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.

29 October 2013

Medical Complaints

This story was in the news yesterday about how a "complaints revolution" is needed in the NHS. But a few years ago I came across a much bigger problem with making complaints about negligent medical care. The problem wasn't with the NHS; the problem was with our stupid legal system. I'd have come across the same problem in trying to get justice if a negligent private doctor had been responsible for my mother's death.

I've never written online before about what actually happened to my mum. I've mentioned that she had died without going into the details of what happened. I've told friends off-the-record in real life, but I've never published it on the internet before because that publication could have affected any legal proceedings. But now justice is well and truly off the table, it's something I can write about.

How she died

Black and white photo of my mum in her wheelchair outside what was our home at the time.

The story of how my mum died actually begins 10 years and one month before her death. My mum's youngest sister was married to a bloke from mainland Europe and in November 1998 my aunt and her husband flew home from visiting his family. As soon as they landed in this country my aunt started complaining of chest pain. My aunt was overweight, a lifelong smoker and had just flown. Despite these risk factors, when she saw her GP the next day; he diagnosed her with indigestion and gave her Gaviscon.

Five days later she was feeling really ill so went to get an early night. Her husband made her a cup of cocoa and took it up to her. By the time the cocoa was made and he'd carried it up the stairs; she was dead. My 85-year-old nan (who my aunt and uncle lived with) ran barefoot across the street to fetch a neighbour nurse. Said neighbour performed CPR on my aunt until the emergency services showed up, but she was gone. Unsurprisingly she'd had a massive, and instantly fatal, heart attack.

If my aunt's GP had sent her straight to A&E when she presented with chest pains 5 days earlier, it's possible she'd still be alive 15 years later. Of course she just as easily might not be; but it's possible that she would.

The reason the story of my mum's sister's death is relevant is because 10 years later, my mum died the same way thanks to the same response from a GP. Not the same GP, it's important to note: It seems the response is a standard one wherever you see a doctor.

colour picture of my mum sitting on a wall wearing a flowing colourful dress.

My mum died in December 2008. Her chest pains began around two years earlier, so that would've been 2006. Just as her sister did 8 years before, my mum went to see her GP about her chest pain and was diagnosed with indigestion. Unlike her sister, my mum was prescribed omeprazole - rather than Gaviscon - for the indigestion.

My aunt died within 5 days of the indigestion diagnosis. My mum lasted for 2 years and repeatedly visited her GP during that time. She struggled to push her wheelchair, became unable to lay down flat, and clutched her chest at the slightest movement. You have to remember that this was a woman with osteogenesis imperfecta; she had a fucking high pain tolerance. When she was in hospital as a child with broken limbs, she would still be changing nappies of babies on the children's ward and showing some love that cold-hearted nurses wouldn't. (Parents weren't allowed to visit: Hospital rules.) My mum was not someone who was easily stopped by pain, so for her to stop and clutch her chest while transferring from wheelchair to armchair; she must have been in agony.

For two years she kept going back to her GP, and her GP did nothing. No referral to a cardiologist, no cardiac tests, nothing.

On the 4th of December 2008, she went to go to bed; but couldn't get out of her armchair and into her wheelchair. She couldn't breathe. She admitted defeat and called 999. Once in hospital she was assigned a consultant cardiologist who told her, in no uncertain terms, that "you should have been referred to me two years ago."

Apparently, according to her test results, her heart attack had been massive and she was lucky to be alive. It didn't last. On December 13th at around 10pm her heart gave up and stopped completely.

A few months after mum died, the British Heart Foundation ran an ad campaign on buses with wording to the effect of "chest pain is your body's way of telling you to call 999." Such a shame they don't teach that in medical school. My mum and her sister might still be around if GPs were smart enough to know that chest pains indicate a need to rule out heart problems. Yes, you can say that my mum and her sister should've skipped the GP middle-man and gone straight to A&E themselves. But these were women with no academic qualifications who placed their faith in their GPs, expecting them to be educated enough to treat them.

The legal snag

My mum in her twenties holding up a pint of beer.

While mum was in hospital we had a conversation about the need for mum to sue her GP to make sure he didn't treat anyone else so badly. I remember pointing out that she was lucky to be alive and that he could have killed her. Turns out he did kill her: By the time she was hospitalised, she was beyond saving.

Shortly after her death I contacted a lawyer. Obviously I wanted justice for my mum; but what I wanted most was to protect her GP's other patients; to make sure he couldn't kill anyone else with his indifference.

I was told that I couldn't sue because I'm not legally considered my mother's closest living relative: My father is. I once lived inside my mum for 9 months. That's really fucking close. But no; the only person who could sue my mum's GP was my dad.

My dad will not do anything that involves moving from in front of the TV. Anything. For three years I kept begging him to be reasonable, to think about protecting other patients. To try to make him see that if that GP kills anyone else; their blood is on his hands because he could have stopped it.

He wouldn't. He cares more about the patients on Doctors than the patients registered at my mother's doctor's surgery.

You can only instigate a case within 3 years, less one day, of realising the doctor was wrong. So the deadline for initiating legal action was Dec 3rd 2011. That's long gone, so like I said at the start: Any potential justice for my mum is long off the table.

How fucked up does a legal system have to be when a dead woman's daughter is considered too distant a relative to be able to sue the doctor whose negligence resulted in the woman's death? Yes, the NHS complaints procedure needs work and the news yesterday was full of examples as to why. It can be scary complaining, especially if you're complaining about doctors whom your life depends on. But beneath the NHS complaints framework we need a legal system that protects NHS and private patients alike. Sometimes issues are so severe (like fatal negligence) that a surgery complaint form isn't enough and you need to take legal action. We need to fix NHS complaint systems, but we need to fix our ludicrous legal system too.

26 September 2013

The #BigBangTheory Season 6: My thoughts

Seeing as season 6 finished in the UK about a month ago, and season 7 starts in the US tonight, I can't imagine there's anyone that gives a crap about The Big Bang Theory that hasn't seen the sixth series in its entirety. But just in case; I'll put the rest of this post beneath a jump.

16 August 2013

♫...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?

30 July 2013

"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.

09 April 2013

The Difference Between Relief and Joy #thatcher

Lots of people are celebrating the death of Margaret Thatcher which is pretty crass. I've lost my mum and it doesn't matter how grown-up and independent you are when you lose your mum; it hurts. I can't imagine how it feels to be Thatcher's children knowing that people are throwing street parties in celebration of your loss.

But I can understand why there are some people feeling very relieved right now.

Someone ruined my childhood. I'm nearly 34, haven't seen her for 23 years, but I still have nightmares about her. Co-incidentally the last time I saw her was the same year Thatcher left office.

For 23 years she hasn't been able to hurt me. But she still holds power over me.

When the Panorama about Winterbourne View aired my Twitter timeline filled with people saying "I'm going to go to sleep tonight hearing those screams." You know whose screams I heard that night? My own. Once again I was 6 years old and crying and begging for the torment to stop.

Like I say: I haven't seen or heard from her in 23 years. I have no idea if she's alive or not. Once or twice I've tried Googling her the morning after the nightmare before; but haven't been able to find that out.

If I were to stumble across an obituary for her I wouldn't celebrate the fact that she's dead. I wouldn't celebrate the grief of her family: Her family did nothing to hurt me. But I would feel a rush of relief and safety, even though she hasn't been in a position to cause me harm since 1990. I obviously can't be sure of this; but I strongly suspect that the frequency of nightmares about her will lessen dramatically.

I didn't really understand the harm Thatcher caused during her years in office: She became PM 2 weeks before I was born, and I was 11 when she left office. On both sides of my family I come from very working class backgrounds. I knew that Thatcher was bad because I heard it so many times from the people around me; but I didn't understand why.

Now I'm old enough to understand the number of lives Thatcher ruined; and how she ruined them. I understand how her policies continue to ruin lives: Just look at the number of homeless people because she sold council housing and failed to build new properties to replace them. I understand the anger of the survivors of Hillsborough and the anger of the relatives of the deceased.

Thatcher has been out of office since October 1990: Three months after I last saw the woman who made the 80s hell for me. Since 1990 Thatcher hasn't had the power to continue to ruin those peoples' lives.

But I can also understand the psychological harm she caused to her victims. And I can understand why her victims might feel relieved that the woman who caused them so much pain can no longer do so. Though out of office, 87, extremely frail and in a position to hurt nobody; the psychological bond of the damage she caused hung over her victims' heads.

Her victims will never be entirely free from the pain she caused them, but I can understand why that pain has lessened slightly this week. A few of the strings holding that history over her victims heads have been broken.

Everyone who suffered because of her actions has a right to feel relief this week. But no-one has the right to celebrate that a family is in mourning. To do so makes you no better than her when she praised people responsible for mass killings. And given that she caused so much pain; do you really want to stoop to her level? Really?

Don't Hate, Donate is a brilliant idea. Instead of sinking to Thatcher's level and celebrating death; why not donate to a cause that supports her victims?

04 April 2013

♫...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.

06 November 2012

♫...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.

23 October 2012

Should He Stay or Should He Go Now?

Sometimes a news story is so big people use the expression "you'd have to be living under a rock" in order to have not heard about it. In the case of the Jimmy Savile story that has exploded this month; I'm pretty sure that even the woodlouse living under that large pebble in my garden has a basic understanding of the case.

The BBC is holding two inquiries into what happened. Obviously the first is in to how such a sex offender was able to carry out his crimes right under the BBC's noses. The second is into why 11 months ago Newsnight canned an investigation into these crimes.

Peter Rippon, who was responsible for cutting the Newsnight exposé, has stepped aside. Over the last 36 hours I've read several things along the lines of:

Rippon shouldn't fall on his sword. All he did was can a Newsnight investigation after Savile's death. He had nothing to do with the perpetration of the crimes.

The thing is: He unwittingly might have done.

When Savile's victims started coming forward the police undertook an assessment of Savile's crimes. They couldn't launch a criminal investigation because they couldn't prosecute someone that'd been dead almost a year.

But almost 3 weeks after the allegation floodgates opened the police turned the assessment into an actual criminal investigation because the allegations implicated Savile's fellow paedophiles that are still alive.

We don't know who the co-accused are. The police aren't releasing that information because it would jeopardise their inquiries. All we know is that they're still alive and so potentially still raping children. If Newsnight had aired the film 11 months ago then these allegations would've come to light nearly a year earlier and his co-accused could've been caught that much sooner, potentially protecting any of their victims this past year.

Rippon's disgusting attitude towards women and belief that paedophilia isn't "the worst kind of sexual offence" are quite evidence enough that he shouldn't be responsible for a news show. Because news does happen to women and children too; you know. But the fact that he could have blown open this news story a year earlier and in the process potentially protected victims of paedophiles proves that there's really no place for someone like him in investigative journalism.

30 July 2012

♫...What's in your head, in your head?...♫

Well... my jaw pain, allegedly.

Getting told that your physical condition is psychosomatic is disturbingly common. In the past it's happened to me but only over a period of a couple of months, and it wasn't a serious condition anyway.

In 2003 or 04 (I remember it was when I lived in Golders Green, which was from June '03 to June '04) I finally told my GP that I had trouble making out what people were saying, especially if there was any background noise. It had been a problem for about a decade but I'd not bothered to see anyone about it. As hearing loss caused by a fractured stapes is common in osteogenesis imperfecta my GP sent me to the Royal National Throat, Nose and Ear Hospital to get my hearing looked out.

When my hearing test came back fine, the registrar told me that I was mad and purely imagining that I couldn't hear. He referred me to hearing therapy to "teach [me] how to hear". The hearing therapist was horrified at how I'd been spoken to. She also gave me an actual diagnosis which explained all my hearing issues: Auditory Processing Disorder. Yes, it's a brain condition rather than an ear condition; but there's nothing imagined or "mad" about it. It's essentially 'sound dyslexia'.

I've had another case where I was told that I didn't have the medical condition I do actually have, but instead of being told I was imagining it; I was told I had a different medical condition. For years I was told that I had nothing wrong with my sinuses, that I was having migraines instead. After a couple of years of Idiot Registrar not being able to spot inflamed sinuses when they literally sneezed on him; he finally deigned to look at a CT scan of them. "Oh, there is something wrong with your sinuses after all" was his comment upon re-entering the room.

Rather ironically I now do have migraines caused by my sinus problems going untreated for so long. The lack of treatment damaged the nerves in my sinuses and you have nerves that run through your nose and into your brain. The damage to these nerves triggers migraines in me. So thanks for that little gift, Idiot Registrar.

My jaw became an issue about 3 years ago. The muscles started spasming and it subluxed pretty regularly. I would often wish someone would stand on the right hand side of my face to keep my jaw where it was supposed to be. One day I remember @BendyGirl tweeting that she'd just stood on a friend's pelvis to reduce it; so I responded along the lines of "great! Now get down to London and stand on my face to keep my jaw in its socket."

Over the years my jaw problems have progressed. I reached a crunch point in the first week of February this year: My jaw hurt so much that I spent the whole week so bombed on morphine that I didn't even notice when I re-fractured the metatarsal I'd originally fractured 6 weeks earlier. And my jaw was still more painful than I could bear.

So I went to see my GP and he referred me to maxillofacial. The referral was rejected and my GP was told to send me to the Facial Pain Clinic at the Eastman. He did.

So I went to the Eastman on Wednesday expecting an examination of my jaw, some x-rays and general usual hospital appointmentness.

My appointment was at 9:30, which was about when I arrived at the building. The clinic I was going to was in an area marked "2" so logically I went to the second floor. Area 2 isn't on the second floor. Then there was the orderly jamming the lift door open with a laundry cart with me inside. I mean I was inside the lift, not the laundry cart. By the time I reached clinic reception I was 18 minutes late. They refused to see me for "being half an hour late". Which is odd because I hadn't realised that we now had 40 hour days.1

I go to a lot of hospital appointments. Wednesday was my second appt in the space of 6 days. I think this is my first appointment ever that was running less than half an hour behind schedule which was why I was quite laid back about not arriving at the hospital bang on the appointment time. Smegging typical that the first time I encounter a hospital running on time reception is staffed by punctuality obsessives. But then I guess they would be the people who'd get a clinic on schedule.

They wanted me to go home and come back in September. Of course, I now know that it wouldn't have made a damn bit of difference, but at the time I was reduced to begging.

The doctor agreed to see me but I was then subjected to more tutting and eye-rolling from reception because I hadn't filled in my pre-appointment questionnaire, having banked on doing that in the waiting room.

I will say one thing for the clinic reception/waiting area: It's got aircon. Presumably because they also handle a lot of private patients. I guess if there's going to be a silver lining to the recent NHS Act it might be that with 49% of beds going to private patients we start to see hospitals that aren't all ovens.

The appointment itself lasted an hour which is unusual. You'd think that would be an example of excellent medical care, wouldn't you? Except it was 58 minutes of asking me about depression and 2 minutes of examining my face. Which really tells you what the clinic is all about.

Some gems from the consultation included his incredulity that the pain clinic have never sent me for counselling. Like talking about my feelings is going to stop my sinuses from hurting or cure my osteogenesis. I consider myself genuinely blessed to go to one of the few pain clinics where they don't go in for the bullcrap touchy feely stuff and just prescribe painkillers.

When talking about my sinuses he asked the question "and did they actually find anything wrong with them?" He was obviously working on the assumption that I don't have any real physical conditions and I just have conversion disorder. I'm surprised he didn't question my OI and claim I'm making my scleras blue by being miserable.

I should've foreseen what my diagnosis was going to be when I explained that because of my hypermobile hands I do things like unscrew bottle lids with my teeth and he was totally unperturbed. People who care about my oral bone health usually go batcrap over that; even though my lack of useful hands make it non-optional.

He clearly didn't believe me when I explained about the subluxing jaw. He kept saying "but you've never had your mouth get stuck open and been unable to close it..." He seemed incapable of understanding that hypermobile joints dislocate easily, but they go back in pretty easily too. During the incredibly brief physical examination he exclaimed that the distance I can open my mouth is "very good." I'd bet my cat's whiskers that before my jaw became problematic I could open it even further. Despite his acknowledgement of the existence of hypermobility, he wouldn't accept that I had it in my jaw and clearly didn't believe my jaw had ever come out of its socket.

Notably he didn't ask me if I'm on bisphosphonates; a common treatment for osteogenesis. An important question given that it could cause osteonecrosis of the jaw. (I'm not, so that's not my problem.)

Unsurprisingly my diagnosis is that my jaw pain is psychosomatic. The cure? Group therapy. Really. They don't just have psychologists on hand at the facial pain clinic though; they even have shrinks ready to dole out psychiatric meds rather than accepting that sometimes people have something wrong with their jaw.

Without any medical training myself I presume my knackered joint is causing my muscles to spasm in the same way that my weak hand joints cause muscle spasms when using a pen. Yes there is a stress element to it: Tense muscles get worse when you're more tightly wound generally; just ask anyone with cerebral palsy. But does that mean CP is psychosomatic? Of course not.

But what I am sure isn't psychosomatic is the crunching noise my jaw makes when I yawn or chew. It sounds and feels just like the crunching noise my right ankle often makes: A joint that's had its worn-outness confirmed by MRI.

So now I know why maxillofacial rejected the referral: They obviously saw citalopram and amytriptiline on my drugs list and assumed there's nothing physically wrong with me; I'm just nuts. Despite the bone disease...

What can I do now? Well there's not much really I can do except go along to therapy and talk about my fucking feelings even though the flapping up and down will make my jaw worse, if anything.

Other suggestions for treatment include "a relaxing activity with a physical element like yoga or gardening." Logic fell over and died at this point: I already garden and my jaw fucking hurts.

I'm also supposed to get some exercise. You know; like the miles I push and the swimming I do. I may have been priced out of going to the gym but I don't spend every moment of the day gawping open-mouthed at the telly. That noise you can hear? It's logic turning in its grave.

I love the NHS. As I've explained before a really important thing is giving feedback because that's how you help something you love function better. So hear this NHS:

You could save a fuckton of money if you stopped denying people medical help for years while they get worse claiming that the patient is "just depressed". It's the worsening which is where you lose the money. An assumption of conversion disorder should only be reached once you've ruled out all logical physical possibilities. It should never be a first stop before you've even carried out an examination. I know at least 10 people, probably more if I asked around a bit, who've at some point been diagnosed with conversion. One does actually have CD that fits, the rest were eventually given a physical diagnosis.

When I got home I was emotionally shattered from a shit appointment and physically shattered from driving back from visiting my dad in Colchester hospital the night before. I immediately crawled into bed. Thank goodness for cats: Betty decided to take my mind off things by lifting her tail up, reversing in and then sitting down on the pillow with her anus about 3cms from my nose. Finally something to laugh at on a miserable morning.


1 Thanks to Robin for the maths help with that one. @Uppo1963, @latentexistence, @PatParslow, and @indigojo_uk all answered my question also; but Robin got there first.