24 August 2023

My beloved Betty

[Content note: Pet death]

Back in November 2005, I wrote a very brief post about my newly adopted, 3 year old cat Betty. She came home to her forever home on 26/11/05, and we spent 16 years together; until she died of kidney failure on 24/8/21.

Betty was by my side through the worst moments of my life. When my mum died in December 2008, Betty was who I cuddled when I got back to my parents' house from the hospital that night. She realised that sometimes people go away and don't come back; so for the next month she cried whenever she couldn't see me, which meant I had a lot of bowel movements to the soundtrack of a cat wailing outside the bathroom door. In April 2016, when I came home from the hospital on the day my dad died, she demanded to be carried around for the rest of the day, despite the fact that she usually hated being carried. And, of course, when the worst pandemic for a century struck; she was my companion while I shielded from a virus that could've easily killed me before vaccines were released.

A few months back, a journalist friend asked about experiences of pet bereavement during the pandemic. In the final article, Betty and I only got a one sentence mention, so I thought I'd publish here - on the second anniversary of her death - the full email I sent to s.e. about Betty and losing her.

it was obviously harder than it would've been to lose her in non-pandemic times.

I was wearing an FFP2 mask when she was euthanised in my arms, but I'm not sure how much protection it offered considering I had to keep taking it off to blow my nose because it was filling up with snot. This is my final photo of her about 15 minutes before she died:

In the foreground is a black cat with white whiskers who appears to be gazing off to the right of the camera. She has a big red bandage on her right front paw. Behind her is the middle aged, brunette, bespectacled, white woman whose lap the cat is sat on. The woman's left arm is wrapped around the cat for support. The woman is wearing a white, duckbill-style FFP3 mask, and her face is red from crying so much. The backround is the interior of an animal hospital.

That night my friend came over for dinner, and although she brought some microwave ready meals, I was really craving curry, so we ordered in; I told her if she phoned the restaurant to see if there were mushrooms in the vegetable balti, I'd pay. The restaurant said they could do one without mushrooms if I added a note when ordering; but because of grief brain I immediately forgot and she had to call back and ask them to leave the mushrooms out of my balti.

It wasn't just the first time I ate indoors with other people since February 2020, it's still the only time I've eaten indoors with other people since February 2020; apart from that I've only eaten at tables outside cafes/restaurants/in pub beer gardens. The mental health benefits of having company that evening outweighed the risk that K might be infectious; and to be on the safe side I had all the windows and the back door open for ventilation.

In a way, Betty's kidneys picked a good day to give up: Betty died on the same day the 2020/2021 Paralympics started. She was still alive when the opening ceremony happened at lunchtime UK time, but she was dead by the time the sport started at 1am that night. It was really comforting to have live sport to watch all night overnight for the first 10 days without her. She used to sleep on my chest - she lost so much weight during her final illness that she really felt the cold even though it was summer - so she used me for warmth. At night when I missed the feeling of her weight on my chest I had the live sport on the telly for company.

A selfie of a middle aged, brunette, bespectacled, white woman, wearing a pink T-shirt and laying down on her back in bed; using a bunched up black duvet as a pillow. A black cat wearing a pink collar is laying on her front on the woman's chest - between the woman's boobs - with the top of her head resting on the woman's chin. The woman's eyes are open just a crack and looking at the camera, and she has a neutral facial expression.

8.5 days after she died I was watching the sport and eating a vegan bacon butty for breakfast. I saw something on my lap and presumed it was a seed or crumb from my sarnie, so I picked it up cos I didn't want crumbs in my bed; when I realised it was one of her broken claws. No idea how it suddenly appeared on my lap more than a week after she died. About a month later one of her whiskers appeared from nowhere too.

I knew she was dying for 7 months, so I'd actually favourited some items of memorial jewellery on Etsy that I really liked before she died. The weekend after she died was a Bank Holiday weekend, and the maker of this necklace had a holiday sale for the weekend; so I ordered the necklace before I'd even got Betty's ashes back from the vet.

A silver chained necklace with a large pendant in its box. The pendant is heart-shaped clear acrylic. In the background of the pendant is a rainbow with vertical stripes. In the foreground on the left are some grey speckles, in the middle is a dried forget-me-not (a small blue flower), and on the right is a lock of black fur.
My Betty necklace. The grey speckles on the left are a tiny sample of her ashes, while the black lines on the right are a lock of her fur.

The vet clipped a couple of locks of Betty's fur, but the lock in this necklace I actually put aside before Bet died. Betty went blind a couple of weeks before she died (her kidney disease caused high blood pressure, and her blood pressure detached her retinas) so I bought her some stairs to get on the bed because she was really anxious about making the jump: And a few days before she died I found these few hairs on the top step of the stairs; it looks like they were loose and came off when she scratched an itch. I put them aside in a little Ziploc bag I got some earrings in.

I love this necklace as a way to keep Betty close to my heart.

Although I have 11 piercings, I didn't have any tattoos until the first anniversary of her death. A friend of mine has a tattoo of his late dog's paw print over his heart and I loved the idea; and with his blessing I copied him and got Betty's paw print - that was taken by the pet crematorium before she was cremated - over my heart on the first anniversary of her death. I couldn't think of a better way to mark the anniversary, so I asked Twitter for recommendations of wheelchair accessible tattoo studios in northish London, because I think all the ones in Camden are either up or down a flight of stairs. A stranger who saw my tweet recommended a place in east central London, so I phoned them and asked about their access, and they said they'd recently had the whole GB Paralympic wheelchair fencing team in.

It was such a weird experience, I'm really squeamish about needles and my blood pressure often plummets during blood tests; I always have to ask the phlebotomist to fully recline the blood test chair to stop the blood completely draining away from my head. The tattooist wanted to do the tattoo with me sitting in my wheelchair and I was like "no, I really need to lie down." My blood pressure tried to plummet during the tattoo, but the pain kept my BP up; so I just ended up feeling woozy and sweating profusely. It would've felt less awful if I wasn't wearing an FFP2 mask.

A selfie taken by a brunette, bespectacled, middle aged white woman wearing a blue FFP2 mask, laying on her back on a tattooist's bed. She's topless apart from nipple covers made out of kitchen towel that are taped in place. She has a tattoo over her heart of a cat's paw print, and the name 'Betty' below the paw print. The tattoo is black, and the skin around the tattoo is red where it's literally just been tattooed.

(The tattooist insisted I wear nipple covers made out of tissue to protect my modesty.)

It hurt so much. The colouring in wasn't too bad, apart from a few times when he pressed down so hard it felt like he was trying to tattoo my sternum, but the outline felt like he was carving out a paw print-shaped area of flesh with a Stanley knife. The little gaps, the imperfections, are from the actual paw print. The tattooist asked me if I wanted them coloured in so it was solid black, but I wanted it to be an accurate reflection of her print.

A selfie taken by a brunette, bespectacled, middle aged white woman wearing a pink v-neck T-shirt. She's wearing a necklace with a large pendant; the pendant is heart-shaped clear acrylic, in the background of the pendant is a rainbow with vertical stripes, and in the foreground on the left are some grey speckles, in the middle is a dried forget-me-not (a small blue flower), and on the right is a lock of black fur. She has a black tattoo in the middle of her chest, over her heart, of a cat's paw print, and the name 'Betty' beneath.

I hope it's a very long time from now considering I just adopted him; but I reckon there's room to get Biscuit's paw print below Betty's but still over my heart when he eventually goes. (Though he is 8, so I'm aware I'm not going to get 16 years with him like I had with Betty. But Betty died age 19, so I hope I'll have Biscuit for at least a decade; with being an indoor cat because of his sight - and the fact that he's so nervous that he runs under the sofa every time I open the door - at least that hopefully eliminates the risk of him being run over before his time, which is the cause of death for too many cats.)

Although saying it was harder than in non-pandemic times; I'm not sure what I'd have done differently if there'd been no covid. It's not like I'm blessed with lots of friends and could've thrown a massive wake for people who knew and loved her. I don't have family I could've invited over because they're all dead. Though, of course, it would've been better to not be wearing a mask during her final injection, and it would've been better to not be wearing a mask during the tattoo. She died a month after the lifting of mask mandates in England, so I didn't have to wear a mask during either her death or during my tattoo from a legal perspective; but I'm at high risk from covid, I'm still semi-shielding, so I had to wear a good mask for safety reasons.

She almost died twice during her terminal illness; from dehydration in April 2021, and from an infection in June. In April the first vet we saw refused to prescribe Betty subcutaneous fluids "because [I] don't have anyone else to do it." Since administering subcut fluids isn't a 2 person job, the implication was that she was going to let my cat die needlessly prematurely of a manageable symptom of kidney disease because I'm disabled and she didn't trust a cripple with needles. I asked for a second opinion with a different vet, and reminded them that it's against the law to treat us less favourably because I have a protected characteristic under the Equality Act. The second vet prescribed Betty subcut fluids and taught me how to administer them.

When she had the infection in June she came really close. The vet on the Saturday said she thought it was probably the end, but gave her a long-lasting antibiotic injection on the off chance it was an infection. On the Sunday morning she was really sick, and I spoke to the vet on the phone to get her prescribed an antiemetic injection to make her Sunday more comfortable before a final injection on Monday. Except throughout the course of Sunday she improved as the antibiotics got to work and by the early hours of Monday morning she was using me as a climbing frame, bouncing around so enthusiastically you'd never know she was so close to death 12 hours earlier. That weekend I was begging on social media for people I know IRL to be with me, because I was so scared and facing losing my best friend all alone, and no-one cared. On the Sunday before she turned around I cried so hard and for so long my chest muscles hurt from ragged breathing. I needed some company and didn't have anyone. This was more than a month after legal restrictions on mixing indoors with people not in your household had been lifted. So that's what I mean by I don't think things would've been different if she'd died in non-pandemic times.

A close up selfie taken by a brunette, bespectacled, middle aged white woman with a black cat with white whiskers standing on her left shoulder like a parrot. They're both looking at the camera; and the woman looks absolutely exhausted.
A selfie of us taken in the early hours of 28/6/21, after the antibiotics had kicked in, when Betty was feeling better and was using me as a climbing frame. I'd had hardly any sleep all weekend which is why I look so shattered.

Although when she actually died, I was almost relieved that she'd had those two close calls earlier in her illness: It had given me the chance to psychologically prepare for her death. I genuinely believe her death day would've been harder if I hadn't had those two chances to really get used to the prospect of her dying. When she almost died in April I had a panic attack and was in an absolute state of terror. When she almost died in June I was sad beyond belief, and scared, but not in the same state of terror I had been in April. When the time actually came in August, of course I cried a lot, but also I felt ready to cope in a way I hadn't felt before when I faced losing her.

I hope some of this rambling is useful to you. Happy to answer any specific questions.

As mentioned in the email, I now have another cat called Biscuit.

In the foreground is a ginger cat in a loaf position with his head turned to look over his right shoulder to look at the camera. Behind him is a brunette, bespectacled, middle aged white woman, wearing a black T-shirt, leaning forward to kiss him on top of his head. They're both looking at the camera, and the cat's left eye is slightly cloudy.

I waited a year after Betty died before contacting Holly's Merry Moggies to enquire about adopting a new cat. I told her all about Betty and that I was an experienced cat owner. I told her that I was looking for an indoor cat because I have anxiety and I worry about cats getting run over, and that I was happy to adopt a disabled cat who needed to stay inside for safety; and I told her that Betty went blind so I have both experience with blind cats, and I have the access equipment a blind cat would need like stairs to get on the bed, and bells to put in strategic places for audio navigation. Holly thought about it for a while before matchmaking me with Biscuit: An anxious, visually impaired, ginger boy who desperately wanted to be an only cat; because he was intimidated by all the young, energetic cats at her rescue.

I'd spent 13.5 months catless before going and picking Biscuit up from Nottingham on October 4th 2022. The reason I contacted a cat rescue so far away rather than going to somewhere local was partly because the big rescues insist you let cats outside, and I wanted an indoor cat, and partly because of my negative experience trying to adopt from a big rescue in June 2005. Although on that occasion it worked out right in the end; if that adoption hadn't fallen through, my (now passed) friend Sonia wouldn't have contacted me to ask if I was still looking for a cat, because her cat Betty desperately wanted to be an only pet and was getting into all sorts of scrapes because she didn't want to come inside the house with five other cats and a big St Bernard. (Pepsi the St Bernard was lovely, but that didn't matter to the cynophobic Betty.)

It's lovely having feline companionship again, but I still miss Betty every day; she was my best friend for 16 years, through all the terrible things that happened to me in those 16 years, she was always there with all the affection she had to give, and always there to make me laugh with all her silliness.

A selfie taken by a brunette, bespectacled, thirtysomething white woman, wearing a grey T-shirt and standing in a blue kitchen. She has a black cat with white whiskers standing on her left shoulder like a parrot. The cat rubs her cheek on the woman's face and then sniffs her mouth and nose; the woman pulls a kissy face in response.

Betty died at our local vet. Her kidneys had reached the point where she was completely unable to stay hydrated despite the subcutaneous fluids. Her liver was also going, and her blood test results indicated that she was also losing blood somewhere; likely in her digestive tract. I'd fought for her for seven months, but she'd finally started to suffer and it was time. She died sitting on my lap, abdomen to abdomen, with her chin and hands resting on my left shoulder, and my arms wrapped around her: She died wrapped in love. With her hands resting on my shoulder, the vet had to sit behind me to access the cannula in her right wrist to administer the injection. After, the vet asked me if I wanted some time with her body, to which I responded through tears "no, she feels horrible like this." (Once her muscle tone had gone it was like cuddling a cat-shaped bag of jelly.) The vet took her off my lap, laid her on a chair, and wrapped her in a blanket. As I was leaving I put my hand on her and said "I'm so sorry." To which the vet said "she lived much longer than most cats with her conditions because of the care you gave her." Which I know is true, as I said in the email above, she would've died of dehydration in the April if I hadn't fought for her to be prescribed subcut fluids; but I still wish I could've done more for her.

I loved her when she was young and playful and did parkour off the furniture every day. I loved her when she was old, calmer, and just wanted to either sunbathe or snuggle. I loved everything about her; I'm really sqeamish about needles, but I learned to give a cat subcutaneous injections for her. I'd have done anything to keep her healthy and happy for longer.

A selfie taken by a brunette thirtysomething white woman, laying on her left side in bed, cuddling a black cat with white whiskers. At the start of the gif the cat has her head turned to the right to look at the camera, and she turns her head to look forwards. As the cat turns her head, the woman smiles slightly. They look very cosy together.

Betty Egan: 2002ish - 24/8/21

10 December 2015

Sound and Fury signifying... A fucking great wanker.

When I was a teenager, swimming was a massive part of my life. And through it all, I was keeping a massive secret.

I loved doing really long distance training sessions. Partly because distance freestyle was what I was best at, but mostly because it gave me time - slogging up and down the pool - almost alone with my thoughts. I say "almost alone" because, obviously, there were dozens of people all around me. But you only get to interact with them once every 400 metres or so. So you're alone with your thoughts despite being surrounded by people.

How would I tell people I was gay? Should I even tell people I was gay? What would happen if I did tell people? Would people be really uncomfortable about me in the changing rooms?

I didn't know any openly gay swimmers. At all. Not in my swimming team, not anywhere.

There was an openly gay teacher in the area who was very well known among the whole swimming community. And I heard the things people said about her behind her back.

She had me sussed out before I'd told a soul on this earth. She was my course tutor when I qualified as a swimming teacher and one day we were watching a video of a male Olympian doing technically flawless breaststroke. The 4 other women on my course were going "oh he's so hot." And I said "eh, he's not my type." She totally shot me that "yeah, I know" look.

Coming out is hard. But coming out in sport is even harder.

Although this was the 90s and there was less LGBT visibility back then, I had a pretty good idea that most of my other friends from outside sport would be totally cool.

I was way more worried about telling people from swimming.

One day my coach said to me "I think you're a bit of a closet hippie."

I just laughed because I so wanted to say "that's not the only thing I'm in the closet about."

But I didn't say it, obviously.

Almost 20 years later there are a few openly gay athletes, including Olympians and Paralympians, but surprisingly few compared to other arenas of life. So young aspiring athletes are still probably ploughing up and down swimming pools or running round tracks wondering "what's going to happen if I tell people?"

Which brings me onto Tyson Fury. A man who looks and sounds like he went "wait a minute: I can actually make a living out of punching people in the face? Awesome!"

Yes, he's currently the world champion at punching people in the face. Which must take a lot of practice at punching people in the face.

Being world champion at anything takes hard work and skill, whether your personal beliefs are harmful or not. It's a shame that being good at a thing also gives you a platform from which to vomit your homophobic and misogynistic views, but apparently it does.

And I'm not going to argue that he shouldn't be allowed to compete in the ring because of the things he says out of the ring; however dispiriting his presence in the sport may be to young LGBT boxers fighting with themselves over whether or not to come out.

But the BBC's Sports Personality of the Year - as the name suggests - isn't just about being a talented athlete. It's about being a sporting personality. And his personality is a cruel, toxic, one. Now matter how talented an athlete he is.

The BBC have refused to remove him from the shortlist of contenders (though they did suspend a gay man who criticised him). But here's the thing: The award isn't pre-determined; it's open for public vote.

The British public can tell everyone that "we don't support personalities this hateful," by voting for anyone but him. Of course, there are 11 other nominees and if all anti-Fury votes are evenly distributed among them; he might still win. So dare I suggest that we all back Jess Ennis-Hill; the subject of some of his misogynistic bile?

The way to show young LGBT people - especially young LGBT athletes - that it's OK to be who you are, and no-one agrees with Fury is to vote against him. So please do. And just maybe a few young LGBT sportspeople coming to terms with who they are will feel a little more embraced knowing Fury got shat on by a whole country of voters.

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.