16 October 2015

Being Alone

I know from past experience that there's no faster way to lose friends than to talk about your mental health; but I'm going to anyway. Because I just can't help but think how many of us would be less depressed or less afraid if our society was just... Better.

I mean there's the obvious: People who depend on help from the state are fucking terrified because social security is no longer secure.

But my anxiety/panic lately has been about way more than just money. And I just keep thinking "I wish I had someone to hold me and tell me everything will be alright." But I don't.

I don't necessarily mean a partner. It's perfectly possible for a platonic friend to hold you and make you feel safe.

I know the show was massively unrealistic in a number of ways; but I keep thinking of Friends. Let's use Phoebe as an example. If she'd had a weekend of panic attacks and needed someone to stay with her all night to make her feel safe; you know that one of the other 5 would have obliged. Because they were close friends.

I was incredibly lucky on Sunday when I was panicking that one of my neighbours was home so she sat and watched Downton Abbey with me for a little while. But a couple of days later my cat was ill again and I posted on Facebook asking, once again, if anyone was free and no-one replied. (Luckily after I got home from the vet I wasn't as anxious as I expected I would be when she first started pissing blood again.)

The reason I'm writing this isn't because I want pity. Or I want attention. Or anything about me really.

Surely I can't be alone in being alone.

There must be thousands of people - maybe hundreds of thousands of people - who are in my shoes: No partner, no children, no siblings, no mother, no friends they see regularly. People who got left out and left behind when their friends from the past all got careers, got married, started families. Or even people who have got careers, but see no-one outside of work.

And I'm writing this from the fairly privileged position of someone with an internet connection and quite a few social media contacts who've offered to be there for me via Skype. (Although today's been one of those days when I've felt like I'm Tweeting/Facebooking/blogging into a void and no-one's listening at all.)

How did people like me end up on the scrapheap of life? And how can we fix society so we aren't so alone?

How many people have to do what I did this week and see a doctor having a panic emergency; when we wouldn't have been in a state of panic if we only had people around us that made us feel safe? This time last week I was on the phone to The Samaritans just because I was terrified and didn't know who else to talk to.

Sure, maybe someone holding me and reassuring me wouldn't have made any difference and I'd still need medical help; mental illness isn't totally socially created. But our social structures matter in how we think and feel. Just like poor housing has a negative impact on your physical health; poor social networks have an impact on your mental health.

And I'm not talking about setting up some formal, professional, support group for those of us that society likes to avoid. Or some condescending befriending scheme based on pitying the poor lonely people. I mean real social change so people like me are seen as real human beings with value that are worth spending time with.

I know it's idealistic: But why can't we live in a world where a group as diverse as a waitress, a chef, a masseuse, a frequently unemployed actor, a data-something-or-other and a palaeontologist can all be besties?

You'll have to forgive me talking about TV a lot; but my TV and my cat are the only support networks that I physically encounter every day. I sometimes go weeks - even months - without seeing other humans in a friendship capacity. Yes I see humans in their professional capacity as doctors, doctors' receptionists, pharmacists, vets, staff in shops, etc. But there's that professional boundary between us.

I don't know where I'm going with this ramble. I just know I'm not alone in being alone. It's not just us benefit scroungers at the bottom of society: Throughout all walks of life some people are isolated by circumstance. Because our world is fucked up, and I wish it wasn't.

10 October 2015

Pain and fear, fear and pain. #WMHD2015 #WorldMentalHealthDay

Trigger warning: This post contains discussions of fear and anxiety, medical negligence, animal illness, accidental injuries, suicidal ideation and general panickyness.

29 May 2015

Just put the shovel down, Ted. #StellasChallenge

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

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

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

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

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

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

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

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

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

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

Have you encountered attitudes that you would like to change?

Yes. The attitudes of people like you.

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

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

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

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

What impact does this have on family life?

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

How does that make you feel?

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

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

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

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

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

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

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

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

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

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

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

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

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

The project is wrong. Everything about it is wrong.

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

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

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

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

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

01 May 2015

How many politicians does it take to throw 18% of the population under a bus? #BADD2015 #GE2015

This was written as part of Blogging Against Disablism Day 2015.

This time 18 years ago I was so ridiculously full of fucking hope.

Being born 13 days after Thatcher moved into Downing Street I'd only ever known Conservative rule. All I knew was a life of being broke and shat on by the political class.

But in the run up to the 1997 general election - with my naive teenage optimism - I was so excited at the prospect of Labour swooping in and making life better. And God I was pissed that I couldn't vote. Like I said, I was born 13 days after Thatcher came to power, which means that on May 1st 1997: I was 16 days too young to vote. But I had the front bedroom in our house and duly stuck a "Vote Labour" poster in my window.

Labour had done great things in the past: The NHS, the welfare state and council housing in the 40s. In the 70s they gave us Attendance Allowance and Mobility Allowance which, in 1992, the Tories merged into Disability Living Allowance. (The Tories like to claim they "created" DLA: It's a lie. They just took 2 existing allowances and rolled them into one unified benefit with one application form.) I wanted Labour to continue to make life better for people in similar shoes to my own.

I was a fucking fool.

They swiftly got rid of grants for living costs during university. Had I gone to university in September 1997 when I was 18 I'd have gotten a grant. But I didn't go to uni until 2000, and by that time they'd abolished the grants that they took for granted (ha!) during their own education. The Student Loans Company was a Thing.

Coming from a family with zero money they couldn't support me so I couldn't eschew loans and live off Mum and Dad. Coming from a family with zero money I was eligible for the maximum amount of student loan; which also meant maximum debt. Thanks for the financial ball and chain Tony.

Then, in 2008, Labour gave us the brutal Employment & Support Allowance to replace Incapacity Benefit for people too ill to work. Instead of developing a progressive social security system that improved the lives of the people Labour had historically helped in the past: They actually regressed the welfare state.

Sure, Labour weren't completely without their merits. They brought in Education Maintenance Allowance, they slightly beefed up the Disability Discrimination Act in 2005, and they introduced Civil Partnerships. But cancelling student grants, bringing in tuition fees, and torturing people who are too ill to work is hardly what you'd expect of a party that's supposed to represent the Labour movement.

Now we're in 2015 and there isn't a speck of hope or enthusiasm anywhere within me.

This entire election campaign is built on "who can be the most disablist?" Because shitting on disableds is fashionable and apparently a guaranteed vote winner. Latentexistence had a look at one of Cameron's remarks about life on benefits over at WtB while DavidG had a look at some of the party manifestos. Which saves me a bit of trouble, although David skipped Labour and Green (a bit like Hull City Council).

In Labour's 'disability manifesto' they say they want to "ensure disabled people have a voice at the heart of government." Listening to disabled people and hearing our voices is something they've talked about a lot. They're so busy talking about wanting to listen to us that they're not actually listening.

Disabled people have been saying that we want the Independent Living Fund saved, Labour will close it.

Disabled people have been saying that we want DLA restored with the lower rate care component and the walking distance for qualifying for the high rate mobility component set at 50 metres. Labour will keep PIP and their only related pledge is to fix the backlog.

Disabled people have been saying that they want the toxic Work Capability Assessment scrapped and a fair assessment of a person's fitness for work brought in. Labour are going to keep the WCA and just tinker around the edges a bit. The most hilariously insulting proposal is that they're going to give us information about how our condition affects our ability to work; like disabled people aren't already aware of what we are and are not capable of.

Yes, Labour are better than the other big party. They're going to axe the bedroom tax, "pause" (not halt) Universal Credit, and in their disability manifesto they say they're going to "review" the coalition's cut to Disabled Students' Allowance. But given the cuts they're not going to reverse, it's clear they're not standing up for us. They're just less cruel than the alternatives.

They're basically trying to straddle the disablism line. Hitting disabled people with enough cuts to try and appeal to some Tory/UKIP voters, while throwing us one or two bones to try and win our votes too.

Then there's the Greens. So much of what they say is so right. They're the only party that's pledged to save the ILF, and all sorts of other good stuff.

But if you think their pledge to legalise voluntary assisted suicide was frightening; one of their health policy pledges is enough to scare the shit out of anyone whose life sucks. Or could be considered to suck by medical professionals.

It's hard to tell you what number that health policy pledge is, because it keeps changing. It was HE347, but on their website currently it's HE524. Anyway, this is it:

Screengrab of some text that says 'HE524 The Green Party recognises that medical decisions taken towards the end of a person's life should never be undertaken lightly. We believe that when the quality of life is poor (e.g. due to severe dementia) life prolonging treatments such as influenza vaccines and antibiotics should not be given routinely without consideration of the whole situation including the wishes of the patient and relatives.'

The wishes of the patient and family should be taken "into consideration"? Fuck that shit. If someone with a "poor quality of life" has a treatable condition like a chest infection, and they want treatment, they should be entitled to treatment. Period. Doctors are pretty bad at judging the quality of life of disabled people. They'd probably judge the quality of life of a ventilator-dependent person as "poor", when actually that person might have a brilliant job and family life and generally be really bloody happy.

Anyone who wishes to refuse medical treatment has that option. If someone terminally ill wants to expedite their death by refusing treatment for something treatable; they already have that right. This policy basically comes down to giving doctors the right to refuse to treat anyone whose life they consider to be poor.

I'm left-wing. I should be a natural Labour or Green voter. Labour should be properly anti-austerity and true to their roots. The Greens shouldn't have fucked up proposals about wanting to withhold life saving care.

I haven't explored the Tory, UKIP or Lib Dem disablism. I was going to, but David beat me to it. Needless to say: I won't be voting for any of them.

All this hate has had me in a serious depression of late. People who follow me on social media might have noticed I've been around a lot less lately, but that's because I just can't face it. Every time I turn on my computer I'm just faced with the constant stream of stuff about the election and it's crushing my soul. Life really fucking sucks if you're disabled in the UK right now. This time next week we'll either have a Labour PM who's going to axe the bedroom tax, but won't do anything else to make life better. Or we'll be stuck with fuckface and his smug chums for another 5 years and things will be a hell of a lot worse.

The ideal outcome from this election would be a rainbow-left coalition. The SNP, Plaid Cymru and the Greens would force Labour to the left of their current position, and hopefully Labour and the SNP would veto any of the Greens' kookier ideas. But Labour have ruled out a deal with the SNP and the Greens have ruled out a deal with Labour. So the very best week can hope for is "getting rid of the bedroom tax and everything else staying as shit as it's on course to be anyway."

So I've been burying my head in the sand. Trying to avoid it all because I just can't deal with the fact that life isn't going to get better than this. The first thing I do when I get up in the morning is check the late-night TV schedule to plan what I'm going to watch while getting ready for bed. That's literally all I have to look forward to of a day: The day ending again. And inbetween times I've been watching a hell of a lot of Criminal Minds: Because fictional serial killers are less bleak and depressing that real-life politicians.

29 January 2015


Another friend of mine died today. That's three in three months.

This time it was the wonderful Lucy Glennon.

I can't remember the first time I met her online; you repeatedly cross the paths of other Tweeters, writers, activists, and friends of friends until you get to know that person. But I do remember the first time I met her in real life. It was at the Hardest Hit march in London.

The gathering point for the start of the march was on the Embankment. I was heading east to west to meet my friends Mandy and Lou, and I saw Lucy go past heading south to north about 75 yards in front of me. I recognised her immediately from photos I'd seen of her online. I yelled out "Lucy!" in my sort-of female Brian Blessed boomy voice that can be heard for about half a mile. Her and the 2 people she was with all heard me and stopped, despite all the background noise. We only chatted for a few seconds because I was looking for Mandy and Lou, and she was heading towards the others from debra. I think the next time I saw her was at another Hardest Hit event, this time a static rally outside City Hall. The static nature meant neither of us were dashing around finding other people so we could sit and chat.

Considering we only lived about half a mile apart, we really didn't see each other as much as we should have. When I first met her she was living in an inaccessible block of flats, but eventually rent rises and benefit cuts meant she was forced to turn to the local council to be rehoused into a council flat. This also meant she got allocated a wheelchair accessible flat. She moved to the big new development in Kings Cross, into one of the first blocks of flats to be opened.

Every time I moaned about my flat being not accessible enough she would tell me that I should ask the council to be rehoused because they were building more accessible properties in the development she lived in, and it'd be so cool if we were neighbours. And it would have been cool to have a really great friend in the block of flats next door, but it wasn't to be. As nice as it would be to live in a better flat, moving is so crushing both mentally and physically that I just couldn't face it.

Lucy would often post information about EB on Twitter and Facebook (not to mention photos of her hanging out with people like Sean Bean and Damien Lewis at EB fundraising events) so I knew that life expectancy for people with it isn't great. And every time I read such things I knew that Lucy had reached an age where it was a worry as to how much time we had left with her. So I'd try to immediately put it out of my mind because I didn't want to think about a world without Lucy in it.

I considered sending a text to Lucy's phone, figuring her possessions are now in the hands of her family, to send them my condolences. But concluded that would be weird so didn't do it. I've only met her dad once and not any other members of her family.

I shall miss her greatly. She was a wonderful woman with a fantastic sense of humour. Every time I hear any mention of Game of Thrones and shall think of her and her adoration of the show.

04 January 2015

Pics or it didn't happen

Today I coughed, and then I screamed in pain.

It's now 9 days since I wrecked my shoulder.

I did it on Boxing Day. On the 27th I managed to escape from the arse-end of nowhere and get back to London so I could go to my local A&E. It really wasn't much better.

I arrived, was seen by the triage nurse, and was sent to x-ray in only a few minutes. Well, the triage nurse pulled a doctor aside and said "she's crying in pain." I wasn't really. I was crying because:

A pie chart entitled 'why I was crying'. There is a dark blue slice taking up 5% titled 'pain'. Then there's an aqua-coloured slice accounting for 25% of the pie entitled 'sadness about being treated so badly the night before'. Then there's a purple slice accounting for the remaining 70% of the pie labelled 'fear of being treated so badly again'.

But I didn't bother to shout after her and correct her.

I initially stopped by the seats outside x-ray, and continued facing the direction I was facing anyway. But I became aware of the flow of air as people walked close to my shoulder and turned around so my good shoulder was facing outwards before someone knocked it.

I had 3 x-rays taken this time. I heard a voice bellow along the corridor "it isn't dislocated" and knew they were talking about me. (I never, for a second, thought it was dislocated.) I was then swiftly downgraded from A&E to the Urgent Treatment Centre.

I really wasn't sat there very long before I got called in by a doctor. I once again told the story of what happened, "no, I didn't fall over," blah, blah. You know all that from my last post. The doctor looked at my x-ray, came back and told me that he couldn't see any fractures. And proceeded to treat me like I had a small bruise. Unlike my dad's local A&E they were polite about it, but still didn't care. "Urgent treatment centre" is a bit of a misnomer if all they do is pull you aside for a "there's nothing wrong with you" talk.

Well, they gave me a prescription for some 30/500 co-codamol and offered me a sling.

I'd already explained to him that osteogenesis imperfecta most famously affects bones, but actually it affects every single tissue in the body containing type 1 collagen. Which is every tissue in the body. Tendons, ligaments, muscles, blood vessels, even skin. All affected. But as I said in my last post; doctors think if you've got OI and not broken a bone, there can't actually be anything wrong with you at all. Explained it to him, all of it.

He said that if I couldn't manage at home, they could admit me until I got some social care.

"If you admit me, will that get me an MRI and a diagnosis?"

"An MRI wouldn't show us any more detail than we can see on the x-ray."

"You can't see soft tissue on an x-ray."

Even when you waste your breath explaining that OI doesn't just affect bones (something they should have learned in medical school), they still don't listen.

"Well, no, we wouldn't. We'd literally just keep you here until you got some social care."

"Right, I'm going home then."

Every time break my toes I'd be eligible for medical care, but I don't bother wasting my time or their money because I can strap it up myself and it's not like they're particularly painful unless you try wearing shoes.

When I actually needed medical care and asked for it, I was treated like I had a bit of a cramp.

When I snapped a rib gardening I didn't need to call an ambulance. I packed up my gardening supplies, came inside, took painkillers, waited for them to work, then cooked my dinner. The next day I went shopping, which entailed lifting my wheelchair in and out of my car. Didn't need medical care, even though I'd have been eligible for it.

I haven't left my flat since I got home from the hospital that night because I can't drive my car or push my wheelchair. I can only prepare foods that can be made one-handed. But I'm not eligible for medical care because it doesn't show up on an x-ray.

When I fracture the little bones in my hands and feet (which I usually do a couple of times a year) I usually just say "fuck", tape it up, and carry on with what I was doing.

When I got home from the hospital on the 27th I tried moving my arm to put talc in my armpit and screamed so loud I woke my hard-of-hearing upstairs neighbour. But I'm "lucky" to have "just a soft tissue injury" according to medical "professionals".

I wish I'd got the memo where it was decided by the NHS that policy is "pics or it didn't happen." Which is really what's going on here. If it can't be seen on an x-ray, it's not real. Or at the very worst it's just a small bruise.

Even if you can't move your arm.
Even if you can't drive your car.
Even if you can't push your wheelchair.
Even if you can't wipe your arse with your dominant hand.
Even if you scream at the pain in your shoulder when you cough. When a broken rib didn't make you scream like that upon coughing.

Pics or it didn't happen.

I had really wanted to go and see Neville's Island during it's final week. An organisation that owed me an apology were going to buy me tickets too. Cracking cast: Adrian Edmondson, Neil Morrissey, Robert Webb and Miles Jupp.

Couldn't go. Obviously. Like I said; I haven't left the house since I came home from the hospital. I'll remind you that after breaking a rib I got myself to Westfield the next day. Went to FrightFest about 10 days later, and even managed to cram my broken rib into a bra for that outing.

I was really upset about not being able to go. But "luckily" there's nothing wrong with my shoulder right now.

While 2 A&E departments were collectively as helpful as a shit in a sock, I've had wonderful friends come to my rescue. I especially have to say thanks to Liz & Jo who:

* Arranged for someone to drive my car back to London from Hell.
* Came and rescued me from my local hospital (and gave me a bag of Christmas presents while doing it).
* And Jo went back to the hospital the following day during pharmacy opening hours to get the co-codamol that the "urgent treatment centre" prescribed.

I would literally still be crying in Clacton if it weren't for them.

I often go months without seeing anyone. But my friends have been great these last 9 days. Someone else came by to grate some cheese for me to make one-handed cooking a bit easier. (Lactofree don't sell pre-grated cheese.) Another friend is swinging by tomorrow to throw some rubbish out for me.

Now, if you'll excuse me. I'm going to go and have a bath. It takes me nearly 2 fucking hours to get dressed again afterwards.

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.

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.