social change so people like me are seen as real human beings with value that are worth spending time with.
I know it's idealistic: But why can't we live in a world where a group as diverse as a waitress, a chef, a masseuse, a frequently unemployed actor, a data-something-or-other and a palaeontologist can all be besties?
You'll have to forgive me talking about TV a lot; but my TV and my cat are the only support networks that I physically encounter every day. I sometimes go weeks - even months - without seeing other humans in a friendship capacity. Yes I see humans in their professional capacity as doctors, doctors' receptionists, pharmacists, vets, staff in shops, etc. But there's that professional boundary between us.
I don't know where I'm going with this ramble. I just know I'm not alone in being alone. It's not just us benefit scroungers at the bottom of society: Throughout all walks of life some people are isolated by circumstance. Because our world is fucked up, and I wish it wasn't.
I mean there's the obvious: People who depend on help from the state are fucking terrified because social security is no longer secure.
But my anxiety/panic lately has been about way more than just money. And I just keep thinking "I wish I had someone to hold me and tell me everything will be alright." But I don't.
I don't necessarily mean a partner. It's perfectly possible for a platonic friend to hold you and make you feel safe.
I know the show was massively unrealistic in a number of ways; but I keep thinking of Friends. Let's use Phoebe as an example. If she'd had a weekend of panic attacks and needed someone to stay with her all night to make her feel safe; you know that one of the other 5 would have obliged. Because they were close friends.
I was incredibly lucky on Sunday when I was panicking that one of my neighbours was home so she sat and watched Downton Abbey with me for a little while. But a couple of days later my cat was ill again and I posted on Facebook asking, once again, if anyone was free and no-one replied. (Luckily after I got home from the vet I wasn't as anxious as I expected I would be when she first started pissing blood again.)
The reason I'm writing this isn't because I want pity. Or I want attention. Or anything about me really.
Surely I can't be alone in being alone.
There must be thousands of people - maybe hundreds of thousands of people - who are in my shoes: No partner, no children, no siblings, no mother, no friends they see regularly. People who got left out and left behind when their friends from the past all got careers, got married, started families. Or even people who have got careers, but see no-one outside of work.
And I'm writing this from the fairly privileged position of someone with an internet connection and quite a few social media contacts who've offered to be there for me via Skype. (Although today's been one of those days when I've felt like I'm Tweeting/Facebooking/blogging into a void and no-one's listening at all.)
How did people like me end up on the scrapheap of life? And how can we fix society so we aren't so alone?
How many people have to do what I did this week and see a doctor having a panic emergency; when we wouldn't have been in a state of panic if we only had people around us that made us feel safe? This time last week I was on the phone to The Samaritans just because I was terrified and didn't know who else to talk to.
Sure, maybe someone holding me and reassuring me wouldn't have made any difference and I'd still need medical help; mental illness isn't totally socially created. But our social structures matter in how we think and feel. Just like poor housing has a negative impact on your physical health; poor social networks have an impact on your mental health.
And I'm not talking about setting up some formal, professional, support group for those of us that society likes to avoid. Or some condescending befriending scheme based on pitying the poor lonely people. I mean real social change so people like me are seen as real human beings with value that are worth spending time with.
I know it's idealistic: But why can't we live in a world where a group as diverse as a waitress, a chef, a masseuse, a frequently unemployed actor, a data-something-or-other and a palaeontologist can all be besties?
You'll have to forgive me talking about TV a lot; but my TV and my cat are the only support networks that I physically encounter every day. I sometimes go weeks - even months - without seeing other humans in a friendship capacity. Yes I see humans in their professional capacity as doctors, doctors' receptionists, pharmacists, vets, staff in shops, etc. But there's that professional boundary between us.
I don't know where I'm going with this ramble. I just know I'm not alone in being alone. It's not just us benefit scroungers at the bottom of society: Throughout all walks of life some people are isolated by circumstance. Because our world is fucked up, and I wish it wasn't.
10 October 2015
Pain and fear, fear and pain. #WMHD2015 #WorldMentalHealthDay
Trigger warning: This post contains discussions of fear and anxiety, medical negligence, animal illness, accidental injuries, suicidal ideation and general panickyness.
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:
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:
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...
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.
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:
TEDxSydney Impact issues an apology for #StellasChallenge http://t.co/3VqUkETg5G
— TEDxSydney (@tedxsydney) May 23, 2015(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:
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.
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:
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.
29 January 2015
Lucy
Another friend of mine died today. That's three in three months.
This time it was the wonderful Lucy Glennon.
I can't remember the first time I met her online; you repeatedly cross the paths of other Tweeters, writers, activists, and friends of friends until you get to know that person. But I do remember the first time I met her in real life. It was at the Hardest Hit march in London.
The gathering point for the start of the march was on the Embankment. I was heading east to west to meet my friends Mandy and Lou, and I saw Lucy go past heading south to north about 75 yards in front of me. I recognised her immediately from photos I'd seen of her online. I yelled out "Lucy!" in my sort-of female Brian Blessed boomy voice that can be heard for about half a mile. Her and the 2 people she was with all heard me and stopped, despite all the background noise. We only chatted for a few seconds because I was looking for Mandy and Lou, and she was heading towards the others from debra. I think the next time I saw her was at another Hardest Hit event, this time a static rally outside City Hall. The static nature meant neither of us were dashing around finding other people so we could sit and chat.
Considering we only lived about half a mile apart, we really didn't see each other as much as we should have. When I first met her she was living in an inaccessible block of flats, but eventually rent rises and benefit cuts meant she was forced to turn to the local council to be rehoused into a council flat. This also meant she got allocated a wheelchair accessible flat. She moved to the big new development in Kings Cross, into one of the first blocks of flats to be opened.
Every time I moaned about my flat being not accessible enough she would tell me that I should ask the council to be rehoused because they were building more accessible properties in the development she lived in, and it'd be so cool if we were neighbours. And it would have been cool to have a really great friend in the block of flats next door, but it wasn't to be. As nice as it would be to live in a better flat, moving is so crushing both mentally and physically that I just couldn't face it.
Lucy would often post information about EB on Twitter and Facebook (not to mention photos of her hanging out with people like Sean Bean and Damien Lewis at EB fundraising events) so I knew that life expectancy for people with it isn't great. And every time I read such things I knew that Lucy had reached an age where it was a worry as to how much time we had left with her. So I'd try to immediately put it out of my mind because I didn't want to think about a world without Lucy in it.
I considered sending a text to Lucy's phone, figuring her possessions are now in the hands of her family, to send them my condolences. But concluded that would be weird so didn't do it. I've only met her dad once and not any other members of her family.
I shall miss her greatly. She was a wonderful woman with a fantastic sense of humour. Every time I hear any mention of Game of Thrones and shall think of her and her adoration of the show.
This time it was the wonderful Lucy Glennon.
I can't remember the first time I met her online; you repeatedly cross the paths of other Tweeters, writers, activists, and friends of friends until you get to know that person. But I do remember the first time I met her in real life. It was at the Hardest Hit march in London.
The gathering point for the start of the march was on the Embankment. I was heading east to west to meet my friends Mandy and Lou, and I saw Lucy go past heading south to north about 75 yards in front of me. I recognised her immediately from photos I'd seen of her online. I yelled out "Lucy!" in my sort-of female Brian Blessed boomy voice that can be heard for about half a mile. Her and the 2 people she was with all heard me and stopped, despite all the background noise. We only chatted for a few seconds because I was looking for Mandy and Lou, and she was heading towards the others from debra. I think the next time I saw her was at another Hardest Hit event, this time a static rally outside City Hall. The static nature meant neither of us were dashing around finding other people so we could sit and chat.
Considering we only lived about half a mile apart, we really didn't see each other as much as we should have. When I first met her she was living in an inaccessible block of flats, but eventually rent rises and benefit cuts meant she was forced to turn to the local council to be rehoused into a council flat. This also meant she got allocated a wheelchair accessible flat. She moved to the big new development in Kings Cross, into one of the first blocks of flats to be opened.
Every time I moaned about my flat being not accessible enough she would tell me that I should ask the council to be rehoused because they were building more accessible properties in the development she lived in, and it'd be so cool if we were neighbours. And it would have been cool to have a really great friend in the block of flats next door, but it wasn't to be. As nice as it would be to live in a better flat, moving is so crushing both mentally and physically that I just couldn't face it.
Lucy would often post information about EB on Twitter and Facebook (not to mention photos of her hanging out with people like Sean Bean and Damien Lewis at EB fundraising events) so I knew that life expectancy for people with it isn't great. And every time I read such things I knew that Lucy had reached an age where it was a worry as to how much time we had left with her. So I'd try to immediately put it out of my mind because I didn't want to think about a world without Lucy in it.
I considered sending a text to Lucy's phone, figuring her possessions are now in the hands of her family, to send them my condolences. But concluded that would be weird so didn't do it. I've only met her dad once and not any other members of her family.
I shall miss her greatly. She was a wonderful woman with a fantastic sense of humour. Every time I hear any mention of Game of Thrones and shall think of her and her adoration of the show.
04 January 2015
Pics or it didn't happen
Today I coughed, and then I screamed in pain.
It's now 9 days since I wrecked my shoulder.
I did it on Boxing Day. On the 27th I managed to escape from the arse-end of nowhere and get back to London so I could go to my local A&E. It really wasn't much better.
I arrived, was seen by the triage nurse, and was sent to x-ray in only a few minutes. Well, the triage nurse pulled a doctor aside and said "she's crying in pain." I wasn't really. I was crying because:
But I didn't bother to shout after her and correct her.
I initially stopped by the seats outside x-ray, and continued facing the direction I was facing anyway. But I became aware of the flow of air as people walked close to my shoulder and turned around so my good shoulder was facing outwards before someone knocked it.
I had 3 x-rays taken this time. I heard a voice bellow along the corridor "it isn't dislocated" and knew they were talking about me. (I never, for a second, thought it was dislocated.) I was then swiftly downgraded from A&E to the Urgent Treatment Centre.
I really wasn't sat there very long before I got called in by a doctor. I once again told the story of what happened, "no, I didn't fall over," blah, blah. You know all that from my last post. The doctor looked at my x-ray, came back and told me that he couldn't see any fractures. And proceeded to treat me like I had a small bruise. Unlike my dad's local A&E they were polite about it, but still didn't care. "Urgent treatment centre" is a bit of a misnomer if all they do is pull you aside for a "there's nothing wrong with you" talk.
Well, they gave me a prescription for some 30/500 co-codamol and offered me a sling.
I'd already explained to him that osteogenesis imperfecta most famously affects bones, but actually it affects every single tissue in the body containing type 1 collagen. Which is every tissue in the body. Tendons, ligaments, muscles, blood vessels, even skin. All affected. But as I said in my last post; doctors think if you've got OI and not broken a bone, there can't actually be anything wrong with you at all. Explained it to him, all of it.
He said that if I couldn't manage at home, they could admit me until I got some social care.
"If you admit me, will that get me an MRI and a diagnosis?"
"An MRI wouldn't show us any more detail than we can see on the x-ray."
"You can't see soft tissue on an x-ray."
Even when you waste your breath explaining that OI doesn't just affect bones (something they should have learned in medical school), they still don't listen.
"Well, no, we wouldn't. We'd literally just keep you here until you got some social care."
"Right, I'm going home then."
Every time break my toes I'd be eligible for medical care, but I don't bother wasting my time or their money because I can strap it up myself and it's not like they're particularly painful unless you try wearing shoes.
When I actually needed medical care and asked for it, I was treated like I had a bit of a cramp.
When I snapped a rib gardening I didn't need to call an ambulance. I packed up my gardening supplies, came inside, took painkillers, waited for them to work, then cooked my dinner. The next day I went shopping, which entailed lifting my wheelchair in and out of my car. Didn't need medical care, even though I'd have been eligible for it.
I haven't left my flat since I got home from the hospital that night because I can't drive my car or push my wheelchair. I can only prepare foods that can be made one-handed. But I'm not eligible for medical care because it doesn't show up on an x-ray.
When I fracture the little bones in my hands and feet (which I usually do a couple of times a year) I usually just say "fuck", tape it up, and carry on with what I was doing.
When I got home from the hospital on the 27th I tried moving my arm to put talc in my armpit and screamed so loud I woke my hard-of-hearing upstairs neighbour. But I'm "lucky" to have "just a soft tissue injury" according to medical "professionals".
I wish I'd got the memo where it was decided by the NHS that policy is "pics or it didn't happen." Which is really what's going on here. If it can't be seen on an x-ray, it's not real. Or at the very worst it's just a small bruise.
Even if you can't move your arm.
Even if you can't drive your car.
Even if you can't push your wheelchair.
Even if you can't wipe your arse with your dominant hand.
Even if you scream at the pain in your shoulder when you cough. When a broken rib didn't make you scream like that upon coughing.
Pics or it didn't happen.
I had really wanted to go and see Neville's Island during it's final week. An organisation that owed me an apology were going to buy me tickets too. Cracking cast: Adrian Edmondson, Neil Morrissey, Robert Webb and Miles Jupp.
Couldn't go. Obviously. Like I said; I haven't left the house since I came home from the hospital. I'll remind you that after breaking a rib I got myself to Westfield the next day. Went to FrightFest about 10 days later, and even managed to cram my broken rib into a bra for that outing.
I was really upset about not being able to go. But "luckily" there's nothing wrong with my shoulder right now.
While 2 A&E departments were collectively as helpful as a shit in a sock, I've had wonderful friends come to my rescue. I especially have to say thanks to Liz & Jo who:
* Arranged for someone to drive my car back to London from Hell.
* Came and rescued me from my local hospital (and gave me a bag of Christmas presents while doing it).
* And Jo went back to the hospital the following day during pharmacy opening hours to get the co-codamol that the "urgent treatment centre" prescribed.
I would literally still be crying in Clacton if it weren't for them.
I often go months without seeing anyone. But my friends have been great these last 9 days. Someone else came by to grate some cheese for me to make one-handed cooking a bit easier. (Lactofree don't sell pre-grated cheese.) Another friend is swinging by tomorrow to throw some rubbish out for me.
Now, if you'll excuse me. I'm going to go and have a bath. It takes me nearly 2 fucking hours to get dressed again afterwards.
It's now 9 days since I wrecked my shoulder.
I did it on Boxing Day. On the 27th I managed to escape from the arse-end of nowhere and get back to London so I could go to my local A&E. It really wasn't much better.
I arrived, was seen by the triage nurse, and was sent to x-ray in only a few minutes. Well, the triage nurse pulled a doctor aside and said "she's crying in pain." I wasn't really. I was crying because:
But I didn't bother to shout after her and correct her.
I initially stopped by the seats outside x-ray, and continued facing the direction I was facing anyway. But I became aware of the flow of air as people walked close to my shoulder and turned around so my good shoulder was facing outwards before someone knocked it.
I had 3 x-rays taken this time. I heard a voice bellow along the corridor "it isn't dislocated" and knew they were talking about me. (I never, for a second, thought it was dislocated.) I was then swiftly downgraded from A&E to the Urgent Treatment Centre.
I really wasn't sat there very long before I got called in by a doctor. I once again told the story of what happened, "no, I didn't fall over," blah, blah. You know all that from my last post. The doctor looked at my x-ray, came back and told me that he couldn't see any fractures. And proceeded to treat me like I had a small bruise. Unlike my dad's local A&E they were polite about it, but still didn't care. "Urgent treatment centre" is a bit of a misnomer if all they do is pull you aside for a "there's nothing wrong with you" talk.
Well, they gave me a prescription for some 30/500 co-codamol and offered me a sling.
I'd already explained to him that osteogenesis imperfecta most famously affects bones, but actually it affects every single tissue in the body containing type 1 collagen. Which is every tissue in the body. Tendons, ligaments, muscles, blood vessels, even skin. All affected. But as I said in my last post; doctors think if you've got OI and not broken a bone, there can't actually be anything wrong with you at all. Explained it to him, all of it.
He said that if I couldn't manage at home, they could admit me until I got some social care.
"If you admit me, will that get me an MRI and a diagnosis?"
"An MRI wouldn't show us any more detail than we can see on the x-ray."
"You can't see soft tissue on an x-ray."
Even when you waste your breath explaining that OI doesn't just affect bones (something they should have learned in medical school), they still don't listen.
"Well, no, we wouldn't. We'd literally just keep you here until you got some social care."
"Right, I'm going home then."
Every time break my toes I'd be eligible for medical care, but I don't bother wasting my time or their money because I can strap it up myself and it's not like they're particularly painful unless you try wearing shoes.
When I actually needed medical care and asked for it, I was treated like I had a bit of a cramp.
When I snapped a rib gardening I didn't need to call an ambulance. I packed up my gardening supplies, came inside, took painkillers, waited for them to work, then cooked my dinner. The next day I went shopping, which entailed lifting my wheelchair in and out of my car. Didn't need medical care, even though I'd have been eligible for it.
I haven't left my flat since I got home from the hospital that night because I can't drive my car or push my wheelchair. I can only prepare foods that can be made one-handed. But I'm not eligible for medical care because it doesn't show up on an x-ray.
When I fracture the little bones in my hands and feet (which I usually do a couple of times a year) I usually just say "fuck", tape it up, and carry on with what I was doing.
When I got home from the hospital on the 27th I tried moving my arm to put talc in my armpit and screamed so loud I woke my hard-of-hearing upstairs neighbour. But I'm "lucky" to have "just a soft tissue injury" according to medical "professionals".
I wish I'd got the memo where it was decided by the NHS that policy is "pics or it didn't happen." Which is really what's going on here. If it can't be seen on an x-ray, it's not real. Or at the very worst it's just a small bruise.
Even if you can't move your arm.
Even if you can't drive your car.
Even if you can't push your wheelchair.
Even if you can't wipe your arse with your dominant hand.
Even if you scream at the pain in your shoulder when you cough. When a broken rib didn't make you scream like that upon coughing.
Pics or it didn't happen.
I had really wanted to go and see Neville's Island during it's final week. An organisation that owed me an apology were going to buy me tickets too. Cracking cast: Adrian Edmondson, Neil Morrissey, Robert Webb and Miles Jupp.
Couldn't go. Obviously. Like I said; I haven't left the house since I came home from the hospital. I'll remind you that after breaking a rib I got myself to Westfield the next day. Went to FrightFest about 10 days later, and even managed to cram my broken rib into a bra for that outing.
I was really upset about not being able to go. But "luckily" there's nothing wrong with my shoulder right now.
While 2 A&E departments were collectively as helpful as a shit in a sock, I've had wonderful friends come to my rescue. I especially have to say thanks to Liz & Jo who:
* Arranged for someone to drive my car back to London from Hell.
* Came and rescued me from my local hospital (and gave me a bag of Christmas presents while doing it).
* And Jo went back to the hospital the following day during pharmacy opening hours to get the co-codamol that the "urgent treatment centre" prescribed.
I would literally still be crying in Clacton if it weren't for them.
I often go months without seeing anyone. But my friends have been great these last 9 days. Someone else came by to grate some cheese for me to make one-handed cooking a bit easier. (Lactofree don't sell pre-grated cheese.) Another friend is swinging by tomorrow to throw some rubbish out for me.
Now, if you'll excuse me. I'm going to go and have a bath. It takes me nearly 2 fucking hours to get dressed again afterwards.
