Just put the shovel down, Ted. #StellasChallenge

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

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

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

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

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

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

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

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

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

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

Have you encountered attitudes that you would like to change?

Yes. The attitudes of people like you.

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

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

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

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

What impact does this have on family life?

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

How does that make you feel?

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

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

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

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

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

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

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

TEDxSydney Impact issues an apology for #StellasChallenge http://t.co/3VqUkETg5G

— TEDxSydney (@tedxsydney) May 23, 2015

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

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

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

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

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

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

The project is wrong. Everything about it is wrong.

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

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

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

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

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

♫... If you were me then you'd be screaming "someone shoot me"...♫

I've been trying to write a piece about Assisted Suicide (AS) for years. I've been collating links and quotes here and there. I've written the odd paragraph that's popped into my head. I've compiled statistics, made notes on documentaries and generally tried to write a well researched, fact-based post.

Maybe I'll actually post it some day. Today I'm not using quotes from other people about why they think legalising AS is bad; today I'm writing purely about my own thoughts and experiences. The rest of this post is behind a jump due to talk of suicide and probably other triggery things too.

♫...What else should I be? All apologies. What else should I say? Everyone is gay...♫

Both the mainstream media and the gay press have been writing vast amounts of articles over the last couple of days about Uganda's new homophobic law, punishing gays with up to life imprisonment for having the audacity to love. Rightly so; it's an outrageous law that needs to be condemned internationally.

But there's been one remarkable fact omitted from all the write ups I've read in the pink press, and that's the disablism written into the law.

First-time offenders will be sentenced to 14 years. But people found guilty of "aggravated homosexuality" which means 'repeated gay sex between consenting adults and acts involving a minor, a disabled person or where one partner was infected with HIV' will be sentenced to life. The mainstream media will write about it - that link takes you to The Guardian - but not the gay press.

(Note I said "all the write ups I have read". If you've seen an article in the gay press that I've missed, please post a link in the comments.)

As David pointed out in a post on my Facebook wall with regards to the law itself:

the Ugandan law considers gay sex with a disabled person to be equivalent to sex with a child, so it's simultaneously equating being gay with being a paedophile, and being disabled with being a child. Absolutely massive bigotry fail for the Ugandans.

I'm sure the press don't think it's worth reporting the extra sentencing for shagging a disabled person because disabled people are seen as so disgusting that the authors of the articles themselves would never dream of doing one of us. You have to remember that 70% of people would never have sex with a disabled person, and I've never seen any evidence to suggest that gay people are less disablist. I'm sure that journalists writing for gay publications can imagine themselves going on assignment to Uganda and winding up spending 14 years in jail, but they just can't envisage hooking up with a hot crip; because they refuse to see disabled people as sexual beings.

So I'm an aggravated homosexual alright.

The weirdest thing is that it's not the gay disabled person that's going to get the increased sentence; it's their partner. The press usually suddenly give a crap about disability issues when they start to affect non-disabled people. Like how the papers didn't give a damn about disability hate crime until the death of Fiona Pilkington. But once a non-disabled person had taken her own life because of the disablist harassment her family faced; the press were all over it. Most people still call it "the Pilkington case", despite the fact that she murdered her disabled daughter Francecca Hardwick who'd been on the receiving end of the hate crime.

This isn't the first time the gay press have ignored issues where gayness and disabledness intersect. When disabled gay teenager Steven Simpson was first killed, the gay press wouldn't touch the story. That particular news story for Huff Post's Gay Voices was written when his killer was sentenced nearly a year later (and several other gay outlets did deign to report it at that point too).

The one place that reported the story at the time of Simpson's death was The Daily Mail. Remarkable considering they usually hate both gay people and disabled people in equal measure.

At the time I did Email a gay website drawing their attention to Simpson's death and the reply I got was:

I wasn't quite sure we could draw the connection clearly enough to warrant a story

Because an openly gay kid getting set on fire suddenly can't be connected to anything gay if he also has an impairment. Disability is like the ultimate gay remover. (But no-one tell Museveni that or he'll go around snapping the spines of suspected homos to sanitise the gay away.)

This same website that doesn't think that there's a gay enough connection when a gay kid gets killed is the same website that once devoted an entire article to the fact that the toilet above Ben Bradshaw's Parliamentary office was leaking.

It wasn't gay urine leaking from a gay toilet dripping through a gay ceiling. It wasn't a gay interest news story. Gay kids getting immolated? That's a gay interest news story.

Unsurprisingly I had a bit of a Twitter rant about this yesterday morning. And I got a reply from a gay website. At the risk of sounding like Upworthy: You'll never believe what they said.

You'd think that anyone with a modicum of nous would either ignore my rant or say "you know what: We could do better." Instead the reply was a link to an article. The article was a write-up of a wheelchair user's experience of bad access at a Pride festival.

One article. One. And they expect a fucking commendation cookie for being inclusive?

As a disabled lesbian, the gay press's determined ignorance of topics where gayness meets disability is a personal matter. But I'm not some unique special snowflake. Around 18% of the population have some kind of impairment and that's going to be higher among the gay community due to the increased incidence of mental health problems and rates of HIV. By sticking their heads in the sand where the two issues intersect the gay press are snubbing probably at least a fifth of their audience. The gay press is mostly an online business, and that means they need pageviews to make money from advertisers. By failing to cater to such a sizeable chunk of their prospective readership they're pissing away ad revenue. You'd think the economic benefits of including the whole gay community in their content would be enough to convince them to stop ignoring us.

♫..."But don't look back in anger" I heard you say...♫

2013: What a piece of shit year that was. If I was of a superstitious inclination I'd postulate that with a "13" in the name, it was bound to be doomed. But I'm not; it was just a shit year. I mean more shit than usual that is: Life has been shit for me for a very long time.

The year started with what I thought was a brilliant idea. I was in the bath one night and I had an idea for a short horror film. The idea was accompanied by something one of my lecturers said during my MA that "the pulp is political" and it made a horror film about the cuts seem even more sensible.

To be honest, I expected daylight to come the following morning and to realise what a daft idea I'd had the night before. Instead, more ideas came. Before I knew it I had all the scenes plotted out in my head and much of the dialogue too. So I decided to type it up and ask a few producer friends if they thought it was viable.

At one point it looked like I had a producer on board and all systems were go. I got in touch with a few actors who I thought might be into it. Liz was especially amazing; she put me in touch with so many people who could be involved either in front of or behind the camera.

It really looked like it might happen. Like my daft idea might come off. I was struggling a bit under the stress, but nothing too bad.

Then the project lost a producer. I don't blame them at all; I totally understand a need to pay the rent over and above a not-for-profit, anti-cuts film. I started looking for a new producer...

... And that was when I really went mental. I can quite honestly say that I have never been so close to having a full-blown breakdown. I questioned the point of my existence when I was too useless to even be able to find a film producer on at least an hourly basis.

I also hated myself for not being able to produce it myself. I don't have the skills required or the sanity to be able to do it; and that was another thing I regularly berated myself for being so useless about.

So many people had offered their skills or given their time, and I couldn't pull it off. And I was getting crazier by the day.

On Good Friday I met with Wendy who'd kindly edited the script. And that was the last work I did on the film. Her handwritten notes on a print-out of the script are in a pink bag about 3 feet from where I'm sitting right now, and they're just sitting there, not typed up.

A few months later I was having a conversation with a friend about my failed foray into screenwriting. "It sounds like you need a producer to help you find a producer," was how she succinctly put the problems that had driven me round the twist.

It still seems so wasteful that there's a script ready, actors keen on the project, a fundraising strategy, etc, and it's all going to waste because of the dearth of producers out there. But I can't keep producer-hunting when there are none to be found; and making myself mental in the process. So I guess that's that.

It took a while after giving up for my sanity to be restored; I continued to question what the point of my being alive was when I couldn't pull off something so seemingly simple. In fact, it took until about the summer: And then it was my body's - rather than my brain's - turn to fail on me.

I royally fucked up my left knee....

Hang on! I'm getting ahead of myself! Before there was the knee; there was the digestive discovery.

My stomach has been fucked for years now. Worse than the acid reflux, worse than the stomach feeling like it's on fire, worse than my ability to eat being totally dependent on my stomach's whims has been the belching. I have spent the last few years feeling like I've swallowed the contents of several helium balloons. Gastroenterologists have giving me drugs to speed up my digestive transit which just forces the belches to come out as farts instead. So I quit those because, frankly, the constant belching was better.

But having a stomach perpetually full of air was horrific. It was painful because my stomach was always so distended with gas. Sometimes I even had trouble breathing because my stomach was so full of air that it impaired my lungs ability to inflate properly. Sleeping was impossible because air rises so you can't belch when you're lying down flat. I had to wake up several times a night, sit up, and beat myself on the chest until I'd expelled most of the air so I could try sleeping again for a few more hours.

In May I decided to experiment with going lactose-free. Holy fucking shit, what a relief. Yes, I miss cheese. And milk chocolate. But it's a small price to pay for the relief of not having my breathing compromised by such an inflated stomach.

But back to the knee. It was about July I think that it went wrong. I have a pretty high pain tolerance. I'll walk around on broken feet without taking painkillers. In fact I fractured a metatarsal while my knee was knackered and it totally didn't bother me. But my knee; that was a different story. It wasn't a bony injury; I could tell that. My GP sent me for an x-ray to rule out bone damage, and I was vindicated. It was something tendony, I don't know exactly what: I never got a proper diagnosis. For about 2 and a half months I needed morphine just to be able to walk to the toilet in my teeny tiny flat.

Not only did I have the drugs making me drowsy; my knee itself was also exhausting. Different types of pain and injury have different effects. Some pains will keep you awake all night with their agony; other pains will drain all your energy and make you sleep 12 hours a night. My knee fell into that latter category.

Also over the summer I had to say farewell to my beloved 5 year old netbook. Almost everything I've written that's worth reading over the last 5 years was written on that machine. It was a cheap thing I picked up in the supermarket to take into hospital with me when I had surgery in Nov 08, but it provided 5 years of loyal service. I had to replace it with this temperamental piece of shit running Windoze 8. It's slow, moody and a pain in the arse. I suppose we at least make a matching pair. Though I'm sure that one day I'll lose my patience with this and throw it out of a window.

The autumn saw a return to depressive form; although not quite as severely as earlier in the year. I had a realisation that it was October and I had absolutely nothing to show for the year that was nearly finished. I may not have the health to hold down a job, I may spend a lot of my time sitting in hospital waiting rooms. But at least in 2012 I'd done quite a lot of blogging on my "good" days. 2013 was almost over and I'd done almost nothing. I'd written a film which I couldn't find a producer for; and that was literally all I'd done. No powerful blog posts, no going to protests. There were several protests during the summer that I couldn't go to because I didn't have enough painkillers to be able to stray that far from my bed. Once again I found myself considering what the point of me being alive was when I offered no value to anything.

I really didn't help my sanity thanks to a spur of the moment decision in September: I decided to join an online dating site and paid for a month's membership.

I've tried online dating before: Everyone is disablist. As you click through profiles you realise they all say:

No crazies.
No crazies.
No crazies.
No crazies.
No strange limps.
No crazies.

Obviously the spur of the moment decision to sign up didn't result in me meeting anyone. I didn't hear from even one person. But I'd paid for a month's membership so I stuck with it for the whole month; every day hating myself more and more. Partly for being so repulsive, and partly for being stupid enough to spend money on online dating knowing that all that would happen would be that I'd be reminded that everyone thinks I'm repulsive.

But back to the lack of productivity: The fact that I'd done nothing all year apart from a couple of TV and radio interviews was what made my presence on the 2013 Pink List such a shock. The year before it was an honour and a pleasure; but not a surprise. (I'd gotten advance notification from someone at the paper because they needed me to provide a headshot.) On my good days I'd done things that I felt proud of and I was honoured to have them recognised. Reading the Pink List again just now while getting the link to post here I sort-of expected to find 86 had gone blank because it had all been a mistake and I wasn't really supposed to be on there.

The year ended on a bacterial note. Given the frequency with which I usually get sinusitis I actually did pretty well in 2013. And I only had the infection for about 5 weeks before I got to see a GP for antibiotics. (I've had to put up with sinusitis for a couple of months before now.) Something else which sapped all my energy and left my splayed helplessly on the couch because the bacteria in my face were sucking all my spoons. I literally finished the antibiotics a couple of days before Christmas. So that was that, 2013 effectively over. And all I had to show for it was a lactose-free diet and the script for a film which will probably never get made.

There are several people I owe blog posts to; promises I made months ago but haven't had the energy to write. Yet. So far 2014 has been a bit of a crazy whirlwind of hospital appointments (they started on Jan 2nd and this is the first week all year without one). But hopefully - hopefully - I can get all caught up in the near future.

And on the subject of hopes: Please just let 2014 be a bit better than 2013. I know my life is always going to suck. But it'd be nice if I could have a year that sucked slightly less.

♫...It all keeps adding up, I think I'm cracking up...♫

I hate talking about my mental health. I mention the fact that I am depressed when I'm listing all my medical conditions or whatever. But I only talk about it in that detached, factual way. I don't usually go into the details of the thoughts in my head. I've learned from experience that nothing loses you friends faster than freaking them out by telling them that you don't know what the point of you remaining alive is.

At the weekend Giles Fraser wrote a Guardian article about how we shouldn't medicate having "a shit job or a shit home life". It's all stuff I've heard before when I've answered the question "why do you take anti-depressants?" with "because my life is terrible."

Would these people prefer it if I were dead rather than pathologising normal life events?

I've had depression on and off since I was about 8. And it was something that happened 5 years ago that really, truly, made me understand the difference between sadness and depression.

When my mum died I cried for days. I was grief-stricken, heart-broken, and sadder than I've ever been in my whole life. But, interestingly, I didn't feel depressed at all.

Although I've used the Black Dog metaphor once before because it fit what I was feeling at the time, I usually tend to think of depression as an unending night.

At night you can't go to the bank, because the bank is closed. At night you can't return phone calls because businesses are closed. There's no point in opening mail in the middle of the night because you can't make any phone calls the letter might require you to make until morning. You can't do housework in the middle of the night because the hoover or washing machine will wake your neighbours. In the middle of the night you can't phone a friend and say "hey, fancy meeting up for a cuppa?" Because A) They'll have work tomorrow. And B) Unless you want petrol station dispenser tea served through the night window: There's nowhere to go for a cuppa. At night all there really is to do is stare at the ceiling.

Depression to me feels like a night that never ends. Except the sun still rises and sets, the never ending darkness is inside my head. I can't go to the bank, or make a phone call, or open my mail, or do the housework, or ask a friend out for a cuppa because I feel too dark for such things. I just sit and stare at the wall.

When my mum died I cried and cried. But the sun still rose and set, even in my head. I was able to ring around funeral directors. I was able to phone the Peugeot garage repeatedly to harass them into fixing my fucking car because I really needed it. I was able to go to the bank to deal with mum's money. I was able to phone friends who'd also lost a parent because I wanted to talk to people who'd gone through what I was going through.

I was beyond sad, but I never felt that clinical depression darkness that I'm so familiar with. And I think the main reason for that was the amount of support I got. I spent most of the month following mum's death at my dad's house. There were always family members around helping out with stuff. When I came home for things like hospital appointments or to pick up my eventually repaired car there were always friends at my flat who'd come and bring food. I swear I didn't make myself a cup of tea for about a fortnight because there was always someone around to hand me a freshly-brewed cuppa.

That's such a sharp contrast to my normal life. Ordinarily the only human beings I ever speak to are the receptionists at my GP's surgery, my GP, the local pharmacist, and the doctors, nurses and receptionists at any of the 5 hospitals where I'm currently a registered patient. I'm such a frequent visitor to the gastroenterology clinic at my local hospital, and the rhinology clinic at the Royal National Throat, Nose and Ear hospital that I don't need to give my name at reception any more; they know who I am. I have no local friends to lean on for real life support, the only socialising I ever do is on social networks like Twitter where I engage with people who are scattered across the whole planet.

I can't be sure that such an unusual level of social support was the reason I didn't become clinically depressed in the immediate aftermath of my mum's death, but it certainly seems like the most obvious reason. In fact, it's the only thing I can think of.

But the things that do make me clinically depressed are exactly the kinds of things that Fraser believes people shouldn't receive medication for. I have a shit home life, no partner, and no job at all; never mind a shit one.

I don't take anti-depressants because they're forced upon me by pharmaceutical companies trying to enforce happiness. I went to my GP out of desperation because I couldn't carry on living feeling as awful as I did.

Yes, a great many of the things that make me feel low are down to social pressures. I don't feel a social pressure to have a compulsory smile on my face but we do live in a society in which people are pressured to have a job. Which is a huge problem for someone like me who is too ill to work. LBC (which is basically just a phone-in version of the Daily Mail) on in the Doctor's waiting room reminds you of the sheer number of people who think you're a scrounger and resent paying their taxes to keep you alive. You can't even go to the emergency dentist to get a broken filling fixed without being made to feel small when she asks you "what do you do for a living?" And this is just the social pressure angle, other issues with being too ill to work include: Never having any money, not having career satisfaction, and, of course, being ill all the time.

The fact that I live in a flat that's not accessible enough for my impaired mobility depresses me. Moving depresses me even more. In fact, it was living in the property before this one - the one that was a rodent infested hole the size of a cupboard - that prompted me to seek pharmacological help because I couldn't bear my living situation any more.

My absence of family depresses me. I have no partner, no children, no siblings and no mother. When my dad dies I will be absolutely and truly alone in this world. And don't bother suggesting that I might have found a partner by then: We all know that's never going to happen.

Being ill depresses me. The mobility impairment I've had all my life doesn't depress me in itself, but I can't count the number of times I've been reduced to darkness by people treating me cruelly because they're disablist bastards. Some of my physical health problems cause me to be depressed directly. There's a phase after a migraine called "postdrome" which can cause depression. You'd think I'd be happy that my pain had cleared up. But instead, after a migraine, all I can think about is how much I'd be better off dead. I try to remind myself that it's just the postdrome and I'll be fine in the morning; but it's hard to keep telling yourself that when the rest of your life is a fucking disaster.

I've failed at doing everything I loved. I failed at swimming. I failed at comedy. I tried doing an awesome Masters degree but never got to finish it because of my health. There is literally nothing in my life I can look back upon that I've succeeded at.

According to Giles Fraser, none of this list of misery warrants medication because it's normal to be sad when your life is terrible. And pathologising this normal response is just making Big Pharma rich. It doesn't matter that without drugs to boost my mood that I might not last long. Even just looking at this list of things in black and white makes me wonder what the point is of carrying on.

There are plenty of physical conditions that are a perfectly normal response to life's ups and downs that we medicate. Catching a cold is a perfectly normal response to sitting next to someone with a cold on the bus. We medicate colds with paracetamol and decongestants. Breaking your ankle is a perfectly normal response to slipping on an icy pavement. Should we not medicate that with painkillers? Or are the painkillers just pathologising a normal response to winter?

If it's OK to medicate physical responses to life's normalities that make you ill or cause you pain, why should mental illness or pain of social origin be treated any differently?

"Ableism"? Stop insulting me.

Historically it's been the case that the single word to describe disability-based discrimination in British English has been "disablism". North Americans have always preferred "ableism", but you didn't see it used by Brits that often. Sadly the word "ableism" is creeping further and further into British English usage. I've seen it used repeatedly by journalists and popular bloggers which validates its use; and every time I see it I feel hurt.

For much of the rest of this post to make sense you really need to go and read an article I wrote for xojane.com last November. I'll just finish this drink while you're reading that.






Back with me? OK, excellent. Let's crack on to why I find the word "ableism" insulting.

As you will have read, there are are two ways of considering disability. There's the medical/individual model in which a person with an impairment is seen as lacking in ability, and there's the social model in which a person with an impairment is considered disabled by social barriers.

The problem with the word "ableism" is that it's predicated on the medical model. The "blame it on their brain/body" individualised perspective of disability should be consigned to the history books and instead we need to focus on dealing with disabling barriers - from architectural to financial - that make life difficult/impossible for disabled people.

The word "sexism" refers to discrimination on the grounds of sex. It's discrimination that can happen to anyone of any sex whether they're male, female, intersexed, or have some other identity. Everyone has a sex and anyone can be discriminated against because of it. Though it's far rarer for men to be victims of sexism than anyone else. One might argue if a man can truly be discriminated against in a patriarchal society, but it's hypothetically possible.

The word "racism" refers to discrimination on the grounds of race. Everyone has a race and anyone can be discriminated against because of it. Again, one might argue that it's not truly possible for a white person to be a victim of racism in a society geared to the benefit of white people. But it's hypothetically, and legally, possible. There have been legal precedents set in the UK by white people bringing discrimination claims under Race Relations Act.

The idea behind the word "ableism" is that everybody has an ability level and anyone can be discriminated against because of their level of ability. In other words: If you're a person with an impairment on the receiving end of "ableism" then you have to be lacking in ability.

Imagine you and I are going to see a film together. We try to catch a bus to the cinema and the driver refuses to get the ramp out because he's an arsehole. After he shuts the door in our faces and drives off you yell at him "ableist bastard!" What you're doing there is that you're making the issue about my ability levels, rather than society's disabling barriers.

I am not intrinsically unable to travel by bus. Buses are a product of our society so making them difficult to access is a socially-created barrier. Buses could have been designed from scratch to be fully inclusive; but they weren't. It's only been in the last 15 to 20 years that we've seen any kind of wheelchair access on buses at all in the UK. As they stand now they only have one wheelchair space per bus which is still a hugely disabling design flaw for a couple who are both wheelchair users, or a parent and child who are both wheelchair users.

Then there's the fact that - with the current models of bus design - the onus is on the bus driver to not be a discriminatory dick. He has to pull up close to the kerb for the telescopic ramp to reach. He has to be willing to do his job and press the damn button to extend the telescopic ramp onto the pavement. He also has to be willing to do his job and ask any parents with buggies in the wheelchair space to fold their buggy: It's not called the "wheelchair space" for nothing. A lot of bus drivers just can't be bothered to not disable me and I'm refused entry to about 1 in every 5 buses I try to board. Which, I'll admit, is an improvement on a decade ago where the refusal rate was at least 50%.

Given that all these barriers are socially constructed; surely you can see why I'd be peeved at you shouting "ableist bastard" at the bus driver; which brings my ability levels into the equation rather than it being about his behaviour?

So I, like many other disabled Brits, use the words "disablism" and "disablist" instead. In the bus scenario above; if you shouted "disablist bastard" you would be correctly referring to him disabling me. And, of course, the fact that the design of the bus disables me too: If the bus was fully accessible without the driver having to do a thing my life would be much more simple.

In anticipation of the comments saying "but if 'ableism' puts the blame on your lack of ability, then surely you're saying that the sex and race of victims of sexism and racism is part of the problem too?"

Absolutely not. If the bus driver refuses to let me on because I am a woman then I am a victim of sexism. My sex is a matter of fact. If the bus driver refuses to let me on because I am white; then I am a victim of racism. My race is a matter of fact.

My lack of ability is not a matter of fact. As I have explained (or tried to) I am only perceived as lacking in ability by people who hold a medical/individual perspective of disability. I believe that I am disabled by social barriers (like badly designed buses, and bus drivers being dicks), not that I am intrinsically lacking ability.

Not all disablist discrimination falls under the realm of being a disabling barrier. I'm also sometimes subjected to disablist abuse from people who view my existence as a disabled person abhorrent. I get online commenters telling me that I should've been killed at birth to save taxpayers' money. That doesn't prevent me from getting on a bus or install steps at the entrance to the building I live in. But it's abuse motivated by the fact that I am disabled; therefore it is disablist abuse.

As I said in the xoJane article; it's up to people how they choose to identify. If they choose to consider themselves as a person with a disability rather than a person disabled by society; that's their prerogative. Likewise; if people choose to view themselves as lacking in ability therefore as victims of ableism then that is their choice.

However I'm an avid believer in the social model of disability. I hope I've shown how "ableism" is predicated on the medical model. (I have a thumping migraine. For all I can see to read it back off this white screen I might have just written "blah bla blah blah blah bla" over and over again.) Therefore; if you and I ever try to catch a bus together and the driver slams the door in our faces I would request that you describe me as having been on the receiving end of "disablism" not "ableism". Much like I would always ask you to describe me as a "disabled person" and never a "person with a disability."

Thank you.

♫...And I shouldn't be here, without permission. I shouldn't be here...♫

"I wish you'd never been born."

I remember the Sunday morning a couple of years ago when a well-known pro-eugenics tweeter was banging on about how babies with genetic conditions shouldn't be born. Despite claiming he was not disablist towards disabled people once they'd done the getting-into-the-world thing, all I could see in those tweets was that he wished I'd never been born because I have a genetic condition. He might have blocked me on Twitter so he can't see me; but I still see him RTed into my timeline frequently (something he said is actually 4th from the top in my timeline as I type). I'm constantly reminded that someone that thinks the world would be a better place without me in it is so well liked among the people I respect enough to follow on Twitter.

I remember all the times I've read that "parents on benefits shouldn't have kids. They shouldn't have kids other people will have to pay for." That includes my parents. So these people are saying that I should never have been born because my dad was forced out of work and onto benefits by impairment not long before I came along (my mum became a housewife when she married my dad because that's what women did in the 70s). I haven't just read it in the right-wing press. I've heard it from people I know. I've even heard it from other disabled people.

They may not have directly used the words "Lisa Egan should not be here," but it was what I inferred from their statements.

I remember the times my father said it to me when I was growing up. He was, and still is, someone that demands to be the centre of attention at all times. When I was a child my mum prioritised me over him and he resented the little brat getting more of his wife's attention that he did.

It's a powerful statement that haunts you; knowing that people think you shouldn't be here.

I remember a very long time ago seeing a mother on the news with her young child saying that if she'd known her daughter was going to have Spina Bifida she'd have had a termination. That child knows that not only is she unwanted, but she's so unwanted that her mother desired to tell the country about it. Her main passion was dancing to pop music; and at her age (IIRC she was about 4) that should have been all she had to worry about. She shouldn't have had to have heard from the people closest to her that they'd prefer her not to be around.

This week there have been 11 living children hearing all about how they shouldn't have been born. In the unlikely event that there is an afterlife where you look down on the world you left behind; there are a further 6 children hearing the same words.

The press is full of stories about how Mick Philpott's children were only born to milk the welfare state. Right wing commentators are queueing up to appear on the news to talk about how families shouldn't have so many children. There are, of course, plenty of people claiming that people living on benefits shouldn't be having children at all.

The most hurtful thing has got to be that these 17 children have been singled out by someone at the heart of government, the Chancellor, as being "a lifestyle" that needs to be "handled". Not human beings deserving of respect. Not people that have lost siblings. Not lives that have been cut short. But a problem that needs to be "handled" by government.

When I've read in the press that parents on benefits shouldn't have kids I knew they weren't talking about me directly, they were talking non-specifically about a group of people I happen to belong to. The same when I read tweets about how babies with genetic conditions shouldn't be born. But this week, all week, there have been 11 children hearing very loudly and clearly every time they turn on their TV that they - those children whose father is Mick Philpott - should not have been born.

I can't even imagine how it feels to be told on the front page of every paper, and on every news bulletin, that you - specifically you - should not exist because of someone you happen to be related to. Someone you didn't choose to be related to. And at a time when you're grieving for the loss of your siblings to boot.

♫...Pretty in pink. Isn't she?...♫

I want to say "thank you" to those of you who put me on this year's Independent on Sunday Pink List: Their annual list of the most influential LGBT people in the country. There are a couple of people I need to give extra special thanks to.

Firstly to Eleanor for asking the question "How do we get a crip on the list?" after reading last year's and noticing how very non-disabled it was. Extra thanks also need to go to Goldfish and DavidG for actually asking people to vote for me. It was such an honour that people felt so convinced that I should be on the list that they not only filled in the nomination form themselves but actually said to other people "look: Lisa should be on that list so vote for her. Got it?"

The blurb describing me is quite hilarious. "Bravery and experience"? I've been known to phone my parents just to scream at them because my cat had given me a dead mouse. And "experienced" makes me sound like the town tart. But it's genuinely nice to be described as "popular" because so many people felt I should be on the list. It's the only time in my life I will ever get called that. Ordinarily "popular" would be the last word that'd come to mind when describing me. "Weird girl who sits in the corner on her own staring at her shoes" is usually more apt.

In the end it turned out that I was amongst company: Not only am I on the list but there are Paralympians at number 4 (Lee Pearson) and 100 (Claire Harvey). This is still, of course, not representative of society as a whole. Around 18% of the total population have some kind of impairment and that's likely to be slightly higher among the gay community because of the increased incidence of mental health problems and the rates of HIV. With that in mind, there being 3 disabled people on the list is a start, but it's not enough.

Of course, it's highly likely that a couple of the other 98 do have some kind of impairment like dyslexia or bipolar disorder but aren't out about that and/or don't identify as "disabled". That's absolutely their right to identify how they choose to and to be in control of what information they put into the public domain. But it's also important to be out. That piece by Stella Duffy is about the importance of being out as gay - just like the list is about the importance of being out as gay, bi or trans - but the need to be out about belonging to a certain group is an issue that spans all minorities.

On the other hand you could make the case that there shouldn't be any disabled people on the list because we have such a low social status and it is supposed to be the most "influential" queers in Britain. I'm listed as a disability rights activist but if I seriously had any kind of influence in our society then the Welfare Reform Bill would never have become the Welfare Reform Act because the public would have given a crap. But then you end up with a circular situation where disabled people lack influence because we're ignored by the media because we lack influence. Putting some disabled people on the Pink List is an important way of breaking that circle and acknowledging that disabled people exist.

Another reason it's so specifically important to acknowledge the existence of disabled LGBT people is because of the common misconception that we don't or shouldn't exist and the double discrimination we face. For the most part disabled people are viewed as being asexual or it's believed that we should be asexual. In 2008 70% of people asked told The Observer that they wouldn't shag a cripple and I've never seen any indication that gay people think any differently. If you visit a lesbian dating website you'll see that almost every profile states "no crazies". I even saw one "no strange limps" before deciding it was just futile and that I'd be better off watching CSI and wishing Sara Sidle were mine.

I think LGBT people with learning difficulties are probably the most oppressed of all. We live in a culture that likes to infantilise intellectual impairment ("he has a mental age of 6...") despite the fact that an adult with learning difficulties is just that: An adult. People who have the capacity for consent should be able to have consenting sexual relationships. Many straight people with learning difficulties encounter barriers with getting people the people in their lives to understand that; the process of coming out as gay can be nigh on impossible. Last year a court banned a man from having sex because he had a low IQ because he might get a girl pregnant. I'm pretty sure that that wasn't going to be a problem for the man he was in a relationship with.

Another very specific issue affecting LGBT disabled and older people is the problem of homophobic carers. If you're dependent on someone to get you out of bed and put you in your wheelchair, to feed you and to give you fluids and medication then your life can be endangered by being out. Direct Payments and Personal Budgets allow one the opportunity to choose who you employ to assist you, but not everybody has that as an option and some people still have agency carers inflicted upon them and they get no say in who is being sent into their home.

Such grave issues make the lack of physical access to gay bars and clubs seem to pale into insignificance. But improving visibility of LGBT disabled people, by letting us get onto the dancefloor with our peers, we can start to break down these barriers. Improving visibility of gay people improves attitudes towards gay people; it's a logical extension to accept that improving visibility of gay disabled people will improve attitudes to the minority within a minority. Those of us who are in a position where it's safe to be out need to do so to improve social attitudes and make the world safer for those who would be endangered by being out.

I know I've gotten a bit too old and boring for clubbing until 5am but I still can't think of any gay bars/clubs in London that are fully accessible. I can think of one or 2 with a bar area that's step free, but with no such thing as accessible toilets. Which is really just want you need when you're drinking alcohol. My local gay bar is under threat of closure. I probably should give a shit about the closure of a beloved community hangout but I really can't muster up concern given the flight of stairs to get into the place.

Three disabled people on the Pink List is such an important step towards dealing with these double discrimination issues, but it is only one small step. There's still so much more change we need to see. Hopefully next year we'll see further strides towards towards equality in both the list itself and the year building up to it. For now I'll just smile about the fact that Paralympic dressage gold medallist Lee Pearson came one spot on the list above Olympic dressage gold medallist Carl Hester. And about being the 78th most influential gay.

♫...Come and take a swim with me...♫

During our recent spurt of summer, having spent 3 days splayed helplessly on the sofa, I decided I wanted to go for a swim in the open air to cool down a bit. Being probably the only lesbian in London to have never been for a swim in the ladies' pond on Hampstead Heath I decided that it would be the perfect place to cool off.

Obviously my next step was too Google "Kenwood ladies' pond disabled access". I got nothing. Zip. Zero. Nada. The best result was a list of all the pools in Camden: It had details of the pond on the same page as the details for Holborn Oasis and the Oasis blurb mentioned the access at that pool.

So I was still none the wiser about access at Kenwood. Next I did a Google image search for the pond to see if I could see what the access was like. I could see it had a deck with ladders into/out of the water. I can't do ladders. I could see I'd be able to get in OK - you've got gravity on your side - but I didn't really fancy my chances of getting out again; the freeboard was just too great.

Still being hot and still wanting to cool down I decided to just go there and have a look at what the access was: Maybe the freeboard wasn't as big as it looked in the pictures and I could manage? What if the ladder was at an angle so I could shuffle up the steps rather than an unmanageable vertical ladder?

After looking at this map I decided the most sensible place to park my car would be on Millfield Lane in Highgate.

Foolishly I assumed there would be maps of the heath on signs around the place that I could use to then find the way from the car to the pond. Yes, I know I've lived in north London for 9 years, but I don't know the heath like the back of my hand. I never go there. Manual wheelchairs and steep hills aren't a fun combination. But I do drive past the heath all the time so I've noticed the signs at all the entrances and assumed most of them had maps on them. I assumed wrong.

"Never mind," I thought. "Google 'Hampstead Heath map' on your phone."

No signal up there. I'd recommend people go up there with the map pre-loaded on their phone for reference. If you're on Orange anyway.

So I went wandering. Despite the abysmal gravel paths and hills so step I genuinely didn't know if I could make it to the top: I actually enjoyed myself. It was beautiful wandering around in all the sunshine.

I did eventually find the ladies' pond after 2 hours of meandering. At 8:15pm. It closed at 8:30. By the time I'd pushed the last few metres over horrific paving and gotten changed I would've literally had no more than 60 seconds in the water. But instead of just going back to my car I did go all the way to the pond to scope out access for future reference so it wasn't a completely wasted journey.

Having spent about an hour scrutinising photos to try and work out whether or not I could manage to get out of the water I couldn't believe the first thing I saw when I rounded the corner to see the deck: A hoist.

Making things physically accessible is massively important. But something can never be truly accessible unless you provide information about access. I'd wager most disabled women have never considered going for a dip there because there's no access information published on the web so they assumed there were no adjustments.

That's why I'm writing this post. Not because it's an interesting topic that I think will engage readers, nor because I'm seeking catharsis through writing out the thoughts in my head. This post is simply about information for the next woman who Googles "Kenwood ladies' pond disabled access".

Of course, access isn't just about getting into and out of the water. You have to start with getting to the pond. As you can see on this map, there's only one path you can take to get to the ladies' pond (14). Whether you're coming from the north or south you have to take the path I've painted pink:

The quality of the paving is truly abysmal:

They're just two rather arbitrary shots taken along the path. I kept getting people coming up behind me asking if I needed help. The terrain is so uneven that you couldn't accept help if you wanted to because within seconds your front wheels would catch on something sticking up, the person would continue pushing forwards, and you would get tipped out of your chair and onto the floor; chin first. You just have to make your own way very slowly and carefully.

Should you make it to the pond without ending up in an ambulance the access improves greatly. As you can see in the photo of the hoist: The area around the pond itself is concrete which is perfectly easy to push across. There's an accessible toilet, but unfortunately there's nothing to sit on in there to get changed. There is seating outside for getting changed, but I would imagine that for people needing to remove catheter bags and so on while getting changed that that then poses the problem that there's also no toilet by the seating!

I went back the day after my exploratory mission and this time actually got to swim. Being an unheated pond it's not suitable for people whose conditions are exacerbated by coldness. You can check the water temperature before you leave the house on the City of London website. It was a boiling hot day and people with osteogenesis imperfecta are prone to overheating. So for me getting into a pond that was 18°C was lovely.

There's no water shallow enough to stand in so don't do what I foolishly did and wait until you're in the water before putting your hat and goggles on. I ended up jumping back onto the hoist seat for a sec to free up my hands for putting them on.

Something else I didn't consider with not being an open water swimmer was goggle fog. In a pool modern goggles don't fog too badly. But in a pond there's a difference of about 20°C between the temperature of your face and the temperature of the water. Not having any anti-fog stuff meant that I had to stop every few strokes to de-mist because I couldn't see where I was going. Lesson learned for next time.

Goggle fog did give me the impression that it's not an overly accessible experience for people with visual impairments. Leaves and other pondy scum stuff loiters around the edge so you want to avoid that. You need to dodge buoys and at one point I had to give way to a couple of ducks. I can imagine that finding yourself fighting with an angry duck you didn't see coming isn't fun. Obviously being a pond rather than a pool there are no high contrast markings on the bottom to guide. Apparently they do sometimes have a lane rope out that you can swim along, but the banks of the pond don't look that easy for a tapper to stand on. And as I said before: You probably don't want to be getting too close to the edge unless you want to be picking pond weeds out of your ears.

Being a pond rather than a pool; the water is full of stuff. You find yourself swimming with ducks and fish, which means that also in there is duck poop and fish poop. While you're treading water to de-fog your goggles you'll get weedy things wrapped around your ankle. So it's quite remarkable that upon getting out of the water you feel cleaner than you do when you get out of a swimming pool. And it's not just a matter of perception: Cleansing my face and then looking at the cotton wool I noticed that less dirt came away than when cleansing my face after a swim in a chlorinated pool.

As someone that reacts badly to chlorine being able to swim in a body of water that isn't full of bleach was a real plus. I can swim in a pool once a week at most or the chlorine is just too much for my knackered sinuses. It was lovely to be able to swim without having to suffer streaming eyes and nose afterwards.

Given how not gross I felt I decided to wait until I got home before having a shower rather than having to fuss with figuring out a plan for how to manage potentially inaccessible showers. Apparently they have both indoor and outdoor showers but there's a step up to the indoor ones. I didn't find out whether or not they have a shower chair to sit on to use the outdoor showers: Obviously you can't sit in your wheelchair in the shower.

Will I go back again? Almost certainly. Obviously I'm not batshit enough to be swimming in there in January (it's open 365 days a year) but it was an enjoyable way to cool down on a hot day. I just hope the Corporation of London tarmac that bloody path before I get tipped out of my wheelchair, land on my chin and break my face.

Priorities

First they came for the disableds,
and I didn't speak out because I wasn't disabled.

Then they came for the NHS,
and I didn't speak out because I wasn't sick.

Then they came for the grannies,
and I didn't speak out because I wasn't old.

Then they came for my pasties,
and suddenly I gave a crap.

♫...I'm sitting down here, But hey you can't see me...♫

I don't often do angry. I'm quite lazy and anger is a very energy-intensive emotion. But International Women's Day today is making me really fucking angry. Why? Because I've been erased from it. Or that's what it feels like.

I've read so many posts talking about how women are hardest hit by the current government cuts. Which isn't entirely true. It's something I've ranted about a bit before. Yes, non-disabled women are more affected by cuts than non-disabled men. But then disabled men are harder hit than non-disabled women, leaving disabled women right at the bottom of the shit heap. No-one is talking about this despite the fact that around 18% of the population have some kind of impairment. Roughly one in 5 women are being blanked by today's discussions.

I read a piece about how feminism doesn't represent working class women because all feminists are intelligent and articulate and working class women aren't. So does that mean I'm not intelligent or that I'm not working class? Which part of me must be erased so I fit neatly into what I'm supposed to be? My only pretension to being middle class is that I occasionally eat houmous.

My class and my intelligence are both affected by my impairments. I've always had impaired mobility but until I was 26 I was perfectly healthy; I just had a crappy skeleton. Had I not become chronically ill I'd probably have socially mobilised my way into middle classedness by now. Instead I live on benefits, in a council flat, and buy my clothes in supermarkets because that's all I can afford. And people with OI are usually above average IQ. Though AFAIK it's not known if that's a quirk of genetics or just because we spend our childhoods so bored at spending so much time waiting for x-rays that we can spell "danger" and "radiation" from repeatedly reading the sign on the door at about the same age our peers are getting to grips with "cat".

I also read a piece about how offensive it is to women that the language of mental illness is quite women-centric. "Lunatic" has connotations of the menstrual cycle, while "hysterical" pertains to the uterus (think hysterectomy). As a woman with depression I'm pissed off that women without mental health problems are supposed to be offended at being compared to me.

There are calls for women to rise up and challenge the patriarchy. Would the revolution be accessible to me? I doubt it considering I'm not even allowed to be part of the debate.

You might also like... 'Caitlin Moran and feminism’s ableism problem' on The F Word

♫...When I look at the television, I want to see me staring right back at me...♫

Been doing some media whoring the last few days talking about the blue badge reforms that came into effect yesterday.

First there was BBC Breakfast on the tellybox. This was followed about 15 minutes later by Five Live (the beeb getting the most from the money spent on having a car take me to Television Centre):



BBC Sussex/Surrey (they were both broadcasting the same show today) heard Five Live and subsequently wanted me on their show this morning. What I didn't know in advance was that I'd be debating with transport minister Norman Baker MP. Here's what happened:



Gutted I didn't get to rebut his final speech. C'est la vie I suppose.

Thanks to @uwitness and @goldfish for tech help with making audio happen.

Ricky Gervais and the politics of Mong

I've just realised how long it is since I last blogged. I knew I'd been ill for a while but I didn't realise it'd been nearly 6 months.

You know that feeling when you've eaten a huge, huge, meal (e.g. on Xmas day): You feel exhausted because all your blood has rushed to your stomach leaving no energy for the rest of your body to do anything. But at the same time you can't sleep because your digestive system is working so hard. And of course you can't force any food down because you already feel like you're going to explode. Normally the sensation only lasts a couple of hours until your system has made good progress of dealing with the oversized meal.

I've felt like that since the beginning of June. I've spent much of the summer depending on meal replacement drinks because I couldn't force any food down. I've had no energy to do anything (e.g. blog) because my digestive system has been being so irrational and I've also not been sleeping because of the digestive mania which has been increasing the sensation of exhaustion.

Despite the fact that I'd much rather be lazing, watching telly and eating Cadbury's Deadheads (because they're the only thing I've managed to eat today without ending up bent barfing over the bog within 60 seconds) I felt I had to quickly comment about this week's Ricky Gervais mong twitstorm. Everyone else is blogging about it and I just love a bandwagon.

It seems a lot of people don't know the origin of the word, so in a nutshell: It's an impairment-specific insult and refers to people with Down's Syndrome. In the 1860s Dr John Langdon Down decided to classify people with learning difficulties by "which country they looked like they came from" (really!) and he thought people with an extra 21st chromosome looked like they came from Mongolia so named the condition 'Mongolism'. (Later renamed after Dr Down because the Mongolians took offense.) So 'mong' isn't really associated solely with people with DS, it's also a slightly racist term with regards to citizens of Mongolia.

Gervais apparently thinks he has some kind of "right" to reclaim the word "mong"; despite the fact that - as far as I'm aware - he does not have Mongolian citizenship. He maintains that the definition of mong has moved on and it's no longer anything to do with Down's. Though that argument loses credence when you realise that 4 hours later he posted a tweet using the word "twongols", clearly derived from the term "mongols" further establishing the link between "mong" and the outdated diagnosis of mongolism.

It's been quite big news with most papers and radio shows discussing whether or not "mong" is offensive to people with Down's. I've seen quotes from Nicky Clark, Richard Herring and Christina Martin on the offensiveness debate. Odd thing is: They're all non-disabled. Don't get me wrong, they're all great disability rights activists and I value their contributions to making the world a slightly better place. I'm constantly pointing out how much we need non-disabled people to give a crap about disability issues. So I'm gonna repeat it and italicise it this time to really drive home my point: they're all great disability rights activists and I value their contributions. And I have no issue with them giving their opinions on these issues when asked for them.

But it's odd that when the subject is "is mong offensive to people with Down's Syndrome?" That the only people being asked for their opinion on the subject are non-disabled disability rights activists. Radio presenters would never ask "is using 'gay' as a pejorative offensive to homosexuals or has the meaning of the word changed?" Without including LGBT folk in the debate. So why aren't people with Down's Syndrome invited onto the radio to discuss how they feel about Gervais's words? Why is it only non-disabled people who are being asked for their opinion? That's the bit that bothers me; not that non-disabled people are giving their opinions, but that people with Down's are not being asked.

Not only is the exclusion of people with Down's from a debate about Down's almost as problematic as Gervais's original tweets, it also seems like a circular discussion that we'll never reach the end of. People without Down's can express their opinions but until we ask people with Down's Syndome "does mong offend you?" We'll never have a definitive answer to the question "is mong offensive to people with Down's Syndrome?" AOL can run polls asking the general populace their opinion but until people with an extra 21st chromosome are included in the debate it's all very abstract and inconclusive.

I'd be particularly interested to hear the opinion of actor Russell Ramsay who was in an episode of Extras so having worked with Gervais probably has an insight into both sides of the debate. (Random fact: When I was a child my parents would drag me kicking and screaming to church every week. I went to Sunday School with Russell. Haven't seen him in at least 20 years though.)

Despite the fact that we haven't yet got a conclusive answer as to whether or not people with Down's find "mong" offensive today (because they haven't been asked) the history of the word is clearer: It's historically a term of abuse and a form of hate speech. Disablist hate crime is on the up due in no small part to the bullshit rhetoric being peddled by the government and press in attempt to whip up support for welfare reform. People are getting called a "scrounging cunt" in the street or being followed down the road by someone shouting "fucking DLA stick" at them. That Gervais is using an historically abusive term so liberally and encouraging his fans to use it is pouring fuel on the already raging fires of hate. Ironically Gervais is calling people who disagree with him "haters" and stipulating that they only disagree with him because they're jealous of his success. If being successful means that you feel superior to members of oppressed minorities and have a licence to use abusive language then I'd rather remain unsuccessful but a decent human being.

♫...So scared of breaking it that you won't let it bend...♫

There's an awareness day for everything these day. And so today is that day for my mobility impairment. Today is Wishbone Day, raising awareness of osteogenesis imperfecta.

There are lots of mythconceptions about OI around. Most notably the lies peddled in the dreadful M. Night Shyamalan film Unbreakable. Despite it being 11 years old, and you'd think most people would expel a film that dire from their memory, I still get people saying "oh, like in Unbreakable?" When they find out I have OI.

No. Not like in Unbreakable. For starters when Samuel L Jackson "explains" OI in the film he claims that type I is the mildest and it's a spectrum through to type IV which is the most severe and usually fatal at birth if not before (no mention of types V to VIII but I think at least some of those hadn't been discovered then). I am a 31 year old type IV. My mum who was also a type IV made it to 70 before dying from her familial predisposition to drop dead from heart failure at a reasonably young age. OI was not a contributing factor in her death.

It's actually type II that's fatal. Type III is usually pretty severe. Type IV varies from very mild to almost as severe as type III. Type I is different to the other 3 well established types. Bone breakage in types II, III and IV is the result of poor quality collagen. Collagen being the protein that provides reinforcement for bones. Type I is the result of a lack of collagen rather than the right amount of crappy quality collagen so it's quite different to types II - IV. There are type ones around who've had more fractures than me so to claim it's the "mildest" type is untrue.

There are many other inaccuracies in the film. By casting a non-disabled actor to play a person with OI he was, unsurprisingly, lacking all the physical characteristics of the condition. Elijah says he's had about 50 fractures; roughly the same number as me. Medical care of people with OI is constantly improving and Elijah was much older than me so he would've had worse medical care than I did when I did the bulk of my breaking as a child. Between not being very sturdy to begin with and then being constantly broken; bones with OI tend to bend. The bones in my right forearm have a bend in the middle of about 80°. The bones in my left leg are bent to about 30°. Had a I received the medical treatment a child with OI would receive today my bones would be less bent. They probably wouldn't be as straight as a person without OI's, but they'd be straighter than they are.

Elijah, being roughly the same as me in severity, should have bent bones. Bones bent more than mine because even less effort would've gone into straightening them. Samuel L Jackson not having OI has perfectly straight bones. Total credibility fail.

The other glaringly obvious characteristic fail is the eyes. Because collagen is the protein that makes the whites of your eyes white, most people with OI have blue scleras. Most, but not all. However, the people that do have white scleras are not type ones. Types ones always have blue scleras (like I said, it's different to the other types). SLJ does not have blue scleras. They could've made his scleras appear blue of course, in many films and TV shows you have demons and other monsters with completely black eyes. Tinting SLJ's scleras wouldn't have been too hard, whether through contacts or SFX in post-production.

So, yes. My impairment is nothing like Jackson in Unbreakable. Also, spending a lot of time in hospital as a child doesn't turn you into a terrorist.

Unbreakable isn't the only film to peddle poor facts about OI. Amélie is considered by many to be a piece of loveliness. It made me want to punch my TV screen. Amélie's neighbour with OI lives in a padded flat. Though perhaps I could do with his padded tellybox so that if I did end up punching it in frustration I'd be less likely to break my fist.

People with OI do not live in padded houses. There's no point. Breaking your bones is such a random thing. I've fractured my spine while sleeping on something soft and padded whilst conversely I've gotten drunk, fallen down a flight of steps in a club, and not broken a thing. Over-cautiousness can actually result in a reduction in bone density so living in a padded house can make you more, not less, likely to break.

I'm a big fan of forensic TV shows so obviously I watch Bones. OI has cropped up a couple of times, once just as a mention with regard to some ancient bones that Brennan had been looking at. In the episode "The Truth in the Lye" in season 2 they found some bones in a bathtub on a building site. Brennan looked at the bones under a microscope and noticed the lack of collagen.

The big fact fail here was with regard to reproducing. Bones said that in all the other types OI is the result of a spontaneous mutation but sometimes it's inherited in type ones. Hello! Type IV child of a type IV right here! And I'm not unique, I know tonnes of types IIIs and IVs who've had kids. When a person with OI has a child there's a 50% chance of the child inheriting it. Yes, OI is often caused by a spontaneous mutation. In the case of my family my mum was the mutant and I inherited it from her. But claiming that it's only type ones that breed is ludicrous.

The most common storyline when OI crops up in film and TV is that of parents being falsely accused of abuse. It's been done in Home & Away, ER, Casualty and many more shows.

It's an incredibly serious issue and unlike the other OI storylines I've mentioned it's one that's usually fairly realistically represented.

The Home & Away storyline was in the days when Pippa had a house full of foster kids. She fostered a child who'd been taken away from his parents because his recurrent broken bones had led to his parents being accused of abuse. Whilst in Pippa's care he broke his arm. Pippa took him to the local hospital where he was treated by a doctor who didn't sleep through the lecture on OI in her medical training. She diagnosed him and he was returned to his parents.

In ER Carter treated a kid who'd been brought in with a persistent cough. A chest x-ray revealed numerous broken ribs. Carter ordered full body x-rays and found that the kid had old and healed, currently healing, and fresh fractures all over. Carter called the police and social services claiming the mother had been beating the child. Carter performed a lumbar puncture on the baby and then took some more x-rays. Looking at the second set of x-rays Carter noticed that there was a new rib fracture not on the first set of x-rays and realised he'd broken one of the kid's ribs whilst doing the lumbar puncture. This resulted in him diagnosing OI and calling off the hounds.

In real life however, these stories don't always have a happy ending with the kids being returned to their parents. In some cases the children end up being adopted before diagnosis and adoption orders cannot be undone. Even when the child is returned to the parents it's often after the psychological scars of the child being fostered have been inflicted on both parents and child.

These days there are many diagnostic tests available for OI, there's no need for families to be destroyed. But it still happens because doctors don't think to check for it and social workers - in this target-driven post-Baby P era - don't mention it because they're desperate to whisk kids away from parents to meet their targets for kids fostered.

Wishbone Day could be a wonderful way to target doctors and social workers, to make them aware of OI, the clinical presentation, how to differentiate it from abuse, and how to test for it. But from what I've seen that level of awareness-raising aimed at the people who need it isn't happening. It's seems the thrust of Wishbone Day is "wear yellow and do the Facebook status meme," which isn't going to raise awareness amongst the people that need to be made aware. I'm aware that even this post picking apart media myths of OI is slightly redundant because it'll mostly only be read by people that know me so aren't gonna be taken in by Shyamalan's bullshit. So I'm being no more helpful to the cause than those who are simply changing their Facebook status and I throw my hands up and admit that. We need awareness targeted where it matters: A&E staff and social workers. Until that happens I think Wishbone Day is a bit wishy washy.

The #no2av campaign's preying on the uneducated

I've just been talking to my dad on the phone. He has a postal vote so has already voted in the referendum.

My dad will be 77 in July. He grew up long, long, before disabled children had any right to be educated. He was ignored in mainstream school and then sent to a segregated college where he was taught nothing much. No-one taught him to read until a family friend took on the challenge when he was 21.

In addition to poor literacy due to no-one bothering to teach him until he was an adult he's almost certainly dyslexic. They didn't do much diagnosing of that during World War II.

In addition to that it's only been in the last 2 and a half years since my mum died that he hasn't had anyone living with him to help him understand things like the instructions on a polling card. He can read well enough to read the names on a card and identify which are his preferences. He can also count to three so would be capable of ranking his preferences in order.

One of the "no" campaign's loudest cries is that AV is too complicated for the masses. That you need to be some kind of genius to work out how to fill in a polling card under AV.

Out of fear that he wouldn't understand how to vote under AV; out of fear that AV is too confusing and too complicated, my father voted "no".

I am furious that the "no" campaign are preying on people like my dad by telling them they're too stupid to understand AV.

If my dad really believed that FPTP was a better system than AV I'd respect his choice. But that's not why he voted "no". The "no" campaign took advantage of his poor education, of his illiteracy, and his almost certain dyslexia by telling him that under AV he wouldn't be able to understand his polling card. They told him he was stupid and he believed it.

How many more people are going to be tricked into voting "no" because the campaign are preying on their poor education, their learning disability or insecurity about their intellect and telling them that they're just not smart enough to get it?

Pride and St George

If you've been hiding under a rock and not seen the flags everywhere, it might have escaped your attention that Saturday was St George's day; a day that's typically associated with racists and bigots, the EDL and the BNP.

This year I've seen several attempts from decent people to reclaim the day from the fascists, to take pride in England being the diverse place it is. After all, St George was Palestinian so he seems a bit of an odd role model for the EDL to revere.

The trouble is that I couldn't be less proud of being English.

• Universities in England are charging ever increasing fees, this is not true for all other parts of the UK. The exorbitant amounts are a major disincentive for people from a background like mine to get an education.
• English older and disabled people are having to pay more for less home care. This isn't true of all of the UK, Scottish older people get free care.
• People living in care homes are facing bigger bills for less safe care homes and DLA recipients living in care homes will be losing their mobility component from 2013.
• The government are completely dismantling the welfare state. Disabled people are killing themselves because they can't afford to live.
• The government is planning to completely dismantle the NHS in England. I had one experience of NHS outsourcing to private healthcare providers; I waited a year to have my bust ankle MRIed.
• Stories of police violence seem almost daily while hate crimes against disabled people are frequent and rarely appropriately handled by the authorities.
• It's the 21st century and gay people can't get married.
• The government is considering scrapping our anti-discrimination legislation.
• We have misogynists, homophobes and disablists in parliament.
• Our newspapers tell daily lies about benefits claimants, which results in an increase in the aforementioned disablist hate crime.

And that list barely scratches the surface.

You could argue that the decisions made by the government don't necessarily reflect those of the populace as a whole, that the lies printed in the press aren't emblematic of the opinions of the nation. Except they are. We're a democracy, we voted for this government. Look at the sea of blue across England. It's the English that voted Tory rather than other parts of the UK. As for the press? If people stopped buying the lies, the papers would stop printing them.

So could someone, please, tell me why I should be proud of England when England so clearly isn't proud of me?

♫... Pull up to the bumper, get out of the car...♫

Our ever so delightful Mayor of London has come up with another plan to make the nation despise people who don't "look disabled" just that little bit more.

Writing in The Torygraph 2 months ago he proclaimed that the only people who really deserve Blue Badges are wheelchair users, which will no doubt pour further fuel on existing fires around who should be eligible for what.

If you spend much time hanging out in crippy areas of the web you'll come across debates around who it is that needs spaz parking spaces the most: In the red corner you'll have the walkies who need to park near to the door of a store because their ability to walk is extremely limited and if they can't park near the door they can't manage to do their shopping. While over in the green corner you'll have wheelies who need the wider bays to get their chair alongside their car to transfer into it.

In fact the walkies vs wheelies parking debate was even the B story in an episode of House a few years ago when a wheelchair-using researcher got a job at the hospital and Cuddy re-allocated House's parking space to her.

I should make clear that not all disabled people are so selfish that they think that only people with their flavour of impairment are genuine and everyone else is on the take; but sadly there are sufficient people so blinkered that they can't see someone else's perspective that it's a debate that'll go on for years to come. And BoJo just put his PomPoms on to encourage that battle. Presumably so disabled people will keep fighting amongst themselves rather than uniting and turning their energies against him around issues like all the tube accessibility upgrades he cancelled.

I see both sides of the debate: I use a wheelchair but I also walk a bit. Ordinarily when parking I need room behind my car to get my wheelchair out of the boot and assemble it. But there are occasions when I walk away from my car, like a couple of months ago when I had to go to the supermarket shortly after dislocating my shoulder. Walking is excruciatingly painful for every joint in my feet and legs - hence the usual wheelchair usage - but given the state my shoulder was in on that occasion, pushing my wheelchair would've hurt even more. To make the supermarket doable at all I needed to be able to park right by the door to minimise the distance walked.

However, even when I walk I'm still visibly disabled. I have an extremely pronounced limp, I'm of restricted growth and just one glance at my ankles will tell you that ankles aren't supposed to be shaped like that. But there are genuinely disabled people who are invisibly impaired who are no doubt who Mr J has in mind when he says:

the driver reverses into your spot and bounds out, whistling, remote-locking with a backwards squirt of electrons.

I don't remember him, he died when I was 2, but my granddad had an Orange Badge (this was long before they became Blue Badges in 2000) because his lung problems caused him to struggle to walk. Apparently for the first few steps after getting out of the car he looked quite sprightly. It was only after a few steps that the war veteran began struggling to breathe. But he would've been "looking normal" long enough to press the central locking button (if they'd had central locking in his lifetime) thus be the recipient of Johnson's suspicions.

Gardner and Johnson propose that wheelchair users get an extra badge and "special" bays that can't be used by non-wheelchair using disabled people. Would I need 2 badges, one for the days when I'm using my chair and one for the days when I'm not? Because I can walk a little bit would I be ineligible for the "W badge"? If so, then Gardner would be ineligible too; we've all seen him using a zimmer on the telly rather than his chair:

Boris also seems to have some trouble understanding who is actually eligible for a Blue Badge. He constantly refers to Blue Badge holders as "disabled drivers" and, yes, drivers do make up a significant number of BB users. But there are also a great number of BB holders who don't or can't drive. I think I was 5 when I got my first badge. The general minimum age has since been lowered to 2 but children younger than two can still get a badge if the child either:

• must always be accompanied by bulky medical equipment which cannot be carried around without great difficulty, or;
• needs to be kept near a vehicle at all times to get treatment for a condition when necessary

And obviously children that young can't drive! Then there are people who are old enough to drive but can't. My dad can't even push his wheelchair in a straight line at less than one mph, you wouldn't want him driving a vehicle that can do 100mph. Despite being driven everywhere by other people he still needs to park in Blue Badge bays because of the space needed to deploy the lift on his wheelchair accessible van. The argument of "but the driver could drop him off and then park the vehicle elsewhere," doesn't really work when someone takes as long to get out of the vehicle as my dad. Then of course there's people who can't be left alone while the driver parks the car somewhere else because they need constant assistance/supervision.

I do agree with Johnson that Blue Badge fraud is a huge problem. 6 years ago I blogged when I fell victim to Blue Badge theft for the first time. A year later I got a phone call from the police telling me that the badge had been found during a routine 'stop and search'. This was around about when I fell victim to Blue Badge theft for the second time. My car was broken into a third time later that year, but this was after my parents had bought me a Blue Badge lock for my birthday so the prospective thieves couldn't actually get the badge. I'd be thrilled if there was a clampdown on fraudulent BB use because if it were harder to get away with using a badge that isn't yours then I'd have to pay my insurance excess a little less often.

Parking can be incredibly difficult. Take my local Sainsbury's as an example. They have 7 Blue Badge bays on the surface and 296 regular bays in their underground car park. The Department for Transport recommends that at least 6% of the spaces for shopping be Blue Badge bays (plus one more BB bay for each disabled employee). Obviously my local supermarket falls far, far short of that 6%. I couldn't use the underground car park if I wanted to because there is no lift down to it. I can only shop in my nearest supermarket if one of the measly 7 bays is empty. And they rarely are. The store has such a half-arsed attitude to patrolling the bays; at any given time there are on average 3 or 4 bays occupied by cars not displaying badges and the remaining 3 or 4 bays are occupied by Blue Badge holders, whether the badge is being used legitimately or fraudulently. Which means that I usually drive into the car park, discover I can't park and take my custom to the Morrison's a little bit further away. I've tried queueing for a bay but this usually results in me being subjected to harassment because being only 31 people assume I can't actually be disabled until they see me in my wheelchair or limping.

If Sainsbury's put in the effort to clamp down on people parking in those pitiful 7 bays either without a Blue Badge or using a Blue Badge that was issued to someone not present then they'd get more custom from local disabled people. I know of other disabled people in Camden who don't bother with the store at all, they just go straight to supermarkets with adequate parking.

All Blue Badges have a photo of its owner on the back. The following are allowed to check Blue Badges to see if the person the badge is issued to is present:

• police officers
• traffic wardens
• local authority parking attendants
• civil enforcement officers

If you're asked to show your badge and refuse you can be subjected to a fine. I've been the holder of a badge (blue since 2000, orange before that) for 26 years and I've never, not even once, been asked to present it for inspection to prove that I'm the rightful owner. As I've said before, it's pretty obvious that I'm disabled when I get out of the car and either get in my wheelchair or limp away. But as I've also said already, you can't see my impairment whilst I'm still seated in the car. I recall one occasion when I parked on a single yellow line right in front of a traffic warden. His face lit up and he held his little computer thingum ready to issue a ticket. I put my Blue Badge and clock on the dashboard and he looked disappointed and walked away. He had a perfect opportunity to check that my badge was being used by the person it's issued to, but didn't bother.

The day before BoJo wrote his piece The Sunday Telegraph wrote that around half the Blue Badges currently in use are being used fraudulently. The fab Full Fact investigated but could neither confirm or deny the claim. Based on my own experience of Blue Badge theft the stat isn't surprising at all. After all, at one point there were 3 Blue Badges floating around with my name on; the one in my possession and the 2 that had been stolen from my car.

Johnson twisted the wording in his article to make the 50% stat mean something very different. What he said was:

According to yesterday’s Sunday Telegraph, ministers think that as many as half of all blue badges could be going to people who don’t need them.

It's the use of "going to" rather than "being used by" which utterly changes the meaning. Those two stolen badges of mine were being used fraudulently, but they weren't issued to someone that didn't need one, they were issued to me. This trick of language reiterates my earlier point that BoJo is trying to stir up tensions amongst disabled people to keep us divided.

The government keeps on with this rhetoric about how benefit reform is to "weed out the scroungers" whilst "protecting the most vulnerable". It's utter bull of course, they're planning to cut the DLA bill by 20% despite the fact that only 0.5% of claims are fraudulent. But there are many, many, disabled people who think that they'll be OK because they're genuinely disabled (despite there being a 1 in 5 chance they'll lose their DLA) and they constantly moan about the (almost non-existent) fakers. On Facebook and so on I've seen many people with my own impairment moaning about people that don't look disabled getting benefits because that's the kind of bile this government is encouraging. And with BoJo's ideologically driven article he's pushing that Tory agenda even further in encouraging wheelchair users to be (even more) hateful of ambulant disabled people, while paying almost no attention to the real problem: That of theft and fraudulent use. A problem that could be dramatically reduced if only traffic wardens used their powers to check badges were being rightfully used.

Johnson actually had the gall to say:

We are a warm-hearted species, and we like to confer benefits on as many people as possible,

Oh the irony...