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:

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.

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.

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.

(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.

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 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.

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.

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.

Betty Egan: 2002ish - 24/8/21

Death

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.

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.

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.

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.

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.

♫...I'm not sure all these people understand. It's not like years ago, The fear of getting caught, Of recklessness and water...♫

There has been much talk over the last few months about the irony of Atos doing the computing for next year’s Paralympics. People thought things were getting even odder when Atos founder Bernard Bourigeaud joined the International Paralympic Committee (IPC) board.

Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.

As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.

All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.

The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.

The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.

People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; an SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.

After years of training I made it into the GB team for the Europeans’ in Badajoz in '97. I went out to Spain as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!

Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.

They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.

You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.

Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.

The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).

My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.

For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.

(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)

Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.

Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).

Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.

Edit August 2023: I said in paragrph 6 of this post "in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. And that was true at the time I wrote it in 2011. However, in 2018 the IPC changed some of the the classification system's regulations, and one of the changes meant that all of the double above elbow amputees were moved from the S6 class down one into the S5 class. So you will no longer find anyone with no arms in an S6 race.

I would say "I'm happy to make this clarification", except it's been fucking carnage for the lifelong S5s; and now all medal podia for S5 races are completely dominated by the ex-S6 double above elbow amputees. I watched the heats for the men's S5 50m backstroke at the World Championships in Manchester yesterday morning, and I did not notice even one single man with any other impairment in either heat; because the ex-S6's now completely dominate the classification, it looked like no-one with CP, or a spinal cord injury, etc, decided it was worth bothering entering. In the women's heats there were a couple of swimmers with impairments like CP, who have arms, but it was all the double above elbow amputees who completely dominated. I missed the final of both races because I was out running an errand, but I tuned into the live stream just in time to catch the medal ceremonies for both S5 backstroke races. Obviously all the men's medal winners were double above elbow amputees, because it appears no-one with any other impairment even bothered to enter since the takeover of the classification by those moved down en masse from S6. While in the women's race - where there had been a couple of entrants with arms, even though they must've known they didn't have a chance against the ex-S6s - it was also the case that there was not one single arm to be found on the medal podium.

Having experienced what it feels like to be on the receiving end of unjust decisions by the IPC, I can completely understand why all the other swimmers in the S5 classification (some who may be in their 30s who've been in the S5 class since they started competing in their teens) with conditions like CP, spinal injuries, even different types of multiple amputations, would - 5 years after dozens of ex-S6s took over the S5 class - have reached the point where they've decided "I might as well retire, I just can't race fairly against the ex-S6s, they have too much of an advantage over me."

Big Brother is over for another year. Hurrah! It is now safe to tune in to channel 4 and E4 once again.

This series there were not just one, but 2 disabled housemates. Prior to this series they've had only one disabled contestant, Pete Bennett. He won.

Both Darnell and Mikey survived the entire series (I make it sound like that episode of Doctor Who, don't I?) and made it in to the final.

I also understand that the first American BB was won by an amputee.

TV companies have always been hesitant about putting disabled people on TV. Surely if nothing else, BB proves that viewers *like* having disabled people on their screens and *want* to have disabled people on their screens.

After all, if viewers didn't want to see the disabled contestants, they'd have been voted off ages ago.

The motivations for wanting to see disabled people on screen is almost certainly because they can get away with staring at someone different, which they get embarrassed about doing in real life. Or they end up having an accident. I just love it when people get so engrossed at staring at me, the lady in the wheelchair, crossing the road that they forget to look right and left themselves before stepping into traffic. But Big Brother means they can gawp at us from the safety of their sofa, without the risk of getting hit by a car.

But, motivation is irrelevant. The public have voted that they want to see disabled people on TV. Isn't it time the TV companies paid attention?

Of course, TV companies aren't paying attention. I understand from a friend that not one American TV station is covering the Paralympics. NBC even branded themselves "The Olympic Broadcaster" (or something like that), but they're not showing the Paralympics. Even though at the end of day 2, the US is at the top of the medal table. You would think disabled and non-disabled Americans alike would want to take pride in their success, especially seeing as so far their Paralympians are doing better than their Olympians did.

Here in the UK we're doing rather better. We've got six hours coverage a day via the digital "red button" option on our tellys. Then every evening there's a highlights show on one of the main channels. Those of you in countries where you're unable to watch the games on your TV might be interested to know that the torrent site UKNova is uploading the BBC's nightly highlights programme. Don't bother to ask me for an invite code though. The site doesn't do them. You just have to keep hitting the "signup" page until an account "vacancy" becomes available.

The Beeb's Paralympic website is also mostly excellent (some of the journalism is rather sloppy; for instance apparently Darren Kenny "suffers from" cerebral palsy. Even though he's just won Paralympic gold). But the video files are only available to those connecting to the net in the UK.

When Big Brother started in 2000 I never, ever imagined I'd say that there were lessons to be learned from it. Even more unbelievable is that the lesson that can be learned is that viewers want to see disabled people on TV.

NBC, the so-called "Olympic Broadcaster" could certainly learn a lot from it.