27 December 2014


Until last night I hadn't been in an ambulance since I was 8 years old and I shattered my ankle in school.

I'm pretty adept at dealing with injuries myself. I usually strap up my own fractures, my dislocations usually spontaneously reduce (the thing about joints that dislocate easily is that they pop back in easily too). I'm generally used to pain and injuries without seeking medical help.

But last night I had no choice.

My father was eating dinner and he aspirated a sausage. I slapped him on the back and hurt my shoulder. He coughed up the sausage all on his own while I was talking to the 999 operator. I said "oh, he's coughed up a piece of meat the size of a finger. But I still need that ambulance for my shoulder."

The paramedics were lovely. Well, at first they couldn't give a fuck while I was standing in front of them saying "I've got osteogenesis imperfecta and I think I've broken my shoulder." It eventually transpired that the 999 operator hadn't updated them, even though I'd told her quite clearly what had happened. So they arrived looking for an "81 year old choking victim." (I'd also told the 999 operator clearly that he's 80.) So given that they were looking for someone who couldn't breathe, my shoulder didn't matter at all. But once they ascertained that my father was breathing and I was now the patient; they were lovely and offered me perfect medical care.

The loveliness ended once I got to the hospital.

Well, not the second I arrived at the hospital. For a while I remained in the company of the paramedics because there were no hospital staff around. They hooked me up with more entonox because the one in the van crapped out. Even the paramedic admitted that it wasn't supposed to be making that noise. A friend of mine broke her toe recently and posted a gas & air selfie on Facebook. I decided I might as well join in for something to do while waiting for hospital staff to appear.

Me wearing a purple T-shirt and a sling supporting my left arm. My hair is really frizzy from the rain and I'm not wearing my glasses. Behind me is a white wall, above me is a white ceiling, to my left is a white door. I am sucking on a blue gas and air nozzle. It is the most unflattering photo of me ever taken because I look like I have the biggest double chin in the history of the world.

Eventually a nurse did show up. She was mean. She didn't actually use any unacceptable language, but from her facial expression and tone of voice you could tell that she thought I was the scum of the earth. She loathed me before I'd even said a word. At first I figured "well, it's Boxing Day. I'd be in a bad mood if I had to work too."

Except she was perfectly convivial to the doctors, the porter, the female paramedic. She gave the male paramedic a flirty wink and a grin. The unsuppressed contempt was for me and me only. Before I'd even said a word.

Obviously, during the handover, the paramedic mentioned that I'd had a dose of oramorph in the ambulance. The fact that I have multiple medical conditions that require morphine should not make a nurse hate a patient. If you're a nurse who doesn't like people who take prescription medications, you're in the wrong job. The drugs were clearly mine, the label explicitly stated that they were prescribed to me, I wasn't illegally abusing drugs. But you know what? Even if I had no painful medical conditions and I was a junkie who had no physical need for strong painkillers: I would still deserve to be treated with politeness by medical staff. Rudeness wouldn't make my shoulder magically better.

She can't even claim "I thought she was just a drug seeker" as a defence for her behaviour seeing as how I'd brought my own fucking drugs with me.

But I suspect she'd have hated me anyway. The painkillers I take were just fuel on her bitter little fire.

Her and the doctor who'd come along both begrudgingly agreed that they should probably take an x-ray to be on the safe side. It was quite clear that their assumption was that I had no injuries whatsoever, and they were just humouring me before kicking me out. I guess they were thinking "we'd better give her a zap of radiation so she can't write a complaint that we didn't even bother to x-ray her." Rather than the professional "lets order this essential medical test and carefully scrutinise the results, ordering more tests if it doesn't give us a clear answer as to the nature of her injury."

I feel I need to make clear at this point: I haven't named the hospital publicly, and I will not be doing so until the complaint has been processed. If you happen to know the name of the hospital I went to from my "friends only" Facebook post, please keep it quiet until the complaint has been followed through. I trusted you to share that information with you. Please respect that trust by not making the information public.

So I went for an x-ray. Like the paramedics, the radiologist was lovely. Well, one of them was lovely, conversational and warm. The other one didn't really say much to me at all, but at least she didn't express pure contempt like the nurse, or an assumption that there was nothing wrong with me, like the doctor did.

They took x-rays from 2 angles. If you've got a clearly displaced break, it's usually pretty obvious from most angles. If you've got a small fracture that doesn't go right through, you have to x-ray from exactly the correct angle in order to be able to see it.

The last time I went to A&E was because I genuinely didn't know if I'd fractured my rib or not. They took one x-ray and declared my rib to be fine. The next day I found out that there definitely was a fracture there when I bent down while gardening and that little fracture went right through and became a proper break. I didn't only feel it snap, I heard it snap too. I packed up my gardening gear, came inside, took some painkillers, watched The Great British Bake Off, then cooked myself some dinner. There was no point going back to hospital. I'd only gone the day before because I wanted an answer. Once the little fracture had turned into a clear break, I had my answer; no need to go back. They don't do anything for ribs unless it punctures your lung.

Once I crush fractured a couple of vertebrae. At the time the radiologist declared that there was nothing wrong. A decade later my x-rays were looked at by an expert in osteogenesis and he immediately said "you've done something here..."

"I knew it!" I replied.

I could go on, I have loads more examples. But the point I'm trying to make is that doctors often miss fractures on OI bones because our bones really aren't that opaque on x-rays. These experiences aren't exclusive to me; I don't think I know a single person with OI who hasn't had fractures missed that have ultimately turned out to be very real.

Once when I was a pre-schooler I didn't have just a little fracture, I had a proper displaced break go unnoticed by a doctor who just wasn't doing his job. My mum took me back to A&E again the next day because I still wouldn't move my arm: I was treated by a doctor who could be bothered to actually look at an x-ray, and was diagnosed.

The doctor I encountered last night took a quick glance at my x-ray, declared "no fractures. You're lucky. It's just a soft tissue injury. Goodbye."

I can't move my fucking arm at all, but I'm lucky? Even if it transpires that it is "just a soft tissue injury," that doesn't mean it isn't serious. Nasty soft tissue injuries can be more painful than fractures and take longer to heal than fractures. If they heal at all. Soft tissue injuries can require surgery. Soft tissue injuries do not show up on x-rays.

There's a common belief among doctors that there's only one type of injury that people with OI can sustain, and that's fractures. I've even met "experts" in OI who've fallen into that trap. The reality is that OI most famously affects bones. But it also affects tendons, ligaments, blood vessels, skin... In fact it affects every tissue in the human body. While many doctors seem to believe that OI is an immunity against all other injuries; the reality is that OI makes us more vulnerable to tearing tendons, etc.

Oh how I wish I was at home in London right now. The first time I went to my local A&E, the doctor I met was meticulous. The radiologist said he couldn't see anything wrong with my x-ray. But when the doctor reviewed it she noticed a random speck of bone floating around in my foot. It was about a millimetre long and about the width of a hair. But she studied and studied my x-ray until she spotted it. She couldn't explain it, that took an orthopod. But she noticed it and realised it might be relevant.

It turned out that I'd torn a tendon out of the bone. The tendon that's responsible for rotating your foot inwards like the movement involved in moving your foot from the accelerator to the brake while driving. That tiny speck of bone was a little chip of bone that had been pulled off when the tendon came out.

I wish I'd encountered a doctor with her diligence last night.

Usually when I tell people about that injury, they start wincing. But, actually, while painful, I could still walk on it. Well, the small amount I can walk anyway. In fact I could still move it for the first 2 months after the pain started until my foot eventually decided "nope, not moving any more." It was my inability to move it that made me finally give in and go to the hospital, not pain. Sure, it was painful, but within the realms of my pain tolerance. It wasn't pain preventing my foot from moving, it just wouldn't budge.

This shoulder? So not within my pain tolerance. And the reason I can't move it is because of pain. I can break a rib one evening and then lift my wheelchair in and out of the boot of my car the following day. For me to be unable to move something at all because of pain... Well, that hasn't happened since I snapped my humerus aged 9.

After I'd been kicked out of hospital, I again encountered human decency. When I got in the cab I failed at my first attempt to do up my seatbelt. My left hand is dominant and I was trying to do up a seatbelt on my left hand side with my right, non-dominant hand. (Because if I sat in the back seat with a right hand side fastener, that would have meant the belt going over my left shoulder.) He offered to help me, but I managed it on the second try.

I involuntarily gasped with every bump in the road we went over. He sounded like he felt so guilty for inflicting pain on me. Unlike in the ambulance, I didn't have entonox to suck on (well, until it gave up towards the end of the ambulance ride, anyway). I wound up feeling sorry for him because he knew he was causing me pain, felt guilty about it, but couldn't help it.

And now there's my poor cat. She keeps trying to affectionately head bump my arm. I can't explain to her "please express affection towards any part of my body except that arm." So I have to just keep pushing her away and she looks ever so upset. She could give @mysadcat a run for his money.

As for my dad and his sausage? That's twice I've visited him in a row where he's inhaled food. If me refusing to come visit until he sees a doctor to discuss his aspiration issues is what it takes to make him see a doctor about his aspiration issues; then that's what I have to do before he kills himself on a KitKat. If I don't threaten such measures, he'll just carry on like this until his death certificate reads "cause of death: Steak and kidney pie."

But for now I'm dealing with the worst injury I've had in more than 25 years, and have had no medical treatment for it whatsoever.

08 December 2014


I've lost 2 friends in the past couple of weeks. First there was Tracey, and then Stella this weekend.

I knew Stella long before she was famous. Before she was a comedian. Before she was a writer. When she was someone who hung about on disability messageboards like the (now closed) BBC Ouch boards. In fact, years before she started doing stand up she said to me "I plan to come to England one day and seeing you perform is one of the things I want to do."

Though I knew her for a decade online, I've actually only met her twice; and they were both while she was here covering the Paralympics 2 years ago for the Aussie press. First at a protest outside Atos's HQ, then at a rugby match. She never saw me do stand up, I had to quit due to illness in 2007. Five years before she came over here.

Picture of 4 people. The back row is a non-disabled woman and a non-disabled man perched on a railing. The front row is 2 women in wheelchairs. In the background wheelchair rugby players are on the court warming up.
Felicity Ward, Tiernan Douieb, Stella and me

One of the first things I noticed about Stella when I met her was that she sits on the front edge of her wheelchair seat, and sticks everything like her phone in the space behind her - between her butt and her wheelchair's backrest. I noticed because my mum did exactly the same thing: Her handbag, usually a tape measure, and all other kinds of junk were stuffed between mum's back, and the backrest of her chair. Even me when I was small enough to fit. On Saturday it'll be the 6th anniversary of my mum's death.

Tracey's death was sad, but not surprising. When I first met her 20 years ago she'd already lost a younger sister to the same condition she had. I knew she wasn't going to be around forever. Stella's death was an utter shock. I read about it on Twitter on my phone and my hands started shaking. She seemed so vibrant and healthy. Just a couple of weeks ago she wrote a letter to her future self.

When people with OI die; everyone breaks out the snowflakes. It's become a motif. Stella hated it. When a mutual Facebook friend of ours died in October; Stella posted the following status update:

This weekend a young woman with OI that I only knew from Facebook died. I was really sad to hear it. I didn't know her well at all, but she seemed like an interesting person and someone who was highly regarded in the OI and LGBT community.

Within hours, my facebook feed was flooded with pictures of snowflakes. And poems about snowflakes. And analogies about snowflakes melting as a symbol of death. Apparently at some point a parent of a kid with OI decided that their kid was like a snowflake. Presumably because having Osteogenesis Imperfecta make you small, fragile, delicate, unique, blah, blah, blah. Whatever. Call your own child whatever nickname floats your boat. They may grow up loving it, or they may grow up rolling their eyes. Who knows. But this snowflake business seems to have caught on in the OI community and it makes me pretty uncomfortable.

I understand why it may resonate with some people, and having a symbol like that can be comforting when you lose someone from a community you feel a part of. It does remind us of our own mortality. And I know there's no real harm in just letting people have their thing.

But in case I get hit by a bus tomorrow, I want to make something clear.

I am not a snowflake. I am not a sweet, infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.

The second I read about her death I remembered she'd written that and had to dig out that status from 2 months ago and share it on Twitter and Facebook before everyone started changing their userpics to snowflakes.

And people have respected her wishes. I haven't seen a single snowflake.

But BuzzFeed are dicks.

In 2012, Stella wrote this:

It doesn't matter how we got like this. Really. Are you asking because you want to know or because you need to?

So I can just imagine how she'd feel about an article Brad Esposito wrote. I'm not going to link to it, I don't want to reward their clickbait with clicks. But here are snippets in the context of a review.

In large font it says '8 Things You Might Not Know About Osteogenesis Imperfecta.' Then in smaller font it says 'Following the tragic death of Stella Young, here are eight things that many of us don’t know about the genetic disorder.'

the text '1. Osteogenesis Imperfecta is a genetic disorder, causing bones to break easily.' followed by 2 x-rays of the legs of a person with type III OI.

These are almost certainly not Stella's x-ray's. They'll just be random ones found from a google image search. But for fuck's sake; you can make out the genitalia of the people involved even if they are anonymous.

The text '5. There is no cure.' followed by full body x-rays of a 38 year old woman with type I, a 63 year old woman with type I, a 40 year old man with type IV, a 35 year old woman with type IV, a 27 year old woman with type III, and a 40 year old man with type III.

I'm disgusted that someone would use a person's death for an excuse to break out the x-rays to give the public a good gawp at what our freaky skeletons look like. As Stella had discussed; the public want to know, they don't need to know. A disabled person's medical history, such as x-ray's of what someone will have vaguely looked like under the skin, are not in the public interest. The name of her condition, sure. Her cause of death if that comes to light, yes. But anatomical images of her insides? No.

Stella was fortunate that she'd made her wishes about snowflakes clear before she died so wasn't subjected to them. I know I'm not going to be memorialised in the same way: I'm not famous, I'm not popular, I'm just benefit scrounging scum. I won't be remembered by former Prime Ministers, news outlets won't write articles about me. I'll be lucky if more than 5 people show up to my funeral and 3 people write blog posts about me.

But I feel I need to make the following quite clear:

  • No snowflakes either. I'm not small and delicate. I weigh 75kg: You would not want a snowflake my size landing on you. I'd crush you and the imprint left in the snow after I'd squished you would not look like the traditional snow angel.
  • No bullshit clickbait fetishising my deformed bones. My innards are my innards. Porn is about seeing the normally unseeable, like getting a good view up someone's cunt. When I was doing my MA in Cult TV I read CSI described as "the porn of death" because with the autopsies, and "the CSI shot" where you get to see a bullet smashing it's way through someone's chest, that's about seeing the normally unseeable too. This kind of article is basically impairment porn: Where you get a have a bloody good look at all someone's unusual bits, both inside and out.
  • Do not use the word "RIP" in reference to me. Seriously. If you care that I'm gone you can either type the three whole words "rest in peace" or just not bother.
  • Can someone please play Raise Your Glass by P!nk at my funeral. I may be wrong, but it's in all the right ways.

If someone does write that kind of impairment gawp fodder about me, please direct them to this post. These next 5 words are for them:

Fuck you, you creepy arsehole.

In the same article as "It doesn't matter how we got like this. Really. Are you asking because you want to know or because you need to?" She carried on that paragraph with:

If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know. If we've actually met and had a conversation beyond "Do you want honey with your chai?" then perhaps it gets a little more relevant. It might come up in conversation, and when it does, we'll be happy to tell you. It's just not a very good opening line.

TV and articles like that one by BuzzFeed just feed into the public notion that a disabled person's medical history is public property that absolute strangers feel they have a right to demand from you. As well as the examples Stella listed, I've been asked by strangers on the bus if I have phantom limb pain, despite the fact that I've had nothing amputated. I once had a woman on the High Street ask what happened to me... and then carry on walking without waiting to hear my answer (which would have been expletives, obviously). She just asked and carried on walking like "did you have an accident?" is some kind of cripple's alternative to the nod and "alright?" that you generally offer when you acknowledge someone's presence in the street.

I was sad when I woke up this morning. But now I'm angry. Angry that Buzzfeed would exploit the death of a popular comedian and activist to get people to click and stare at what her skeleton looked roughly like. Despite it being the kind of thing she publicly railed against.

12 September 2014

The International Paralympic Committee are a disgrace

Oscar Pistorius has been found guilty of the culpable homicide [manslaughter] of his girlfriend Reeva Steenkamp. The International Paralympic Committee's response?

"... if he wishes to resume his athletics career then we wouldn’t step in his way – we would allow him to compete again in the future.”

Source The Guardian

That's right. Kill your girlfriend and once your trial's over you'll get a fuzzy welcome back hug. Notice how Craig Spence from the IPC didn't even have the decency to use Reeva Steenkamp's name; the woman whose life was stolen by Pistorius? She doesn't matter because according to some other man at the IPC; Pistorius was a “fundamental ambassador” for London 2012.

There's this assumption that oppressed groups would be sympathetic to other oppressed groups. Given that disabled people like Francecca Hardwick, Olivia, Ben & Max Clarence, Alex Spourdalakis, and Caitlin Wentzel are routinely killed for being disabled, you'd think a body representing disabled people would have a bit of sympathy for another group of people routinely killed for existing: Women. In South Africa in 2009 a woman was killed by her partner or former partner every 8 hours. While in Britain a woman is killed by a man every 2.36 days.

But, no. I would say "most oppressed groups don't care about the oppressed groups that they don't belong to;" except the International Paralympic Committee works with disabled women too! Though it's noteworthy that the IPC is chaired by a man, and both spokespeople praising Pistorius today are men.

Most people would think of American Football as quite a brutal sport. Yet the governing body the NFL have banned Ray Rice indefinitely for knocking his partner out cold in a lift. Truly astonishing that they have more human decency than the IPC.

The most ridiculous thing is that the IPC routinely exclude disabled people from competition for having the wrong sort of impairment. If you've got any diagnosis other than:

* Cerebral palsy or a brain injury resulting in similar mobility impairment,
* Spina Bifida or other spinal cord damage,
* Missing limbs,
* Achondroplasia (many other forms of dwarfism like osteogenesis imperfecta are deemed unacceptable to the IPC),
* Visual impairment, or;
* One of the very few types of learning difficulty the IPC deems acceptable.

Then you will either be classified out of competition, or banned from competing entirely. If you have the wrong type of diagnosis; the IPC deem that a crime worthy of excluding you from sport. But if you take a woman's life you're perfectly welcome to compete.

Returning to Craig Spence's statement; he unbelievably said:

“Oscar’s done a great deal for the Paralympic movement. He’s been an inspiration to millions..."

Everything's inspiring when you're a cripple; from putting on your own underpants to taking someone's life. I'm sure he's inspired dozens more men to commit domestic violence now that they know they can shoot their partner repeatedly and get treated fairly lightly by a justice system geared for men.

For most of my adult life I've been deeply saddened that I was classified out of the Paralympics for the crime of having an impairment that the classifiers have taken a dislike to. But you know what? Today I'm fucking proud that the IPC aren't speaking for me when they say that he'd be welcomed back into the fold of the Paralympic movement.

15 July 2014

♫... Maybe I'm crazy. Maybe you're crazy. Maybe we're crazy...♫

I'm angry. I wasn't 20 minutes ago. I was exhausted. 3 days of migraine will do that to your energy levels.

But then I read this. When newspapers publish such offensive bollocks you can always show your utter distaste by using it as toilet paper. Can't really do that with online publications. I'd say "I don't want to get shit on my computer screen," except with that article open in a browser window: There's already shit on my screen.

If you can't be arsed to click the link, here's a one sentence summary: "I'd only date a disabled person if they were trying really, really, hard to not be disabled."

I guess it gives him a slight moral edge over the 70% of the population who'd never shag a cripple under any circumstances, but it's a fucking thin line.

He gets bonus wankstain points for "since she's doing the right things to beat her illness, then over time, she eventually would."

Some people "do the right things" and never beat their illness. Someone really should give him basic lessons in how health works. I take a fistful of meds twice a day. I don't drink, or smoke, or eat meat, or take (non-prescription) drugs. I'm a fucking angel. (OK, I swear a lot. That may not be very angelic, but it is good for you.) All my medical conditions should have vanished years ago according to Mr Baker. Instead I can't even go for the most basic hospital tests without getting slapped with yet another diagnosis.

Secondly: An ill person has no obligation to do what Baker thinks are "the right things". I've been told I should do all sorts of bollocks. Things "helpful" people have suggested include quitting prescription medication in favour of eating cherries and sticking my feet in mud to "ground" myself. Even the medical profession sometimes come out with a load of shit. I have a bone disease. My right jaw joint is crumbling. I once had a hospital appointment in which they didn't even bother to take an x-ray; they simply told me there's was nothing wrong with my jaw, it was just depression, and talking therapies would make my jaw better. Obviously I told them where to shove their group counselling cos if anything the flapping up and down would make my jaw hurt more. Eventually someone did take an x-ray of my jaw and I was vindicated.

Baker said he wouldn't date someone who wasn't "doing the right things," and that it's not "stigma" but "self-preservation". I get that some people with mental health problems could be triggered by being around other people with mental health problems. That's life. It's no different to how people with cystic fibrosis shouldn't be around other people with cystic fibrosis because of the risk of cross-infection.

But when your objection to dating someone with a mental health problem isn't about them triggering your symptoms; but about whether or not they're doing what you deem to be "the right thing": It's not about self-preservation, it is stigma. It is discrimination. It is a morality judgement.

This whole thing about having to be A Good Disabled to be accepted is bullshit. You have to smile politely at the person that just grabbed you and dislocated your shoulder. You have to be polite when a stranger starts praying for you and not tell them in graphic detail where to shove their bible. And now, apparently, you have to read self-help books if you want to be dateable.

Ultimately it all comes down to what I call "the Glen Hoddle mentality". He's really the figurehead of the notion that illness and impairment are a punishment for sinning. In this case "if you're a Good Disabled that tries hard, you'll be rewarded by your condition going away! (And as a bonus I might go out with you.) But if you're a Bad Disabled that doesn't try their best, you'll never get better. (And as an extra loss, I won't go out with you.)" If your conditions don't vanish: You are bad and you deserve everything you get.

The decision of whether or not you want to go on a date with someone should ultimately all come down to one question: "Do you fancy them? Y/N." None of this "oh, they're disabled," or "they're just not doing the right things." Although I imagine that even if I were straight I'd have a tough time getting turned on by a moralising wanker who thinks my ill health is my own fault.

27 March 2014

♫... 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.

25 February 2014

♫...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.

23 January 2014

♫..."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.