Life, the universe and everything tried to stop me from making it yesterday. From nose bleeds to parking nightmares, I had it all go wrong. I was tempted to just declare "fuck it" and go back to bed (having only managed 3 hours sleep. Not cos I was doing anything fun; I just laid there staring at the ceiling all night). And once I arrived at Congress House I spent most of the day on the verge of a temper tantrum and wishing I had spent the day sleeping.
The first time I heard anyone mention the word "disability" was during the "does the left lead online?" session at 3:30pm. I could've kissed Laurie Penny for bringing up the fact that Labour abolished Incapacity Benefit and talking about the online grassroots disability movement.
This was after I'd spent hours listening to members of other discriminated-against groups tell me that their group was the hardest hit of all.
Now, some of those groups are groups that I also belong to (women, LGBT, working class) so I absolutely understand that they/we are disproportionately hit when you compare us to straight, white, middle class men. But to claim that those groups are the hardest hit group is just not true.
For example; I listened to Dianne Abbott talk about how women and people from a minority ethnic background will be the hardest hit by the cuts. She talked about how people from those groups are more likely to be made redundant because they're more likely to work in the public and voluntary sectors. The same is true of disabled people and for the same reasons; employers in the public and third sectors are slightly less likely to be discriminatory.
But in addition to being likely to lose their jobs due to redundancies in the public sector and funding cuts to the voluntary sector, disabled employees in those sectors are likely to have to quit work due to Access to Work cut backs. Disabled people are also facing cuts to their care packages (which may result in having to give up work due to not having someone to get you out of bed of a morning!) and loss of their DLA.
Abbott also talked about how women and black and minority ethnic folks are more likely to live below the poverty line. This is also true for disabled people. But on top of the current levels of poverty disabled people are facing the prospect of having to pay even more towards their care, losing their incapacity benefit due to the brutal new assessment measures and losing their DLA. People already have to pay more on being disabled than they get back in the form of DLA.
I am not, at all, suggesting that I think that other minorities will not be hit hard. I'm just starting to get annoyed with non-disabled people claiming their group will be hit "hardest" when that is not the case because disabled people experience the same issues but with some extra crap on top.
The complete absence of disability issues from the panels infuriated me too. Why weren't Transport for All represented on the panel talking about transport? Why weren't DPAC, The Broken of Britain or Where's the Benefit represented on the panel about how we're not all in this together? That disabled people are not only being cruelly hit by the cuts but also excluded from discussions about the cuts reminds me of a post I wrote last year about us being the lowest of the low, and something I wrote more recently about how anti-cuts campaigners prefer books and trees to us.
As I said, the session about the left online improved my mood massively. Not only was there an acknowledgement that disabled people exist, I also had a good conversation afterwards with some UKUncutters (apparently my reputation is starting to precede me).
Then there was the final plenary session. I may be utterly furious with the Labour party for not only the recent history in which they scrapped IB and gave us ESA, but also their ongoing support for the coalition cuts to DLA; but I still intend to vote for Livingstone because the improvements he made to the accessibility of London's transport had such a positive impact on my life. However even he managed to piss me off more than somewhat with his closing speech: He talked about how equal London is in term of race, religion and sexual orientation, but how unequal London is in terms of class and wealth. I think it says something about the inequality of disabled people that we didn't even get a namecheck.
I would love to live in a progressive London. Somehow I don't see that happening any time soon when London's so-called progressives turn up to Progressive London denying the existence of around 18% of the population.
20 February 2011
18 February 2011
P and enforced sterilisation
People who've been reading this blog for years (yes, both of you) might remember that the subject of whipping the wombs out of disabled young women is something I've written about before: First there was Ashley X and then Katie Thorpe.
There's been another case in the news this week, that of the woman known only as "P". This case is a bit different to the previous two mentioned: In those the parents basically just wanted to prevent their child from growing up because disabled children are cute while disabled adults are icky. In this case it's about attempting to prevent P from the heartbreak of having children taken into care. So I have a little more sympathy for what P's parents are trying to do, even though I think sterilisation against P's will is wrong.
The issue at heart is one of poor social care. P wants a big family, her parents don't want P to have lots of children only for them to be taken into care but her parents don't have the capacity to support her in raising more than 2 children.
My parents are/were (mum died a couple of years ago) disabled. They had different types of impairments to P; they both have/had physical impairments while P has learning difficulties. But the end result is still the same; they needed assistance to raise a child and run a household.
My parents needed support with physical things like cleaning, lifting heavy saucepans and carrying the shopping in from the car. I'm assuming P needs help with understanding managing domestic tasks, planning recipes and managing a shopping list. At the end of the day both sets of parents require help with housework, cooking and shopping. So why did my parents get a care package from social services but P has to live with her parents to get the support she needs 'Big Society' style? Especially when her parents have a limit on what support they can provide and that's at odds with what P herself wants?
I think it's horrific that we're living in a time when the state would rather spend money on a court case in which the future of a women's uterus is decided and potentially surgery against her will; rather than spending the money on social care to allow that woman to live the life she wants to live and have the family she wants to have.
There's been another case in the news this week, that of the woman known only as "P". This case is a bit different to the previous two mentioned: In those the parents basically just wanted to prevent their child from growing up because disabled children are cute while disabled adults are icky. In this case it's about attempting to prevent P from the heartbreak of having children taken into care. So I have a little more sympathy for what P's parents are trying to do, even though I think sterilisation against P's will is wrong.
The issue at heart is one of poor social care. P wants a big family, her parents don't want P to have lots of children only for them to be taken into care but her parents don't have the capacity to support her in raising more than 2 children.
My parents are/were (mum died a couple of years ago) disabled. They had different types of impairments to P; they both have/had physical impairments while P has learning difficulties. But the end result is still the same; they needed assistance to raise a child and run a household.
My parents needed support with physical things like cleaning, lifting heavy saucepans and carrying the shopping in from the car. I'm assuming P needs help with understanding managing domestic tasks, planning recipes and managing a shopping list. At the end of the day both sets of parents require help with housework, cooking and shopping. So why did my parents get a care package from social services but P has to live with her parents to get the support she needs 'Big Society' style? Especially when her parents have a limit on what support they can provide and that's at odds with what P herself wants?
I think it's horrific that we're living in a time when the state would rather spend money on a court case in which the future of a women's uterus is decided and potentially surgery against her will; rather than spending the money on social care to allow that woman to live the life she wants to live and have the family she wants to have.
06 February 2011
Hollywood Images of Disability
Hat tip to Wheelie Catholic for posting this video.
Edit 16/3/11: The video has been deleted from Vimeo. :-(
Hollywood Images of Disability (CHF EDIT) from salome chasnoff on Vimeo.
Edit 16/3/11: The video has been deleted from Vimeo. :-(
02 February 2011
SPOILER WARNING: Handle with Care by Jodi Picoult
The back of the book blurb essentially says that the book is about the parents of a kid with OI who decide to sue their obstetrician for "wrongful birth" in order to pay Willow's medical bills.
After the jump spoilers will abound. So if you haven't read it and don't want to be spoiled, don't read on.
After the jump spoilers will abound. So if you haven't read it and don't want to be spoiled, don't read on.
06 January 2011
Why I'm not surprised that no-one helped Simone Back
You've probably read about Simone Back by now. It seems there's a global wondering of how people could possibly ignore a suicide note. The world seems stunned that no-one helped her as she lay dying after so publicly declaring that she'd ODed.
I think it's so desperately sad that no-one came to her aid, but I can't even feign a bit of surprise that people bitched about her rather than saving her because I know what it's like to be unwell and for people to become desensitised to you mentioning it. For the most part my own health problems are physical rather than mental but I think the principal is the same across all illnesses of whatever type.
When Simone posted the words "Took all my pills be dead soon bye bye everyone," one of her "friends" replied with:
"She ODs all the time and she lies."
Now I don't know Simone, I've never met her. I only know what I've read in a few news articles. But that cold, unfeeling sentence from one of her "friends" would suggest that Simone has attempted suicide in the past and was quite open about it.
When you talk about your ill health all the time, be it mental or physical, people seem to stop giving a shit after a while. Like you're a broken record and the disjointed tune will remain the same no matter what intervention so people just ignore that track and wait for the next one. Except in the online worlds of Twitter and Facebook it's not like you've got to wait for the dodgy track to play out to get to the next song like you did with vinyl or tapes: Twitter and Facebook are more akin to mp3 players and you can just scroll past the corrupt song onto the next one.
So when I mention feeling unwell my online friends don't respond with concern anymore, they just scroll past onto the next update; me mentioning my shitty health is the TwitBookSpace equivalent of that corrupt file in your iTunes library.
I've been having a bad day today. Earlier in the week I had a reminder of what my life used to be like when I had that precious thing called health. While I had a fun evening out on Tuesday it has since got me contemplating all the things I've lost and the things I had the potential to be which are now dreams that'll never be realised. That contemplation made me cry. My body is constantly on the lookout for any excuse to hurt and via a couple of degrees of separation the emotional upset ended up causing me physical pain.
My tweets are set up to automatically update my Facebook status. So this morning when I tweeted that I was having a bad day that fact was broadcast to my 407 Twitter followers and 376 Facebook friends. The number of people that replied? 3. Two Facebook friends I know IRL and one Twitter follower who's only just started following me so is therefore presumably not sick to the back teeth of me moaning yet.
A couple of hours, one nap and many drugs later I tweeted that I'd managed to cry myself into physical pain. This time it warranted even less of a response: Just the one person who I only met last month said that she was sorry to hear I was having a sucky time. Again, I'm sure that once she's known me for more than three weeks she too will lose interest in me feeling rough.
I think stereotypical British stoicism is part of the problem. We're not supposed to talk about negative feelings, whether they be physical or mental. On Tuesday I had a brief conversation with someone I haven't seen for over 5 years: Since before I became "ill" (I've always had a shitty skeleton but there's a difference between "illness" and "impairment". Until 5.5 years ago I was mobility impaired but free from illness). She's doesn't know anything about me other than that I have a very loud laugh, but in the polite and conversational way that you do she asked on Tuesday "how have you been?"
I actually had to pause for a minute. "Do I answer honestly or do I just say what you're supposed to say which is 'fine'? She doesn't know me so doesn't need to hear my shit. But on the other hand I hate lying..." I opted for just shrugging because I couldn't bear to deviate from the social norm enough to say "not at all well actually." Except I did then explain that I'd been ill because I suck at keeping my trap shut.
With social rules dictating that we're not even supposed to answer "how are you?" honestly unless the answer is positive it's not entirely surprising that there is such a backlash against people like Simone who'll publicly state "I hurt" rather than keeping their British stiff upper lip.
I'm not going to pretend that I'm above the social rules and desensitisation. I have Twitter and Facebook friends with painful diagnoses and I don't reply every time they say "sneezed and broke a rib" or "dislocated my shoulder relocating my knee." I've rolled my eyes at friends who always cry when they're drunk because with inhibitions lowered the stiff upper lip falters and their sadness slips out. I'm not proud of it, but sometimes you don't want to listen to that dodgy mp3 and you want to listen to a new song you've never heard before. Or at least you want to listen to a song that'll play without scritching.
Then there are those who will criticise you for being open about how you're feeling. Those who'll attack you for complaining about feeling crappy. You wouldn't believe the number of times as a child I was told to shut the fuck up screaming about my broken bones because my distress would upset other people. The TwitBookSpace equivalent I guess would be unfriending/blocking someone for being honest about how they feel, giving a bitchy remark as a parting shot. Or deleting that corrupt file from your iTunes library.
When it comes to mental health we, as a culture, want to hear about it even less than physical health. If people are going to ignore me moaning about being in physical pain you can be sure they'll steer well clear of someone moaning about being in emotional pain. And if people can react with hostility to a cute small child screaming because they've got 3 freshly broken long bones and no painkillers in their system is it really surprising that people are hostile to someone saying "I'm killing myself"?
When it comes to talk of suicide we typically have 2 responses:
I find it greatly alarming that we get a lot of anonymous commenters on WtB talking about how they plan to kill themselves if/when they lose their benefits. Sadly we have heard from people who don't believe those people actually are planning to kill themselves because of the myth that genuinely suicidal people don't talk about it.
As for point 2, I have an example in mind. Just before Christmas the wonderful Incurable Hippie read this article and started begging people in the Oxford area via social networks to go down to Wolvercote lock and take Mr Payne warm clothes and food and a puncture repair kit because being in Sheffield she wasn't in a position to physically help him herself.
Someone she asked refused to retweet the link because Mr Payne was suicidal and he felt that Mr Payne's aid should only come from The Professionals. I'm pretty sure that a thermos full of Heinz soup reheated by an amateur would've been satisfactory and that Payne didn't really need any food to be prepared by Jamie Oliver.
Yes, I do realise that the gentleman in question wasn't referring to pro chefs. But are we really that afraid of mental illness that taking hot soup to a cold depressed person is too scary? But taking soup to a cold person who's full of joie de vivre would be OK? Isn't it conceivable that if Mr Payne was treated like a human being instead of a social problem that he might not actually have been feeling suicidal in the first place?
We have a cultural thing about not talking about how we feel unless our feelings are all rainbows and sweeties. We ignore people who break that rule or are sometimes even hostile towards the social deviators. As a culture we have a big problem with people who'll speak out about feeling suicidal. Yet people are somehow still surprised that no-one rushed to Back's aid? Saddened, of course. But surprised? Really?
Edit: Just wanted to clarify that I don't think it's an internet problem; people have the same reaction in real life towards people who talk about illness regularly. I think it's more that ill people are supposed to be stoic about their pain and so those who do talk about it are castigated. If anything I think the problem is worse in real life: In my experience people actively avoid those who moan about their health all the time. Online people tend to just avoid the health-related updates rather than avoiding the ill person completely.
I also wanted to touch on the fact that every article I've read about Back quotes Graham Bell from the Brighton and Hove Depression Alliance as saying:
Really? Funny thing about illness is it makes you ill. When you're in too much pain to get out of bed, or when you're too depressed to get out of bed, or when you're too stoned on medication to get out of bed how the hell is one supposed to get out there and maintain real-life friendships? I frequently go weeks and weeks without talking to friends in person. If it weren't for my online social life I'd have no way of keeping in touch with people at all. In person friendships are great for those with the health to manage them but who am I going to forge RL friendships with from the confines of my flat?
I think it's so desperately sad that no-one came to her aid, but I can't even feign a bit of surprise that people bitched about her rather than saving her because I know what it's like to be unwell and for people to become desensitised to you mentioning it. For the most part my own health problems are physical rather than mental but I think the principal is the same across all illnesses of whatever type.
When Simone posted the words "Took all my pills be dead soon bye bye everyone," one of her "friends" replied with:
"She ODs all the time and she lies."
Now I don't know Simone, I've never met her. I only know what I've read in a few news articles. But that cold, unfeeling sentence from one of her "friends" would suggest that Simone has attempted suicide in the past and was quite open about it.
When you talk about your ill health all the time, be it mental or physical, people seem to stop giving a shit after a while. Like you're a broken record and the disjointed tune will remain the same no matter what intervention so people just ignore that track and wait for the next one. Except in the online worlds of Twitter and Facebook it's not like you've got to wait for the dodgy track to play out to get to the next song like you did with vinyl or tapes: Twitter and Facebook are more akin to mp3 players and you can just scroll past the corrupt song onto the next one.
So when I mention feeling unwell my online friends don't respond with concern anymore, they just scroll past onto the next update; me mentioning my shitty health is the TwitBookSpace equivalent of that corrupt file in your iTunes library.
I've been having a bad day today. Earlier in the week I had a reminder of what my life used to be like when I had that precious thing called health. While I had a fun evening out on Tuesday it has since got me contemplating all the things I've lost and the things I had the potential to be which are now dreams that'll never be realised. That contemplation made me cry. My body is constantly on the lookout for any excuse to hurt and via a couple of degrees of separation the emotional upset ended up causing me physical pain.
My tweets are set up to automatically update my Facebook status. So this morning when I tweeted that I was having a bad day that fact was broadcast to my 407 Twitter followers and 376 Facebook friends. The number of people that replied? 3. Two Facebook friends I know IRL and one Twitter follower who's only just started following me so is therefore presumably not sick to the back teeth of me moaning yet.
A couple of hours, one nap and many drugs later I tweeted that I'd managed to cry myself into physical pain. This time it warranted even less of a response: Just the one person who I only met last month said that she was sorry to hear I was having a sucky time. Again, I'm sure that once she's known me for more than three weeks she too will lose interest in me feeling rough.
I think stereotypical British stoicism is part of the problem. We're not supposed to talk about negative feelings, whether they be physical or mental. On Tuesday I had a brief conversation with someone I haven't seen for over 5 years: Since before I became "ill" (I've always had a shitty skeleton but there's a difference between "illness" and "impairment". Until 5.5 years ago I was mobility impaired but free from illness). She's doesn't know anything about me other than that I have a very loud laugh, but in the polite and conversational way that you do she asked on Tuesday "how have you been?"
I actually had to pause for a minute. "Do I answer honestly or do I just say what you're supposed to say which is 'fine'? She doesn't know me so doesn't need to hear my shit. But on the other hand I hate lying..." I opted for just shrugging because I couldn't bear to deviate from the social norm enough to say "not at all well actually." Except I did then explain that I'd been ill because I suck at keeping my trap shut.
With social rules dictating that we're not even supposed to answer "how are you?" honestly unless the answer is positive it's not entirely surprising that there is such a backlash against people like Simone who'll publicly state "I hurt" rather than keeping their British stiff upper lip.
I'm not going to pretend that I'm above the social rules and desensitisation. I have Twitter and Facebook friends with painful diagnoses and I don't reply every time they say "sneezed and broke a rib" or "dislocated my shoulder relocating my knee." I've rolled my eyes at friends who always cry when they're drunk because with inhibitions lowered the stiff upper lip falters and their sadness slips out. I'm not proud of it, but sometimes you don't want to listen to that dodgy mp3 and you want to listen to a new song you've never heard before. Or at least you want to listen to a song that'll play without scritching.
Then there are those who will criticise you for being open about how you're feeling. Those who'll attack you for complaining about feeling crappy. You wouldn't believe the number of times as a child I was told to shut the fuck up screaming about my broken bones because my distress would upset other people. The TwitBookSpace equivalent I guess would be unfriending/blocking someone for being honest about how they feel, giving a bitchy remark as a parting shot. Or deleting that corrupt file from your iTunes library.
When it comes to mental health we, as a culture, want to hear about it even less than physical health. If people are going to ignore me moaning about being in physical pain you can be sure they'll steer well clear of someone moaning about being in emotional pain. And if people can react with hostility to a cute small child screaming because they've got 3 freshly broken long bones and no painkillers in their system is it really surprising that people are hostile to someone saying "I'm killing myself"?
When it comes to talk of suicide we typically have 2 responses:
- Disbelief
- A desire to not get involved in case we make matters worse
It is a myth that people who talk about suicide don't go through with it.
I find it greatly alarming that we get a lot of anonymous commenters on WtB talking about how they plan to kill themselves if/when they lose their benefits. Sadly we have heard from people who don't believe those people actually are planning to kill themselves because of the myth that genuinely suicidal people don't talk about it.
As for point 2, I have an example in mind. Just before Christmas the wonderful Incurable Hippie read this article and started begging people in the Oxford area via social networks to go down to Wolvercote lock and take Mr Payne warm clothes and food and a puncture repair kit because being in Sheffield she wasn't in a position to physically help him herself.
Someone she asked refused to retweet the link because Mr Payne was suicidal and he felt that Mr Payne's aid should only come from The Professionals. I'm pretty sure that a thermos full of Heinz soup reheated by an amateur would've been satisfactory and that Payne didn't really need any food to be prepared by Jamie Oliver.
Yes, I do realise that the gentleman in question wasn't referring to pro chefs. But are we really that afraid of mental illness that taking hot soup to a cold depressed person is too scary? But taking soup to a cold person who's full of joie de vivre would be OK? Isn't it conceivable that if Mr Payne was treated like a human being instead of a social problem that he might not actually have been feeling suicidal in the first place?
We have a cultural thing about not talking about how we feel unless our feelings are all rainbows and sweeties. We ignore people who break that rule or are sometimes even hostile towards the social deviators. As a culture we have a big problem with people who'll speak out about feeling suicidal. Yet people are somehow still surprised that no-one rushed to Back's aid? Saddened, of course. But surprised? Really?
Edit: Just wanted to clarify that I don't think it's an internet problem; people have the same reaction in real life towards people who talk about illness regularly. I think it's more that ill people are supposed to be stoic about their pain and so those who do talk about it are castigated. If anything I think the problem is worse in real life: In my experience people actively avoid those who moan about their health all the time. Online people tend to just avoid the health-related updates rather than avoiding the ill person completely.
I also wanted to touch on the fact that every article I've read about Back quotes Graham Bell from the Brighton and Hove Depression Alliance as saying:
“People need to be friends in the real world as well as in the online world.”
Really? Funny thing about illness is it makes you ill. When you're in too much pain to get out of bed, or when you're too depressed to get out of bed, or when you're too stoned on medication to get out of bed how the hell is one supposed to get out there and maintain real-life friendships? I frequently go weeks and weeks without talking to friends in person. If it weren't for my online social life I'd have no way of keeping in touch with people at all. In person friendships are great for those with the health to manage them but who am I going to forge RL friendships with from the confines of my flat?
25 November 2010
Thoughts on the student protests, policing and the media
I'm so proud of British students right now. I'm especially proud of Britain's schoolchildren and sixth formers who protested yesterday. I was especially pleased when BBC News reported on sixth formers from Cambridge protesting, though I felt a slight pang of jealousy: When I was an oppressed1 and politically aware sixth former in Cambridge I'd have loved nothing more than to march through the streets to protect my future.
Of course, the media portrayal has mostly been of the tiny number of students who committed acts of damage to property, especially that police van. What most of the mainstream media isn't reporting (in fact I think only The Guardian has) is the number of protesters who tried to protect the van. In this video you can see some of them, and there's this iconic image from The Guardian:
At one point the BBC reporter in the Commons explained why politicians and the media are so keen to report on the poorly behaved few rather than the well behaved majority. He was reporting to the camera what a politician had told him (but I'm afraid I didn't catch who, the trouble with live TV). I'm paraphrasing him, but not much (and only because I didn't get to write/type down his exact words):
On one hand on our TV screens we're seeing looped footage of a few protesters smashing up an unoccupied police van (which some speculate was put there as bait) in the hope that it'll make the majority think "hmm, fees are good! Let's teach these brutal young things a lesson!" On the other hand what we're not seeing is the brutality from the other side.
Thanks to camera phones and the internet incidents of police brutality are harder to hide. And yesterday saw some unforgivable behaviour. Throughout the day there were many tweets being rapidly retweeted with content along the lines of "Officer abc123 kicked a 15 year old girl."
Some actual examples:
1 The Disability Discrimination Act was written while I was in my first year of sixth form. However it didn't come into effect until years later.
Of course, the media portrayal has mostly been of the tiny number of students who committed acts of damage to property, especially that police van. What most of the mainstream media isn't reporting (in fact I think only The Guardian has) is the number of protesters who tried to protect the van. In this video you can see some of them, and there's this iconic image from The Guardian:
At one point the BBC reporter in the Commons explained why politicians and the media are so keen to report on the poorly behaved few rather than the well behaved majority. He was reporting to the camera what a politician had told him (but I'm afraid I didn't catch who, the trouble with live TV). I'm paraphrasing him, but not much (and only because I didn't get to write/type down his exact words):
If the protests get violent the public will lose sympathy with the protesters and support our plans for higher fees.
On one hand on our TV screens we're seeing looped footage of a few protesters smashing up an unoccupied police van (which some speculate was put there as bait) in the hope that it'll make the majority think "hmm, fees are good! Let's teach these brutal young things a lesson!" On the other hand what we're not seeing is the brutality from the other side.
Thanks to camera phones and the internet incidents of police brutality are harder to hide. And yesterday saw some unforgivable behaviour. Throughout the day there were many tweets being rapidly retweeted with content along the lines of "Officer abc123 kicked a 15 year old girl."
Some actual examples:
- Cambridge student demo: policeman punched student in the face
- Police violence at Student Protest London 24 November
- Laurie Penny on the children trapped inside the Whitehall kettle until late at night when the temperature had dropped to freezing
1 The Disability Discrimination Act was written while I was in my first year of sixth form. However it didn't come into effect until years later.
13 August 2010
Where's the Benefit?
A bunch of us made a new blog all about the War on Welfare Claimants called Where's the Benefit?. Go on, have a look.
24 July 2010
The lowest of the low
Being female, gay and disabled1 you'd think I'd experience 3 times as much discrimination as a disabled but otherwise socially privileged bloke, right?
Wrong. All the discrimination I ever experience is disablism.
Not only is experiencing daily disablist acts (like not being able to get into a brand new café) frustrating, there's also the constant reminders that discrimination against disabled people provokes the least outrage among society at large out of all the isms.
Easter weekend 2009 there was the amazonfail brouhaha. It doesn't matter if someone from amazon.fr pressed the wrong button which "accidentally" meant rankings were stripped from any books to do with homosexuality or sex and disability. Where the conscious and deliberate disablism occurred was in the web/media frenzy. Everyone on the planet cried "homophobia" in their tweets, blog posts and news articles. Only a tiny, tiny smattering of people gave a crap that books on disability and sexuality had been affected too.
A couple of months ago the LGBT Labour party conference were refused drinks in a London pub. The story of homophobic discrimination spread across the internet like wildfire and was global news within a couple of hours. My gut reaction upon reading the story was to tweet Greencoat Boy: The gay in me is horrified. The disabled in me says "so what? Disabled people get refused service DAILY and it's not news.".
Two hours later my point got illustrated perfectly. I read this story of a wheelchair-using woman being refused service in a restaurant on the very same day. Naturally I tweeted the link. The story of a homophobic bar manager was tweeted and retweeted thousands and thousands of times. How many people retweeted the tale of a disablist restaurant manager? Two. Not two thousand; just two.
Yesterday it was news that a niqab-wearing young Muslim woman and her friend were refused entry onto a bus for "being a threat". I'm refused entry to roughly one in 5 of the buses I try to board because I'm a wheelchair user. Very often the driver doesn't even have the balls to tell me he's going to refuse me access, he just pulls up at the stop, doesn't get the ramp out, allows able-bodied2 passengers to board and then drives off.
Where's my news story in the top 10 on the BBC News website? Where's my "urgent investigation" into the discrimination I faced?
Superaleja once referred to "multiple layers of discrimination, like a crip-fail onion," which I think perfectly describes the 3 situations I've written about here. First disabled people get discriminated against, then there's the second layer of discrimination where we're denied the public outcry of horror that would be extended to the same discrimination being committed against any other minority group.
1 I have been told on many an occasion that it's a shame I'm not black too. During my stand up days (before I became too ill to carry on) I had an 'anti-fan' in Brighton who came to see me every time I gigged in the city to accuse me of being racist for telling the story of how daft people sometimes say "it's a shame you're not black." Being so hated really made me feel like I was doing the job properly.
2 I'm deliberately using the phrase "able-bodied" as the opposite of "physically impaired". There's a chance that some of the people boarding the bus are both disabled and able-bodied.
Wrong. All the discrimination I ever experience is disablism.
Not only is experiencing daily disablist acts (like not being able to get into a brand new café) frustrating, there's also the constant reminders that discrimination against disabled people provokes the least outrage among society at large out of all the isms.
Easter weekend 2009 there was the amazonfail brouhaha. It doesn't matter if someone from amazon.fr pressed the wrong button which "accidentally" meant rankings were stripped from any books to do with homosexuality or sex and disability. Where the conscious and deliberate disablism occurred was in the web/media frenzy. Everyone on the planet cried "homophobia" in their tweets, blog posts and news articles. Only a tiny, tiny smattering of people gave a crap that books on disability and sexuality had been affected too.
A couple of months ago the LGBT Labour party conference were refused drinks in a London pub. The story of homophobic discrimination spread across the internet like wildfire and was global news within a couple of hours. My gut reaction upon reading the story was to tweet Greencoat Boy: The gay in me is horrified. The disabled in me says "so what? Disabled people get refused service DAILY and it's not news.".
Two hours later my point got illustrated perfectly. I read this story of a wheelchair-using woman being refused service in a restaurant on the very same day. Naturally I tweeted the link. The story of a homophobic bar manager was tweeted and retweeted thousands and thousands of times. How many people retweeted the tale of a disablist restaurant manager? Two. Not two thousand; just two.
Yesterday it was news that a niqab-wearing young Muslim woman and her friend were refused entry onto a bus for "being a threat". I'm refused entry to roughly one in 5 of the buses I try to board because I'm a wheelchair user. Very often the driver doesn't even have the balls to tell me he's going to refuse me access, he just pulls up at the stop, doesn't get the ramp out, allows able-bodied2 passengers to board and then drives off.
Where's my news story in the top 10 on the BBC News website? Where's my "urgent investigation" into the discrimination I faced?
Superaleja once referred to "multiple layers of discrimination, like a crip-fail onion," which I think perfectly describes the 3 situations I've written about here. First disabled people get discriminated against, then there's the second layer of discrimination where we're denied the public outcry of horror that would be extended to the same discrimination being committed against any other minority group.
1 I have been told on many an occasion that it's a shame I'm not black too. During my stand up days (before I became too ill to carry on) I had an 'anti-fan' in Brighton who came to see me every time I gigged in the city to accuse me of being racist for telling the story of how daft people sometimes say "it's a shame you're not black." Being so hated really made me feel like I was doing the job properly.
2 I'm deliberately using the phrase "able-bodied" as the opposite of "physically impaired". There's a chance that some of the people boarding the bus are both disabled and able-bodied.
22 July 2010
Lie to Me
Lie to Me is my new favourite show. Well, I say "new", it's actually been just over a year since I sat and watched the whole first season in the space of 2 days because once I'd started watching I couldn't stop (like televisual Pringles). But calling it my "new favourite show" is my way of trying to explain that it's beaten CSI to the number one spot in my heart.
It seems to have slightly hit that difficult second album thing that musicians know too well with season 2. Season 1 was this wonderfully original show that looked at truth and lies in a way that had never been seen before on TV. Season 2 so far has just been all about the adrenalin: More episodes have had at least one of the main characters in mortal danger than not so it's no longer the original and unique series it was, because holding a major character at gunpoint is something you see pretty much daily on American TV (though I have a funny feeling the network demanded more danger in the hopes that the adrenalin would make it more popular). It's still damn good though, but if I was a teacher marking season 2 I'd write "could do better" in red ink on it.
Over the course of nearly 2 seasons Cal and the team have met quite a few disabled people: A guy with MS in 'Life Is Priceless' (though the ep was poorly researched and contained bad info about the mortality of folks with MS), several women who'd been blinded by a rapist in 'Blinded', a woman with multiple personalities in 'The Core of It', a paraplegic in 'Black Friday', and a veteran with PTSD in 'React to Contact'. In all of those episodes disability was used as a plot device and it hadn't been explored how disabled people could be harder for Cal to read, until last week.
In 'Teacher and Pupils' Cal is asked to help a police officer who has been shot and is now locked-in to identify his shooters.
I've had this little fantasy for a while where Cal is asked to investigate a crime in a segregated environment - probably a special school - and is faced with a difficulty in reading impaired faces/bodies: The face and arms that move constantly because that person has CP would be a barrier for Cal, the person with autism who never makes eye-contact whether they're lying or not, the person who seems constantly distracted because they have ADHD and not because they're in a hurry to get away because they're trying to hide something, not being able to follow the gaze of someone with nystagmus, and so on. Cal has often commented that he likes a challenge and investigating people with bodies and brains that work slightly differently to the ones he's used to reading would surely be a thrill.
And, of course, I'd ultimately want the episode to be an antidote to the CSI episode 'Sounds of Silence' which had a strong subtext of "segregation is good. If only he'd stayed in the safety of segregation and not gone out among those non-disableds he would never have been killed."
It seems to have slightly hit that difficult second album thing that musicians know too well with season 2. Season 1 was this wonderfully original show that looked at truth and lies in a way that had never been seen before on TV. Season 2 so far has just been all about the adrenalin: More episodes have had at least one of the main characters in mortal danger than not so it's no longer the original and unique series it was, because holding a major character at gunpoint is something you see pretty much daily on American TV (though I have a funny feeling the network demanded more danger in the hopes that the adrenalin would make it more popular). It's still damn good though, but if I was a teacher marking season 2 I'd write "could do better" in red ink on it.
Over the course of nearly 2 seasons Cal and the team have met quite a few disabled people: A guy with MS in 'Life Is Priceless' (though the ep was poorly researched and contained bad info about the mortality of folks with MS), several women who'd been blinded by a rapist in 'Blinded', a woman with multiple personalities in 'The Core of It', a paraplegic in 'Black Friday', and a veteran with PTSD in 'React to Contact'. In all of those episodes disability was used as a plot device and it hadn't been explored how disabled people could be harder for Cal to read, until last week.
In 'Teacher and Pupils' Cal is asked to help a police officer who has been shot and is now locked-in to identify his shooters.
I've had this little fantasy for a while where Cal is asked to investigate a crime in a segregated environment - probably a special school - and is faced with a difficulty in reading impaired faces/bodies: The face and arms that move constantly because that person has CP would be a barrier for Cal, the person with autism who never makes eye-contact whether they're lying or not, the person who seems constantly distracted because they have ADHD and not because they're in a hurry to get away because they're trying to hide something, not being able to follow the gaze of someone with nystagmus, and so on. Cal has often commented that he likes a challenge and investigating people with bodies and brains that work slightly differently to the ones he's used to reading would surely be a thrill.
And, of course, I'd ultimately want the episode to be an antidote to the CSI episode 'Sounds of Silence' which had a strong subtext of "segregation is good. If only he'd stayed in the safety of segregation and not gone out among those non-disableds he would never have been killed."
06 July 2010
Benefits part 1: How I benefit
It's taken me a while to even start writing these posts because at the moment I'm even less functional than usual. Overheating is one of the less pleasant symptoms of OI, and in case you hadn't noticed it's been rather warm lately. And then there's the fact that I've had a cold on top of my chronic sinus problems for more than 3 weeks which has had me whimpering a lot in between doses of painkillers. Basically all I've been fit for is laying on the sofa watching NCIS.
Edit: Another week has passed since I first sat and started writing this post before I found the spoons to come back and have another crack at finishing it.
I suppose I should start off by explaining exactly why I get the benefits I do. I'm generally of the opinion that my medical history is my business, not yours. Which is a bit odd because I'm a fairly open person. I think it's a reaction to the fact that because I'm disabled my medical history is supposed to be out there for public consumption. I'm also definitely of the opinion that my income is my business. But I've been called a "scrounger" by our politicians so many times that I've been ground down.
So here's my history:
I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component. I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street before my knees had swollen up so much that I couldn't bend them for the rest of the day.
I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking1, sleeping2 and eating3. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.
I've had osteogenesis since I was born (well, actually, since I was conceived) but until about 5 years ago I was perfectly healthy. There's a difference between illness and impairment. For many people they overlap but for many more there's a great deal of difference. So up until the age of about 26 I had a physical impairment, but I was a picture of health. At one point I didn't even notice that my GP had deregistered me because they hadn't seen or heard from me in so long. Being a healthy young person I earned for a significant chunk of my degree despite typical student work like bartending being not accessible to me. When I graduated I took on 2 part time jobs rather than a full time position. In addition I got paid for writing articles, doing media stuff for the now defunct Disability Rights Commission, and eventually I progressed far enough through the stand up circuit to get paid for making people laugh.
Then I got sick. I've always had slightly dodgy sinuses but starting in 2004 they got progressively worse. I can remember the day things started going downhill actually: I was in Edinburgh and it was the day I went to see Laurence's show. I've always taken co-dydramol for my bone and joint pain. But that day in Edinburgh was the first time in my life I'd had a headache that co-dydramol couldn't touch. I might as well have swallowed 2 M&Ms. These sinus pressure headaches became more severe and more frequent until I became unable to work in 2006 because spending roughly 2 days a fortnight in bed in agony doesn't please an employer.
How painful can a blocked nose be? Well, having grown up breaking my bones regularly I have a much higher psychological tolerance to pain than the average person. I recently had a nurse in a laser clinic describe me as "remarkable" because she was burning me with a laser and I didn't even blink. 2 years ago I broke my nose and didn't notice for 3 weeks because the pain was so minimal compared to what I'm used to in that region. It was only when I reached 3 weeks I thought "hmm. If it was anything other than broken it'd be healed by now." I've never, ever, taken anything stronger than 10/500 co-dydramol for a broken bone (or 3) but nothing less than morphine provides any relief at all for my sinuses. Morphine may relieve my pain but it comes with a side-effect of making me "drunk": it reduces my inhibitions and gives me verbal diarrhoea. So for around 2 days every 2 weeks I have the choice of being either in too much pain to work or too stoned to work. Someone who needs 2 out of every 10 working days off is not employable. 2 days every 2 weeks is an average during a "good" period. If I catch a cold they can last for months because related to my sinus problems I also have a rather buggered immune system. And my sinus pain can be bad for every one of those days for the whole 2 months it takes me to shake the cold.
"Why don't you work part time?" Because employers expect to know when you're coming in to work. Even if they list 'flexi-time' as an option they still expect you to be present at certain times and they like to know in advance when you'll be coming in. I can't predict in advance which days I'm going to be ill.
"Why don't you work from home?" I doesn't matter where I'm located. On days when I'm too ill to work, I'm too ill to work.
"Why don't you write?" When I had a contract as a columnist I'd get a phone call on the Tuesday asking me to submit an article on Friday. If I was ill on the Wednesday and the Thursday I'd have either nothing to hand in on Friday or I'd hand in something written under the influence of morphine. Either way, my contract would not get renewed. And it's taken me 8 days to write this piddling little blog post.
If I were otherwise unimpaired and just had my sinus problems I could probably manage a physical job that require little brainpower on ill days by taking so much morphine I couldn't feel a thing. I'd make absolutely no sense so would be unable to do a "thinking job", but I could manage a repetitive task job like unloading loaves of bread from a trolley and placing them on a supermarket shelf. But I'm not otherwise unimpaired, I have a knackered skeleton and "thinking jobs" are the only kind I can physically do.
I've really explored all the options and working is just not possible. So I get Incapacity Benefit. This is topped up with a very tiny amount of Income Support to make up the total a severely disabled person living alone is deemed by the government as needing to live on. I also get Housing Benefit to keep the roof over my head.
Part 2 coming soon. Unless this sore throat and bunged up ear turns into another cold...
1 December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
2 In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
3 As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).
Edit: Another week has passed since I first sat and started writing this post before I found the spoons to come back and have another crack at finishing it.
I suppose I should start off by explaining exactly why I get the benefits I do. I'm generally of the opinion that my medical history is my business, not yours. Which is a bit odd because I'm a fairly open person. I think it's a reaction to the fact that because I'm disabled my medical history is supposed to be out there for public consumption. I'm also definitely of the opinion that my income is my business. But I've been called a "scrounger" by our politicians so many times that I've been ground down.
So here's my history:
I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component. I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street before my knees had swollen up so much that I couldn't bend them for the rest of the day.
I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking1, sleeping2 and eating3. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.
I've had osteogenesis since I was born (well, actually, since I was conceived) but until about 5 years ago I was perfectly healthy. There's a difference between illness and impairment. For many people they overlap but for many more there's a great deal of difference. So up until the age of about 26 I had a physical impairment, but I was a picture of health. At one point I didn't even notice that my GP had deregistered me because they hadn't seen or heard from me in so long. Being a healthy young person I earned for a significant chunk of my degree despite typical student work like bartending being not accessible to me. When I graduated I took on 2 part time jobs rather than a full time position. In addition I got paid for writing articles, doing media stuff for the now defunct Disability Rights Commission, and eventually I progressed far enough through the stand up circuit to get paid for making people laugh.
Then I got sick. I've always had slightly dodgy sinuses but starting in 2004 they got progressively worse. I can remember the day things started going downhill actually: I was in Edinburgh and it was the day I went to see Laurence's show. I've always taken co-dydramol for my bone and joint pain. But that day in Edinburgh was the first time in my life I'd had a headache that co-dydramol couldn't touch. I might as well have swallowed 2 M&Ms. These sinus pressure headaches became more severe and more frequent until I became unable to work in 2006 because spending roughly 2 days a fortnight in bed in agony doesn't please an employer.
How painful can a blocked nose be? Well, having grown up breaking my bones regularly I have a much higher psychological tolerance to pain than the average person. I recently had a nurse in a laser clinic describe me as "remarkable" because she was burning me with a laser and I didn't even blink. 2 years ago I broke my nose and didn't notice for 3 weeks because the pain was so minimal compared to what I'm used to in that region. It was only when I reached 3 weeks I thought "hmm. If it was anything other than broken it'd be healed by now." I've never, ever, taken anything stronger than 10/500 co-dydramol for a broken bone (or 3) but nothing less than morphine provides any relief at all for my sinuses. Morphine may relieve my pain but it comes with a side-effect of making me "drunk": it reduces my inhibitions and gives me verbal diarrhoea. So for around 2 days every 2 weeks I have the choice of being either in too much pain to work or too stoned to work. Someone who needs 2 out of every 10 working days off is not employable. 2 days every 2 weeks is an average during a "good" period. If I catch a cold they can last for months because related to my sinus problems I also have a rather buggered immune system. And my sinus pain can be bad for every one of those days for the whole 2 months it takes me to shake the cold.
"Why don't you work part time?" Because employers expect to know when you're coming in to work. Even if they list 'flexi-time' as an option they still expect you to be present at certain times and they like to know in advance when you'll be coming in. I can't predict in advance which days I'm going to be ill.
"Why don't you work from home?" I doesn't matter where I'm located. On days when I'm too ill to work, I'm too ill to work.
"Why don't you write?" When I had a contract as a columnist I'd get a phone call on the Tuesday asking me to submit an article on Friday. If I was ill on the Wednesday and the Thursday I'd have either nothing to hand in on Friday or I'd hand in something written under the influence of morphine. Either way, my contract would not get renewed. And it's taken me 8 days to write this piddling little blog post.
If I were otherwise unimpaired and just had my sinus problems I could probably manage a physical job that require little brainpower on ill days by taking so much morphine I couldn't feel a thing. I'd make absolutely no sense so would be unable to do a "thinking job", but I could manage a repetitive task job like unloading loaves of bread from a trolley and placing them on a supermarket shelf. But I'm not otherwise unimpaired, I have a knackered skeleton and "thinking jobs" are the only kind I can physically do.
I've really explored all the options and working is just not possible. So I get Incapacity Benefit. This is topped up with a very tiny amount of Income Support to make up the total a severely disabled person living alone is deemed by the government as needing to live on. I also get Housing Benefit to keep the roof over my head.
Part 2 coming soon. Unless this sore throat and bunged up ear turns into another cold...
1 December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
2 In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
3 As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).
08 May 2010
My Email to the Lib Dems on a coalition with the Tories
I’m not usually a Lib Dem voter, my opinion tends to sway between Lib Dem, Labour and Green.
But I voted for you this week. Why? Because I’m terrified of a Tory government.
Terrified as a disabled person. Terrified they’ll take my benefits and leave me starving.
Terrified as a child of an even more disabled person. Terrified that despite my own impairment and health problems that I’ll have to give up what little life I have and become my dad’s carer when the Tories take his care hours away, expecting people to “volunteer”.
Terrified as a lesbian. The election campaign has been full of stories of Tory homophobia. Just google “Philippa Stroud”.
Terrified as a person with oodles of health problems. I depend on the NHS to live. Please don’t support Cameron in taking it apart.
And I voted for you for electoral reform. According to http://www.voterpower.org.uk/holborn-st-pancras my vote is only worth 10% of a vote. I want my vote to count.
Please read Johann Hari’s article on what Britain under the Tories would look like for someone like me: http://www.independent.co.uk/news/uk/politics/poverty-and-injustice-in-david-cameronrsquos-model-borough-1962318.html
Please don’t get drunk on the power of the possibility of a seat in cabinet with the Tories. Please work with Labour, Green et al.
If you do work with the Tories I will never be able to vote Lib Dem again.
*****************************
Footnote pinched from Lilwatchergirl: If you agree, and want to share your views with party HQ, e-mail balancedparliament@libdemvoice.org . They've asked for views before 2pm today, but I'm sure they'd find views useful at any time this weekend.
But I voted for you this week. Why? Because I’m terrified of a Tory government.
Terrified as a disabled person. Terrified they’ll take my benefits and leave me starving.
Terrified as a child of an even more disabled person. Terrified that despite my own impairment and health problems that I’ll have to give up what little life I have and become my dad’s carer when the Tories take his care hours away, expecting people to “volunteer”.
Terrified as a lesbian. The election campaign has been full of stories of Tory homophobia. Just google “Philippa Stroud”.
Terrified as a person with oodles of health problems. I depend on the NHS to live. Please don’t support Cameron in taking it apart.
And I voted for you for electoral reform. According to http://www.voterpower.org.uk/holborn-st-pancras my vote is only worth 10% of a vote. I want my vote to count.
Please read Johann Hari’s article on what Britain under the Tories would look like for someone like me: http://www.independent.co.uk/news/uk/politics/poverty-and-injustice-in-david-cameronrsquos-model-borough-1962318.html
Please don’t get drunk on the power of the possibility of a seat in cabinet with the Tories. Please work with Labour, Green et al.
If you do work with the Tories I will never be able to vote Lib Dem again.
Footnote pinched from Lilwatchergirl: If you agree, and want to share your views with party HQ, e-mail balancedparliament@libdemvoice.org . They've asked for views before 2pm today, but I'm sure they'd find views useful at any time this weekend.
02 May 2010
BADD 10: Discrimination by ignorance and the myth of the DDA
"But I thought everywhere was accessible now."
How I loathe that sentence. It usually follows my asking "so why did you hire somewhere inaccessible for your event? Because now I can't come."
For example, I've just spent the last 3 days at a film festival/conference tied to my course (and is why my BADD post is a day late). I arrived on Thursday, picked up my ticket and was told by cinema staff "it's in screen 2, which is not accessible."
Joy.
And, of course, the "but I thought..." line swiftly followed from the director of the event who'd hired the venue.
At the end of last year I joined a masters swimming team in my vague attempt to be slightly fitter/healthier. Recently the pool has had some lane closures due to building work and a member of the committee wanted to move the session I usually go to to a different pool until the building work had ended.
"Can you please not, cos, you know, I don't wanna be excluded and I hear the other pool is not accessible."
"But I thought..."
Lots of people started boo-hooing when The Astoria got demolished. Me? I was thrilled because never again will I miss seeing a band because they had their one London date in that inaccessible venue. When I told people why I was so pleased it had been demolished (and demolished to make way for an accessible train/tube station no less!) I frequently heard "But I thought..." I'm sure even most bands playing there didn't realise all the fans that were being excluded because of "but I thought..."
(I'm sure Jim Davidson would've loved playing there though.)
I'm a big fan of the DDA. Yeah, sure, it's got so many holes it's kinda like a sieve. But it wasn't around for the first half of my life and in the last 15 years since it was written I've noticed that the world has become much more accessible and less cruel.
But it does have its sieve-like qualities which means that the world isn't as accessible as it should be. There's not really any excuse for a major west end cinema that's part of a huge national chain to not have full access. But the holey law means they get away with it.
Then the myth that DDA works makes the problem worse. People book venues in good faith assuming they're accessible. The venues then think "we don't need to improve access because the money's still rolling in." And I'm the one that loses out.
I don't know how we go about pointing out to the world en masse that they're mythtaken (thanks Buffy!): The world is not accessible so when booking a venue you need to check access. But that's one I'll have to tackle another day. Now I'm going to put heat pads on my painy ankle and shoulder from hauling myself up a flight of stairs repeatedly for the last 3 days.
How I loathe that sentence. It usually follows my asking "so why did you hire somewhere inaccessible for your event? Because now I can't come."
For example, I've just spent the last 3 days at a film festival/conference tied to my course (and is why my BADD post is a day late). I arrived on Thursday, picked up my ticket and was told by cinema staff "it's in screen 2, which is not accessible."
Joy.
And, of course, the "but I thought..." line swiftly followed from the director of the event who'd hired the venue.
At the end of last year I joined a masters swimming team in my vague attempt to be slightly fitter/healthier. Recently the pool has had some lane closures due to building work and a member of the committee wanted to move the session I usually go to to a different pool until the building work had ended.
"Can you please not, cos, you know, I don't wanna be excluded and I hear the other pool is not accessible."
"But I thought..."
Lots of people started boo-hooing when The Astoria got demolished. Me? I was thrilled because never again will I miss seeing a band because they had their one London date in that inaccessible venue. When I told people why I was so pleased it had been demolished (and demolished to make way for an accessible train/tube station no less!) I frequently heard "But I thought..." I'm sure even most bands playing there didn't realise all the fans that were being excluded because of "but I thought..."
(I'm sure Jim Davidson would've loved playing there though.)
I'm a big fan of the DDA. Yeah, sure, it's got so many holes it's kinda like a sieve. But it wasn't around for the first half of my life and in the last 15 years since it was written I've noticed that the world has become much more accessible and less cruel.
But it does have its sieve-like qualities which means that the world isn't as accessible as it should be. There's not really any excuse for a major west end cinema that's part of a huge national chain to not have full access. But the holey law means they get away with it.
Then the myth that DDA works makes the problem worse. People book venues in good faith assuming they're accessible. The venues then think "we don't need to improve access because the money's still rolling in." And I'm the one that loses out.
I don't know how we go about pointing out to the world en masse that they're mythtaken (thanks Buffy!): The world is not accessible so when booking a venue you need to check access. But that's one I'll have to tackle another day. Now I'm going to put heat pads on my painy ankle and shoulder from hauling myself up a flight of stairs repeatedly for the last 3 days.
23 March 2010
Sport Relief and child carers
As I type there's a builder putting my kitchen back together in a slightly more accessible way after demolishing it last week. My home is in utter chaos. All the contents of my kitchen have been piled up in my living room so I can't get in there. My whole flat is filled with demolition dust. It's all pretty grim. (If you're at all interested you can see the photos here. So far I've managed a photo a day.)
I'm spending my days sat in my bedroom with my laptop atop my lap mostly watching TV shows on it. With all the dust and the complete lack of kitchen I'm staying at Lilwatchergirl & her Girl's during the week and then staying at my dad's at the weekends. The BettyCat is staying at dad's while the builders are here so she doesn't end up like the cat in A Bucket of Blood so the weekends are my chance for some Betty snuggles.
It's a well known fact that I'm a telly addict, or I like to think of myself as a 'professional telly watcher': My MA is in Cult Film & TV so watching TV is currently my occupation. And yes, I really am still doing a supposedly one year course that I started in 2007; chronic illness, surgery, mum dying, injury leading me to spend 8 months on painkillers that make me sleep all the time, 2 months of swine flu because my immune system is buggered, dad in hospital and still several chronic illnesses have made the course last somewhat longer than intended. Thankfully Brunel have been great about how utterly shit my life is.
Despite being a massive consumer of TV I generally only watch scripted drama TV, I almost never watch chat shows, game shows, the news (which I prefer to access online), panel shows or general daytime tripe. And I also almost never watch TV as it's broadcast, preferring to make use of services like iPlayer.
I'm not living in my own home at the moment though because it's a building site. Staying with other people I'm finding myself watching things I wouldn't usually watch. When someone's good enough to let you sleep at theirs you can't really grab the remote and turn off their favourite show. So on Friday night I found myself watching Sport Relief, which I almost certainly wouldn't have watched if I could get anywhere near my own TV. It was pretty funny. Smithy's sketch, the Olympian and Paralympian Choir and the Ashes to Ashes sketch were the highlights for me.
Some of the appeals were heartwarming. Chris Moyles crying because he'd just seen a baby die from malaria prompted such generosity that they repeated that appeal again an hour later.
But a couple of the appeal videos made me want to smash dad's tellybox in frustration: The videos of children who care for disabled parents. Obviously I wasn't annoyed with the children themselves; their lives suck. They've been forced into a terrible situation and absolutely deserve to be helped.
What made me feel sick was that in a supposedly first world country in the 21st century child slavery is still legal. There's no need for it to be, and it's not something that can be fixed by Sport Relief providing these children with a befriender for 2 hours a week.
If those disabled parents had all their support needs met then the children would be free to be children and would be able to have the carefree childhood they should have. It's a simple fix.
It all starts with a faulty assumption that if a disabled person has a child, or a person has a child then becomes disabled that that child will automatically care for their parent. Laurence Clark once wrote a brilliant article about this assumption. I'm a child of not just one but two disabled parents and I never once had to perform any care roles for my parents. (Yeah, OK, I was more severely impaired than the 2 of them put together up until I started secondary school, but we'll just gloss over that.)
My parents had a care package meaning that I never had to worry if mum would need help getting things down from a high cupboard or carrying the shopping home. When they both had separate accidents in 1994 resulting in a reduction in mobility for both of them that package was increased dramatically. By this point I would've been able to perform a lot of "care" tasks; no longer breaking my bones with such regularity I'd learned to walk a little and was able to push a manual wheelchair infinitely. I could've done the shopping and the cooking and picked up things one of them had dropped on the floor, but I never had to, they had assistance to do the things they couldn't allowing me to be a teenager.
All children in the UK should be free from slavery. All disabled people should get their assistance needs met. If all disabled people got their needs met there would be no need for any child to enter into this one form of legal slavery.
Right now we are in an amazing position to change the lives of young carers. We have a general election coming up. A £5 donation to Sport Relief might give a young carer an hour with a befriender to go bowling but demanding that the politicians gaining power in 2 months time meet the assistance needs of their disabled parents can give those same children back their childhoods.
So please take this opportunity to lobby the candidates in your area about this issue. You have the power to make a real change for these children and their parents. Change that no Sport Relief project can bring. With disabled people being enabled and their children allowed to be children your £5 can then go to buying mosquito nets to save the lives of babies like this one in a country where we Brits don't have the power to effect political change.
I'm spending my days sat in my bedroom with my laptop atop my lap mostly watching TV shows on it. With all the dust and the complete lack of kitchen I'm staying at Lilwatchergirl & her Girl's during the week and then staying at my dad's at the weekends. The BettyCat is staying at dad's while the builders are here so she doesn't end up like the cat in A Bucket of Blood so the weekends are my chance for some Betty snuggles.
It's a well known fact that I'm a telly addict, or I like to think of myself as a 'professional telly watcher': My MA is in Cult Film & TV so watching TV is currently my occupation. And yes, I really am still doing a supposedly one year course that I started in 2007; chronic illness, surgery, mum dying, injury leading me to spend 8 months on painkillers that make me sleep all the time, 2 months of swine flu because my immune system is buggered, dad in hospital and still several chronic illnesses have made the course last somewhat longer than intended. Thankfully Brunel have been great about how utterly shit my life is.
Despite being a massive consumer of TV I generally only watch scripted drama TV, I almost never watch chat shows, game shows, the news (which I prefer to access online), panel shows or general daytime tripe. And I also almost never watch TV as it's broadcast, preferring to make use of services like iPlayer.
I'm not living in my own home at the moment though because it's a building site. Staying with other people I'm finding myself watching things I wouldn't usually watch. When someone's good enough to let you sleep at theirs you can't really grab the remote and turn off their favourite show. So on Friday night I found myself watching Sport Relief, which I almost certainly wouldn't have watched if I could get anywhere near my own TV. It was pretty funny. Smithy's sketch, the Olympian and Paralympian Choir and the Ashes to Ashes sketch were the highlights for me.
Some of the appeals were heartwarming. Chris Moyles crying because he'd just seen a baby die from malaria prompted such generosity that they repeated that appeal again an hour later.
But a couple of the appeal videos made me want to smash dad's tellybox in frustration: The videos of children who care for disabled parents. Obviously I wasn't annoyed with the children themselves; their lives suck. They've been forced into a terrible situation and absolutely deserve to be helped.
What made me feel sick was that in a supposedly first world country in the 21st century child slavery is still legal. There's no need for it to be, and it's not something that can be fixed by Sport Relief providing these children with a befriender for 2 hours a week.
If those disabled parents had all their support needs met then the children would be free to be children and would be able to have the carefree childhood they should have. It's a simple fix.
It all starts with a faulty assumption that if a disabled person has a child, or a person has a child then becomes disabled that that child will automatically care for their parent. Laurence Clark once wrote a brilliant article about this assumption. I'm a child of not just one but two disabled parents and I never once had to perform any care roles for my parents. (Yeah, OK, I was more severely impaired than the 2 of them put together up until I started secondary school, but we'll just gloss over that.)
My parents had a care package meaning that I never had to worry if mum would need help getting things down from a high cupboard or carrying the shopping home. When they both had separate accidents in 1994 resulting in a reduction in mobility for both of them that package was increased dramatically. By this point I would've been able to perform a lot of "care" tasks; no longer breaking my bones with such regularity I'd learned to walk a little and was able to push a manual wheelchair infinitely. I could've done the shopping and the cooking and picked up things one of them had dropped on the floor, but I never had to, they had assistance to do the things they couldn't allowing me to be a teenager.
All children in the UK should be free from slavery. All disabled people should get their assistance needs met. If all disabled people got their needs met there would be no need for any child to enter into this one form of legal slavery.
Right now we are in an amazing position to change the lives of young carers. We have a general election coming up. A £5 donation to Sport Relief might give a young carer an hour with a befriender to go bowling but demanding that the politicians gaining power in 2 months time meet the assistance needs of their disabled parents can give those same children back their childhoods.
So please take this opportunity to lobby the candidates in your area about this issue. You have the power to make a real change for these children and their parents. Change that no Sport Relief project can bring. With disabled people being enabled and their children allowed to be children your £5 can then go to buying mosquito nets to save the lives of babies like this one in a country where we Brits don't have the power to effect political change.
12 March 2010
Hate
On the International Day of Disabled People I mentioned that the EHRC had used the day to launch an inquiry into disablist harassment in the wake of the Pilkington murder/suicide.
Something occurred to me a couple of days after posting: Plenty of disabled people have been killed in hate crimes - people like Brent Martin who was killed over a bet - but they hadn't really entered the consciousness of non-disabled people. What made the "Pilkington case a Lawrence moment for disability hate crime"? Eventually it hit me: Fiona Pilkington was not disabled. She committed murder/suicide out of frustration at the disablist harassment of her two disabled children. For the first time disablist hate crime was responsible for the death of a non-disabled person. And I think that's why the public suddenly gave a shit. If disablist hate crime was still only killing us mere disableds, no-one would care.
Fortunately disablist hate is now getting the attention of both non-disabled people and at least one disabled person who had previously thought that disablist hate crimes were fiction.
This week we've had the sad news of the death of Mancunian David Askew. Unusually for this kind of story it has been news. For a while yesterday (Thursday) the BBC story about his death topped the list of "most read" stories on the site. Many publications note that he was 'tormented to death' yet I've not seen one article remark that the harassment was probably fuelled by disablist hate.
Also this week we've had the rather ridiculous Ofcom decision that TV stations should broadcast the word "retard" because to not do so would be a breach of viewers' human rights. In other words, encouraging disablist hate crimes is good. Mencap have launched an Email campaign against Ofcom's ruling
Today the Independent ran a column filled with offensive language, praising Ofcom's decision, and slamming 'political correctness'. Yes, the same paper that also today declared David Askew's death a "tragedy" and asked "Could nothing have been done to protect him?" The Independent's right hand wants the right to call disabled people offensive names while the left hand wants to protect people like David Askew. Apparently the editor is completely oblivious to the fact that Askew was no doubt repeatedly called a "retard" during his decade of harassment.
The Pilkington case might have brought the public's awareness of disablist hate some way forward but with Ofcom and the Independent declaring that disablist hate speech is not only acceptable but a good thing we've still got a long way to go.
Edit: For those of you who think that not wanting to be subjected to hate speech is "political correctness gone mad;" Here's Johnny Knoxville (really not known for his PCness) and his friend and colleague Eddie Barbanell on why the word "retard" is not acceptable:
Edit 22nd March: Today there are finally a couple of news stories containing both "David Askew" and "disability hate crime" on bbc.co.uk and in The Independent.
Something occurred to me a couple of days after posting: Plenty of disabled people have been killed in hate crimes - people like Brent Martin who was killed over a bet - but they hadn't really entered the consciousness of non-disabled people. What made the "Pilkington case a Lawrence moment for disability hate crime"? Eventually it hit me: Fiona Pilkington was not disabled. She committed murder/suicide out of frustration at the disablist harassment of her two disabled children. For the first time disablist hate crime was responsible for the death of a non-disabled person. And I think that's why the public suddenly gave a shit. If disablist hate crime was still only killing us mere disableds, no-one would care.
Fortunately disablist hate is now getting the attention of both non-disabled people and at least one disabled person who had previously thought that disablist hate crimes were fiction.
This week we've had the sad news of the death of Mancunian David Askew. Unusually for this kind of story it has been news. For a while yesterday (Thursday) the BBC story about his death topped the list of "most read" stories on the site. Many publications note that he was 'tormented to death' yet I've not seen one article remark that the harassment was probably fuelled by disablist hate.
Also this week we've had the rather ridiculous Ofcom decision that TV stations should broadcast the word "retard" because to not do so would be a breach of viewers' human rights. In other words, encouraging disablist hate crimes is good. Mencap have launched an Email campaign against Ofcom's ruling
Today the Independent ran a column filled with offensive language, praising Ofcom's decision, and slamming 'political correctness'. Yes, the same paper that also today declared David Askew's death a "tragedy" and asked "Could nothing have been done to protect him?" The Independent's right hand wants the right to call disabled people offensive names while the left hand wants to protect people like David Askew. Apparently the editor is completely oblivious to the fact that Askew was no doubt repeatedly called a "retard" during his decade of harassment.
The Pilkington case might have brought the public's awareness of disablist hate some way forward but with Ofcom and the Independent declaring that disablist hate speech is not only acceptable but a good thing we've still got a long way to go.
Edit: For those of you who think that not wanting to be subjected to hate speech is "political correctness gone mad;" Here's Johnny Knoxville (really not known for his PCness) and his friend and colleague Eddie Barbanell on why the word "retard" is not acceptable:
Edit 22nd March: Today there are finally a couple of news stories containing both "David Askew" and "disability hate crime" on bbc.co.uk and in The Independent.
01 March 2010
Gadgets
Just for a change, I am ill. I was going to do all sorts of constructive things today, but between pain and painkillers I have the attention span of a gnat (hat tip to Sheldon for the gnat quote). So I'm going to rant. Because that comes naturally and requires little concentration. As you've probably already gathered if this isn't the first post here you've read.
iWant an iPhone. I really, really, want an iPhone. The phones themselves aren't all that special; but they've captured the imagination of every software developer so there's literally an app for everything. Want do do your shopping on the move? There's an app for that. Watching a film and you want to know where you've seen that actor before? There's an app for that. Trouble sleeping at night? There's an app for that. Trying to find a laptop-friendly café? There's an app for that.
I've got an iPod Touch which is basically like an iPhone without functioning as a phone. So you can send Email using it as long as you've got a WiFi connection, you can surf the web on it as long as you've got a WiFi connection, you can Tweet on it as long as you've got a WiFi connection... Basically it's a useful little gadget until you take it out of the house and then it only functions as an mp3/mp4 player. But that's OK, because I only needed it as an mp3/mp4 player. Having an iPod Touch has given me an insight into whether or not the iPhone would be accessible to me: And the answer is a great big no.
It's a great little gadget for playing music on, browsing the web on and checking my Facebook notifications on. My access problem with it comes as soon as I start to type: It's excruciatingly painful. Typing on a touchscreen means you have to keep all your other digits held back well away from the screen otherwise they'll brush against it and type something random. And I really need to rest my fingers on my phone's keyboard like you do when proper touch typing. Having to keep my digits curled up away from the screen makes my RSI-addled arms scream "pain! Pain! PAIN!"
I know I'm not the only person to have access problems with the iPhone, check out Geoff Adams-Spink's review.
And I thought the days of inaccessible phones died along with those stupid pokey pen things ("stylus" I believe was the technical term). I can't grip an actual pen, so why on earth would a small poking device be any easier to hold?
ATMac's article about Dragon's dictation software for iPhone/iPod makes it look slightly more manageable, but a big problem with speech-to-text software is background noise. I use Dragon's NaturallySpeaking on my PC and my upstairs neighbour's TV interferes with it, so I can't imagine that dictating a text message in a noisy pub is going to work. At all.
I'm not anti-touchscreen. I think they're ace. Wanting to click a link and just being able to poke it is a brilliant thing. I just can't type on a virtual keyboard because of "ow". Which is where Google's G1 comes in. It has both a touchscreen and a slide out QWERTY keyboard. I've had a play with Lilwatchergirl's G1 and it seems to be a piece of genius. So why haven't I got one of them? Because they're only available on T-mobile and their network coverage is rubbish. Virgin Mobile use T-mobile's network and I know from trying to use my Virgin mobile broadband dongle that you basically can't get a T-mobile signal outside of London.
So I'm stuck with a rather crappy BlackBerry Curve 8520. I call it "crappy" because in many ways it's worse than its predecessor, the 8310. The 8310's camera had a flash, the 8520's does not; so you can't take photos indoors. The 8310 had GPS, the 8520 does not. And the 2D limited palette icons on the 8520 look miserable compared to the 3D multicolour picture icons on the 8310. So why didn't I return my 8520 at the end of my 14 day evaluation period and keep on using my 8310? 2 reasons: 1) The 8520 has WiFi so I can get decent speed internet on it indoors. 2) It has a web browser that works adequately, the one on the 8310 was utterly useless.
While the iPhone has an app for everything, the BlackBerry has very few apps, and most of them are rubbish:
In my experience Tweetie for iPhone is the best way to access Twitter. It's wonderful. It makes ÜberTwitter look pretty pants in comparison (but I will admit that ÜberTwitter has got a lot better lately). The Facebook app for BlackBerry has, again, gotten better recently; but it's still rubbish compared to Facebook for iPhone and I usually end up accessing Facebook on my phone via http://m.facebook.com. Absolute Radio have had an iPhone app out for ages. I got all excited a couple of weeks ago when I found out that they'd finally released their long promised BlackBerry app, only to discover that it's only for 3 models and the 8520 isn't one of them. And Safari on the iPhone makes BlackBerry's built in browser look like it belongs in the 1990s.
After all this ranting, what would make me happy? Simple: If Apple made an iPhone with a slide out QWERTY keyboard like the G1 phone. If they did bring out such a thing I'd sell a kidney to be able to afford one on the day of release. As a consolation prize I'd be satisfied if BlackBerry joined the twenteens.
iWant an iPhone. I really, really, want an iPhone. The phones themselves aren't all that special; but they've captured the imagination of every software developer so there's literally an app for everything. Want do do your shopping on the move? There's an app for that. Watching a film and you want to know where you've seen that actor before? There's an app for that. Trouble sleeping at night? There's an app for that. Trying to find a laptop-friendly café? There's an app for that.
I've got an iPod Touch which is basically like an iPhone without functioning as a phone. So you can send Email using it as long as you've got a WiFi connection, you can surf the web on it as long as you've got a WiFi connection, you can Tweet on it as long as you've got a WiFi connection... Basically it's a useful little gadget until you take it out of the house and then it only functions as an mp3/mp4 player. But that's OK, because I only needed it as an mp3/mp4 player. Having an iPod Touch has given me an insight into whether or not the iPhone would be accessible to me: And the answer is a great big no.
It's a great little gadget for playing music on, browsing the web on and checking my Facebook notifications on. My access problem with it comes as soon as I start to type: It's excruciatingly painful. Typing on a touchscreen means you have to keep all your other digits held back well away from the screen otherwise they'll brush against it and type something random. And I really need to rest my fingers on my phone's keyboard like you do when proper touch typing. Having to keep my digits curled up away from the screen makes my RSI-addled arms scream "pain! Pain! PAIN!"
I know I'm not the only person to have access problems with the iPhone, check out Geoff Adams-Spink's review.
And I thought the days of inaccessible phones died along with those stupid pokey pen things ("stylus" I believe was the technical term). I can't grip an actual pen, so why on earth would a small poking device be any easier to hold?
ATMac's article about Dragon's dictation software for iPhone/iPod makes it look slightly more manageable, but a big problem with speech-to-text software is background noise. I use Dragon's NaturallySpeaking on my PC and my upstairs neighbour's TV interferes with it, so I can't imagine that dictating a text message in a noisy pub is going to work. At all.
I'm not anti-touchscreen. I think they're ace. Wanting to click a link and just being able to poke it is a brilliant thing. I just can't type on a virtual keyboard because of "ow". Which is where Google's G1 comes in. It has both a touchscreen and a slide out QWERTY keyboard. I've had a play with Lilwatchergirl's G1 and it seems to be a piece of genius. So why haven't I got one of them? Because they're only available on T-mobile and their network coverage is rubbish. Virgin Mobile use T-mobile's network and I know from trying to use my Virgin mobile broadband dongle that you basically can't get a T-mobile signal outside of London.
So I'm stuck with a rather crappy BlackBerry Curve 8520. I call it "crappy" because in many ways it's worse than its predecessor, the 8310. The 8310's camera had a flash, the 8520's does not; so you can't take photos indoors. The 8310 had GPS, the 8520 does not. And the 2D limited palette icons on the 8520 look miserable compared to the 3D multicolour picture icons on the 8310. So why didn't I return my 8520 at the end of my 14 day evaluation period and keep on using my 8310? 2 reasons: 1) The 8520 has WiFi so I can get decent speed internet on it indoors. 2) It has a web browser that works adequately, the one on the 8310 was utterly useless.
While the iPhone has an app for everything, the BlackBerry has very few apps, and most of them are rubbish:
The App World store has just about 2,000 apps available for download, compared to the iPhone App Store’s 90,000 apps or Android’s 12,000.
From http://www.wired.com/gadgetlab/2009/11/blackberry-innovative-edge/
In my experience Tweetie for iPhone is the best way to access Twitter. It's wonderful. It makes ÜberTwitter look pretty pants in comparison (but I will admit that ÜberTwitter has got a lot better lately). The Facebook app for BlackBerry has, again, gotten better recently; but it's still rubbish compared to Facebook for iPhone and I usually end up accessing Facebook on my phone via http://m.facebook.com. Absolute Radio have had an iPhone app out for ages. I got all excited a couple of weeks ago when I found out that they'd finally released their long promised BlackBerry app, only to discover that it's only for 3 models and the 8520 isn't one of them. And Safari on the iPhone makes BlackBerry's built in browser look like it belongs in the 1990s.
After all this ranting, what would make me happy? Simple: If Apple made an iPhone with a slide out QWERTY keyboard like the G1 phone. If they did bring out such a thing I'd sell a kidney to be able to afford one on the day of release. As a consolation prize I'd be satisfied if BlackBerry joined the twenteens.
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