♫...Come and take a swim with me...♫

During our recent spurt of summer, having spent 3 days splayed helplessly on the sofa, I decided I wanted to go for a swim in the open air to cool down a bit. Being probably the only lesbian in London to have never been for a swim in the ladies' pond on Hampstead Heath I decided that it would be the perfect place to cool off.

Obviously my next step was too Google "Kenwood ladies' pond disabled access". I got nothing. Zip. Zero. Nada. The best result was a list of all the pools in Camden: It had details of the pond on the same page as the details for Holborn Oasis and the Oasis blurb mentioned the access at that pool.

So I was still none the wiser about access at Kenwood. Next I did a Google image search for the pond to see if I could see what the access was like. I could see it had a deck with ladders into/out of the water. I can't do ladders. I could see I'd be able to get in OK - you've got gravity on your side - but I didn't really fancy my chances of getting out again; the freeboard was just too great.

Still being hot and still wanting to cool down I decided to just go there and have a look at what the access was: Maybe the freeboard wasn't as big as it looked in the pictures and I could manage? What if the ladder was at an angle so I could shuffle up the steps rather than an unmanageable vertical ladder?

After looking at this map I decided the most sensible place to park my car would be on Millfield Lane in Highgate.

Foolishly I assumed there would be maps of the heath on signs around the place that I could use to then find the way from the car to the pond. Yes, I know I've lived in north London for 9 years, but I don't know the heath like the back of my hand. I never go there. Manual wheelchairs and steep hills aren't a fun combination. But I do drive past the heath all the time so I've noticed the signs at all the entrances and assumed most of them had maps on them. I assumed wrong.

"Never mind," I thought. "Google 'Hampstead Heath map' on your phone."

No signal up there. I'd recommend people go up there with the map pre-loaded on their phone for reference. If you're on Orange anyway.

So I went wandering. Despite the abysmal gravel paths and hills so step I genuinely didn't know if I could make it to the top: I actually enjoyed myself. It was beautiful wandering around in all the sunshine.

I did eventually find the ladies' pond after 2 hours of meandering. At 8:15pm. It closed at 8:30. By the time I'd pushed the last few metres over horrific paving and gotten changed I would've literally had no more than 60 seconds in the water. But instead of just going back to my car I did go all the way to the pond to scope out access for future reference so it wasn't a completely wasted journey.

Having spent about an hour scrutinising photos to try and work out whether or not I could manage to get out of the water I couldn't believe the first thing I saw when I rounded the corner to see the deck: A hoist.

Making things physically accessible is massively important. But something can never be truly accessible unless you provide information about access. I'd wager most disabled women have never considered going for a dip there because there's no access information published on the web so they assumed there were no adjustments.

That's why I'm writing this post. Not because it's an interesting topic that I think will engage readers, nor because I'm seeking catharsis through writing out the thoughts in my head. This post is simply about information for the next woman who Googles "Kenwood ladies' pond disabled access".

Of course, access isn't just about getting into and out of the water. You have to start with getting to the pond. As you can see on this map, there's only one path you can take to get to the ladies' pond (14). Whether you're coming from the north or south you have to take the path I've painted pink:

The quality of the paving is truly abysmal:

They're just two rather arbitrary shots taken along the path. I kept getting people coming up behind me asking if I needed help. The terrain is so uneven that you couldn't accept help if you wanted to because within seconds your front wheels would catch on something sticking up, the person would continue pushing forwards, and you would get tipped out of your chair and onto the floor; chin first. You just have to make your own way very slowly and carefully.

Should you make it to the pond without ending up in an ambulance the access improves greatly. As you can see in the photo of the hoist: The area around the pond itself is concrete which is perfectly easy to push across. There's an accessible toilet, but unfortunately there's nothing to sit on in there to get changed. There is seating outside for getting changed, but I would imagine that for people needing to remove catheter bags and so on while getting changed that that then poses the problem that there's also no toilet by the seating!

I went back the day after my exploratory mission and this time actually got to swim. Being an unheated pond it's not suitable for people whose conditions are exacerbated by coldness. You can check the water temperature before you leave the house on the City of London website. It was a boiling hot day and people with osteogenesis imperfecta are prone to overheating. So for me getting into a pond that was 18°C was lovely.

There's no water shallow enough to stand in so don't do what I foolishly did and wait until you're in the water before putting your hat and goggles on. I ended up jumping back onto the hoist seat for a sec to free up my hands for putting them on.

Something else I didn't consider with not being an open water swimmer was goggle fog. In a pool modern goggles don't fog too badly. But in a pond there's a difference of about 20°C between the temperature of your face and the temperature of the water. Not having any anti-fog stuff meant that I had to stop every few strokes to de-mist because I couldn't see where I was going. Lesson learned for next time.

Goggle fog did give me the impression that it's not an overly accessible experience for people with visual impairments. Leaves and other pondy scum stuff loiters around the edge so you want to avoid that. You need to dodge buoys and at one point I had to give way to a couple of ducks. I can imagine that finding yourself fighting with an angry duck you didn't see coming isn't fun. Obviously being a pond rather than a pool there are no high contrast markings on the bottom to guide. Apparently they do sometimes have a lane rope out that you can swim along, but the banks of the pond don't look that easy for a tapper to stand on. And as I said before: You probably don't want to be getting too close to the edge unless you want to be picking pond weeds out of your ears.

Being a pond rather than a pool; the water is full of stuff. You find yourself swimming with ducks and fish, which means that also in there is duck poop and fish poop. While you're treading water to de-fog your goggles you'll get weedy things wrapped around your ankle. So it's quite remarkable that upon getting out of the water you feel cleaner than you do when you get out of a swimming pool. And it's not just a matter of perception: Cleansing my face and then looking at the cotton wool I noticed that less dirt came away than when cleansing my face after a swim in a chlorinated pool.

As someone that reacts badly to chlorine being able to swim in a body of water that isn't full of bleach was a real plus. I can swim in a pool once a week at most or the chlorine is just too much for my knackered sinuses. It was lovely to be able to swim without having to suffer streaming eyes and nose afterwards.

Given how not gross I felt I decided to wait until I got home before having a shower rather than having to fuss with figuring out a plan for how to manage potentially inaccessible showers. Apparently they have both indoor and outdoor showers but there's a step up to the indoor ones. I didn't find out whether or not they have a shower chair to sit on to use the outdoor showers: Obviously you can't sit in your wheelchair in the shower.

Will I go back again? Almost certainly. Obviously I'm not batshit enough to be swimming in there in January (it's open 365 days a year) but it was an enjoyable way to cool down on a hot day. I just hope the Corporation of London tarmac that bloody path before I get tipped out of my wheelchair, land on my chin and break my face.

♫...I'm going underground, (going underground)...♫ #BADD2012

Ken Livingstone’s approach to public transport in London changed my life.
__________________

I was eleven when I went to Disneyworld: A compulsory right-of-passage for every disabled child in the developed world. It was the first time I’d ever left the UK, so to say I was excited would be an understatement.

On our first morning there we took a cab from the hotel to the theme park. In the pickup/drop off zone, before entering the gates of Disneyworld itself, I saw the most incredible thing I’d ever seen in my life thus far: A wheelchair accessible bus.

I had never travelled by bus. I’d never seen such a thing as an accessible bus. It hadn’t even occurred to me that they might exist. The fact that mobility impaired people could use public transport in Orlando genuinely rocked my world. Of all the delights that Disney has to offer a child; nothing made me scream “Mum! Dad! Nan! Look at that!” quite as loudly as that bus. It was just a bus; such a mundane mode of transport to the majority of people. But to me it represented such freedom and inclusion that I couldn’t quite believe my eyes.

I lived in a miserable little Essex village at the time. About once a day you could get a bus to the nearest small town and I think you could occasionally get a bus to Cambridge. When I say “you could”; that obviously didn’t include me. The village did have a train station, but unsurprisingly that wasn’t wheelchair accessible.

I was trapped in a village where I had no friends. The local high school was (surprise surprise) not wheelchair accessible so I had to be taxied to a school near Cambridge. This meant all my friends lived about 20 miles from me. Like every 11 year old I wanted to go shopping on Saturdays with my peers; I never could. This was why catching sight of an accessible bus meant everything to me. It held the optimism of a world that I could be a part of.

It was 10 whole years later that I travelled by bus for the first time; and that was in America too. The summer before going to university I decided to spend a month backpacking around the US. My first port of call was Los Angeles and on my first day I caught the 156 from North Hollywood down to Santa Monica Boulevard where I changed onto the 4 down to the beachfront in Santa Monica. So momentous it was that I’ll probably remember the numbers of those buses well into old age; long after I’ve become unable to recall my own name.

Now I travel by bus all the time I’d recognise that journey for what it is: Slow, boring, hot, and full of people that smell terrible. But at the time in August 2000 I felt so free and included. I think you probably need to have been excluded from bus travel for 21 years to realise how liberating it is to be able to catch one for the first time.

A month later I moved to London (well, Uxbridge, but it’s within Greater London) to go to university. The U3 and U4 routes going from the Brunel campus to Uxbridge town centre were accessible, but that was it. I couldn’t get the 207 to Ealing or the 607 to Shepherd’s Bush. Of course, being able to travel by bus was still so new to me that I was bloomin’ grateful for the couple of routes I could use.

The picture was far worse in Central London. When I first moved to inside the M25 there were no accessible buses in the centre of town, the majority of routes around the West End were those nightmare Routemasters. During the day, anyway: Most companies put accessible buses on their night bus routes and it always struck me as slightly bizarre that London transport was only properly accessible between midnight and 5am; like disabled people are the new vampires.

Thanks to the Mayor at the time - Livingstone - inaccessible buses were gradually phased out over the next 5 years. London waved farewell to its last inaccessible buses, the Routemasters running on route 159, in December 2005. In 2012 inaccessible buses still make up the majority of bus company stock around the country. Every time I venture out of the confines of London I find myself grateful to Ken for London’s 100% accessible bus network.

Sadly since he was replaced by BoJo in 2008 we’ve seen London’s most accessible vehicles – the Bendy Buses – taken off the road. Many prefer double deckers for taking up less road space, but London’s wheelchair users miss those Mercedes Citaros dearly. Even with the fact that on the early models the wheelchair ramp would jam if the driver tried retracting it while the bus was still ‘kneeling’. I was once the reason for the breaking-down of three consecutive 453s outside Old Kent Road Tesco’s…

I was also 21 the first time I travelled on The Tube. Most non-disabled people probably think it sounds bizarre to be having all these public transport-related firsts in your twenties. Just like the buses; I also got my first taste of travelling on underground trains in Los Angeles. Unlike our Tube the Red Line there is fully accessible. Even if a little scary because I’d seen Volcano and I kept expecting the train to fill with lava.

Ken may have abolished the inaccessible bus, but despite his good work the majority of tube stations remain inaccessible. Oh to live in LA. And not just for the weather.

In 2006 Livingstone’s administration promised that one third of London’s tube stations would be accessible by 2013. You can’t begin to imagine how much this thrilled me. At the time my nearest accessible tube stations were Westminster, Waterloo or Caledonian Road. All a bus ride from where I’d set up home in Camden. So I never used the tube. The prospect of being able to use one in every 3 tube stations meant I could get to most places in London by getting the tube to a station or two away from my destination and pushing in my wheelchair the rest of the way. I could make it across London in almost the same time frame as someone without a mobility impairment whereas it takes 2 to 3 times as long to make a parallel journey by bus.

Livingstone didn’t retain his seat in 2008 though. Johnson quietly cancelled access upgrades throwing away £20 million of taxpayer's money in the process. What you can’t really put a figure on is all the disabled people who can’t move freely around the city: How many people can’t go for jobs because the return journey to work would be in excess of 4 hours by bus when it’s a 1.5 hour return journey for a non-disabled person by tube? How much tourism revenue does London lose out on because there are no accessible stations in the West End? What about the emotional and social costs for people who are isolated in the suburbs?

If anyone's thinking of commenting with "but he had to cancel the upgrades! We ran out of money!" You can save your little fingers the trouble: Johnson managed to find the cash to fund his pet projects. He spent £1.4m per vehicle on the new Routemasters. A standard double decker is £190,000. It wasn't that he couldn't afford the upgrades on the Tube; he just doesn't care about access.

I am completely opposed to the cuts to benefits and public services. Most people of a similar inclination to me are also opposed to the Olympics and feel it’s unacceptable for the taxpayer to be spending billions on a fortnight long party when disabled people are being told that they’re no longer allowed to use the toilet in the night.

I don’t want anything to do with the games. I’m planning on spending a fortnight barricaded in my flat with a stockpile of food and DVD box sets. But I will never begrudge the games coming to town because the only tube access upgrades Johnson didn’t cancel were the ones essential to the Olympic strategy. The games leave behind a legacy of improved access to the tube and I will forever be grateful for that.

Transport for All published this table assessing the accessible transport plans of the 4 leading Mayoral candidates. Great progress towards a fully inclusive transport network was made under Livingstone; we then saw regression under Johnson. If we want to start progressing again, we need Johnson out of office. He doesn’t propose to meet a single one of Transport for All’s targets.

This isn’t just an issue for those who are currently disabled. Around one in 5 people have some kind of impairment. The figures are skewed by age as the majority of older people have some kind of age-related condition. If you want the tube to be fully accessible by the time your mobility begins declining then you need to vote for improved access to the tube now. Even if you’re convinced that you’re so healthy that you will still be running marathons when you’re 101; there’s a good chance that at some point in your life you’ll break your ankle playing football and be on crutches for 6 weeks. Just bear that probability in mind if you're thinking of voting Johnson because "he's a right laugh!"

I can’t stand the Labour party in its current state. They’re the ones who kick-started the horrific welfare reform by introducing Employment and Support Allowance in 2008. I have no confidence in the current Labour party leadership: I wouldn't trust Ed Miliband to run a proverbial in a brewery, never mind a country. Labour have moved too far to the right for my liking, though sadly I have to concede that out of all the main parties; they are the lesser of three evils. If a General Election were called tomorrow I’d vote Green without hesitation.

It saddens me that Ken rejoined Labour after serving his first term as London Mayor as an independent candidate. I would feel much happier putting my mark next to his name if he weren’t affiliated with a party I have no love for.

But put my mark next to his name I shall. Like I said at the start: His transport policies changed my life. At least now my second nearest tube station is accessible, even if the closest one to my home isn’t.

The post is something of a "two birds with one stone" job. Today is Blogging Against Disablism Day and London goes to the polls on Thursday. I think the word "disablism" does what it says on the tin and clearly a transport system which has wheelchair access at less than one in three stations is a transport system that discriminates against disabled people. So combining the 2 I'm blogging to appeal to Londoners to vote for a candidate that'll make the public transport system a little less disablist.

A couple of weeks ago I got a "Back Boris" taxi receipt. If he hadn't cancelled tube access upgrades I wouldn't have needed a cab.

In tweets because I'm in a hurry

Choose and book can go fuck themselves. Seriously. That's now 2 hospital referrals they've rejected for me. Budget hoarding bastards.

— Lisa Egan (@lisybabe) April 17, 2012

Last time I had to write a fucking essay to get them to accept a gastro referral. If a GP says a patient needs to see a specialist: They do!

— Lisa Egan (@lisybabe) April 17, 2012

Choose and book's job is to allow patients to choose the hospital they want to go to and book an appt. Not reject referrals.

— Lisa Egan (@lisybabe) April 17, 2012

I read an article about the NHS doing this to save money, and now I can't find it. My Google fu is getting worse.

— Lisa Egan (@lisybabe) April 17, 2012

And you know what else is getting worse? My fucking jaw! Which is precisely why my GP referred me to a specialist.

— Lisa Egan (@lisybabe) April 17, 2012

Priorities

First they came for the disableds,
and I didn't speak out because I wasn't disabled.

Then they came for the NHS,
and I didn't speak out because I wasn't sick.

Then they came for the grannies,
and I didn't speak out because I wasn't old.

Then they came for my pasties,
and suddenly I gave a crap.

♫...Health minister, I mean sinister...♫ #SaveOurNHS

Last week was a pretty ordinary week for me. On Monday morning I got up and went to see my GP so he could refer me to yet another specialist because yet another part of my body has gone wrong. From there I went to my local pharmacy for the second time in 2 working days. I go in there and everyone exclaims "hi Lisa!" I'm pretty sure it's not the kind of establishment the Cheers theme song writers had in mind.

On Wednesday I had a an appointment at a specialist hospital. The clinic in question I was attending that morning is totally unique, there is only that one in the whole country.

I got all this care on the NHS. Without question I wouldn't still be kicking around were it not for the care our health service provides.

Because I depend on the NHS so much, last week I also felt the need to go to a couple of "save our NHS" thingies. Unfortunately with so many of the services I depend on being under threat, going protesting is part of a fairly normal week now too. Rather ironically I couldn't go to the "hands around St Thomas'" vigil because I was sitting in a different hospital having medical implements shoved up my nose.

I've been one of the NHS's most loyal customers most of my life. Growing up with brittle bones I spent so much of my childhood waiting for x-rays that I could spell "danger" and "radiation" from reading the signs on the door at about the same age that most of my peers were getting to grips with "cat" and "dog". During my teens and early 20s I used the NHS much less, though still a bit more than Joe Average. From my mid-twenties onwards my life has been this thrill-o-rama of hospital appointments and increasingly long prescriptions: Some of my current health problems are related to my osteogenesis and some are not. Then there's those that are not really osteogenesis-related, but OI exacerbates them. I'm basically falling apart.

I know of people who are in favour of these reforms who've been mystified by the fact that I'm opposed to the bill but acknowledge stuff like this. It's quite simple really: I think that when you care passionately for something it's important to critically assess its failings as well as its achievements. Acknowledging that something could be better doesn't mean you want to see it dismantled.

I care passionately about my car. Because of my impaired mobility I need it for most excursions out of my flat. Acknowledging that the heating doesn't work properly and that I wish the heating worked better doesn't mean I want my car to be shoved in a crusher.

I care passionately about the NHS too. I need it to stay alive. Acknowledging that it often fails groups of people doesn't mean I want the NHS dismantled. I want to see the problems fixed, just like I wish Peugeot would fix my car's heating so it doesn't get progressively cooler the faster my car is going.

The thing is: The NHS can't fix their problems until they know that they exist, and where they exist. Just like Peugeot can't fix my car until they find where the fault actually is. Not being a petrol head I can't run diagnostics on my car to find the cause of the problem, but I can help the NHS find problems by writing a complaint when I encounter a useless doctor. Evidence like the aforementioned stuff on elderly care, or Mencap's work on people with learning difficulties getting failed by the NHS all help the NHS to identify faults so they can be fixed. Suing over clinical errors was a way of not only getting compensation for injuries incurred, but it was yet another way of providing feedback over where faults lie. The Legal Aid Bill puts that in jeopardy.

And quite simply there's the fact that the Health and Social Care Bill does nothing to improve the care received by the demographics currently failed by the NHS. If anything you can bet that such patients will receive even worse care under a more competitive system.

Another one of the NHS's big issues is waiting lists. Last week my GP referred me to maxillofacial because I need to see someone about my right temporomandibular joint. I need to see someone about it now, not in four months time. At this precise moment my jaw is hurting so much that the pain travels right the way around to the base of my skull. Not only do these reforms fail to address the issue of waiting lists, if anything they'll make matters worse.

When Lansley and co get on the defensive about the reforms they point out that Labour started the process of outsourcing to private providers. (Which is true, but it doesn't mean they have to keep up the practice.) Because it's been happening for a few years I've had a couple of experiences and know first-hand that it increases, rather than decreases, wait times.

Three years ago an orthopaedic surgeon sent me to have my knackered ankle MRIed. I was given an appointment to have it done six weeks later. Two weeks before the appointment I got a letter telling me that my appointment had been cancelled and instead I was going to be having my MRI at a private hospital because they were using private providers to cut down their waiting lists. So did this mean that I had my MRI sooner than the two further weeks I had left to wait? Of course not. Want to know how long I did wait? 10 months. By the time my ankle was finally MRIed it was a year since the consultant ordered it.

Once upon a time orthotists actually made orthotics. As a child I had countless splints made while I waited. Now all orthotists do is take a mould of the body part to be supported and send the mould to a private provider to make the product. The same orthopod that ordered the MRI also ordered orthoses to be made for my shoes. The ones I'm waiting for now have been sent back to the factory three times since they were first made, because the private company can't follow simple instructions. It's been about two years since I went back to the orthotist because the first pair had worn out, so can someone please explain to me how a two-year wait can possibly be justified when they could actually be made on the spot?

I'm really not sure I can face the prospect of waiting a year or two to get my jaw seen to.

Outsourcing to private providers doesn't just result in excessive delays and headaches from where you kept head-butting the wall in frustration; the consequences can be far graver.

The government want GPs to handle budgets taking that responsibility out of the hands of the PCT's. When my GP makes judgements about whether or not I need to see a maxillofacial consultant I want him to make that decision based on clinical need, not budgetary concerns. (Additionally there's the fact that GPs are so untrustworthy according to the government that they can't be allowed to make judgements on someone's fitness for work: That's the government's defence for why they "need" to use Atos). I'd rather my doctor spend his time doctoring, leaving the accountants at the PCT's to do the accounting. If GPs don't want to spend their time dealing with budgets they're going to need to employ the bureaucrats who've just had a severance package from their PCT which is a waste of taxpayers money. And if there's one thing this government like to bang on about: It's taxpayers getting value for their money.

But the big, big, BIG problem with these reforms is around the role of the Secretary of State. Initially the bill removed the obligation on the Secretary of State to provide a National Health Service. This would have been the end of the National Health Service that is accessible to all regardless of ability to pay. Thousands of amendments later the bill now only greatly reduces that obligation, rather than removing it entirely. But it's still likely to see people like me with many health problems, and no money, getting absolutely shafted once the obligation to provide an NHS has been cut back.

The government keep insisting that the reforms aren't about "privatising" the NHS. Yet we keep hearing about more and more services getting outsourced: And the bill hasn't even passed yet! Though ever increasing outsourcing isn't really surprising when you look at the list of politicians with ties to private healthcare companies. This is all despite the fact that patient care is worse under private providers (I refer you back to my own 2 experiences of outsourced "care") and our current system is more cost-effective. It's worth noting that that last linked article is not only from The Torygraph, but the writer freely admits that he has no ideological opposition to breaking up the NHS if a cheaper way of providing care could be found.

Nye Bevan famously said "the NHS will last as long as there are folks left with the faith the fight for it." I'm deeply worried that most people in Britain have become so apathetic and/or cruel (they let the horrific Welfare Reform Bill pass…) that there are no longer enough people with enough faith to keep this world leading, value-for-money, health service alive.

What can you do? There are 2 petitions to get the bill delayed until the government have published the risk register. One is from Avaaz, the other from 38 Degrees. You could also come to Parliament Square this afternoon, but you might want to be aware that yesterday's demo was just a tad over-policed.

♫ = Andrew Lansley Rap

♫...I'm sitting down here, But hey you can't see me...♫

I don't often do angry. I'm quite lazy and anger is a very energy-intensive emotion. But International Women's Day today is making me really fucking angry. Why? Because I've been erased from it. Or that's what it feels like.

I've read so many posts talking about how women are hardest hit by the current government cuts. Which isn't entirely true. It's something I've ranted about a bit before. Yes, non-disabled women are more affected by cuts than non-disabled men. But then disabled men are harder hit than non-disabled women, leaving disabled women right at the bottom of the shit heap. No-one is talking about this despite the fact that around 18% of the population have some kind of impairment. Roughly one in 5 women are being blanked by today's discussions.

I read a piece about how feminism doesn't represent working class women because all feminists are intelligent and articulate and working class women aren't. So does that mean I'm not intelligent or that I'm not working class? Which part of me must be erased so I fit neatly into what I'm supposed to be? My only pretension to being middle class is that I occasionally eat houmous.

My class and my intelligence are both affected by my impairments. I've always had impaired mobility but until I was 26 I was perfectly healthy; I just had a crappy skeleton. Had I not become chronically ill I'd probably have socially mobilised my way into middle classedness by now. Instead I live on benefits, in a council flat, and buy my clothes in supermarkets because that's all I can afford. And people with OI are usually above average IQ. Though AFAIK it's not known if that's a quirk of genetics or just because we spend our childhoods so bored at spending so much time waiting for x-rays that we can spell "danger" and "radiation" from repeatedly reading the sign on the door at about the same age our peers are getting to grips with "cat".

I also read a piece about how offensive it is to women that the language of mental illness is quite women-centric. "Lunatic" has connotations of the menstrual cycle, while "hysterical" pertains to the uterus (think hysterectomy). As a woman with depression I'm pissed off that women without mental health problems are supposed to be offended at being compared to me.

There are calls for women to rise up and challenge the patriarchy. Would the revolution be accessible to me? I doubt it considering I'm not even allowed to be part of the debate.

You might also like... 'Caitlin Moran and feminism’s ableism problem' on The F Word

♫...When I look at the television, I want to see me staring right back at me...♫

Been doing some media whoring the last few days talking about the blue badge reforms that came into effect yesterday.

First there was BBC Breakfast on the tellybox. This was followed about 15 minutes later by Five Live (the beeb getting the most from the money spent on having a car take me to Television Centre):



BBC Sussex/Surrey (they were both broadcasting the same show today) heard Five Live and subsequently wanted me on their show this morning. What I didn't know in advance was that I'd be debating with transport minister Norman Baker MP. Here's what happened:



Gutted I didn't get to rebut his final speech. C'est la vie I suppose.

Thanks to @uwitness and @goldfish for tech help with making audio happen.

♫...The speed so fast I felt like I was drunk...♫

In the late-ish 90s I was doing my A Levels for the bazillionth time (ever indecisive I couldn't just pick a subject and stick with it. I kept changing my mind, quitting that subject, and starting something different the following September). Text messaging was the new cool thing and I loved it. Struggling to understand what people are saying when I can't see their lips move meant that mobile telephony was difficult: When you're having a conversation with someone and you're both in the relatively background noise-free environments of your home it's fine, but roaming communication meant people would phone from the pub while you were in the supermarket and the background cacophony drowns out any hope of following the other person's words. But texting... No hearing necessary: Communication on the go without me constantly shrieking "you what?"

The minute someone taught me how to send a text I was in love with the technology. I thought it was the greatest thing since sliced bread. Well, greater really: Slicing bread yourself isn't all that hard. It's certainly easier than decoding a drunk friend's speech at 3am when you've got APD.

My A Level theatre studies teacher was not a convert. She decried that such short, swift, exchanges would be the death of human communication. I, obviously, scoffed. How could such a wonderful idea opening communicative doors possibly be a bad thing?

I'm starting think that she might have been right.

Don't get me wrong, I'm a huge fan of texting, tweeting and Facebooking. Two weeks ago I was in a meeting and the chair tried to avoid using the word "twitter" because he knew I'd start proselytising. Again. But such speedy exchanges have altered the way we interact with each other and I'm starting to pine for the days when people were reliable.

I should say at this juncture that - yes - I know this post makes me a massive hypocrite. I'm well aware that I'm just as flaky as everybody else these days. I'm just as susceptible to life zooming past me as everybody else on the planet. But that doesn't mean I have to like it.

Everything being so immediate has its drawbacks as well as its merits. I like that I can tweet about a ludicrous conversation with a salesperson and have that company's customer services get in touch with me within a couple of hours because my tweet spread like wildfire. When I'm so ill that I can barely remember my own name I like that I can post one word answers to a question on Facebook without feeling a cultural obligation to ask "and how are the kids? Did your dog recover OK from getting his knackers whipped off?" (That last question especially doesn't go down well with someone who doesn't have a dog and you've just conflated them with someone else.)

I hate that not replying to people has become acceptable because it's just the norm now. With a few exceptions I've learned that if I haven't had an Email back from someone within about 6 hours of me sending then I'm not going to get a reply at all. Most notable exception was in May 2011 when I got a reply to an Email I sent in Dec 2008, but most people don't trawl through 2.5 year old Emails.

I think Twitter and Facebook have a large part to play in creating this environment of immediacy. I think we all follow/are friends with more people than more people than we realistically can keep up with. I don't get to see every tweet from every person in my twitter timeline any more because there's just too many tweets. I'd love to have a cull, or at least to stop feeling compelled to add more people, but there are just too many fucking awesome people on twitter that I just can't not follow. Even if it does mean I miss quite a few tweets from everybody because I just can't keep up: Keeping up with a fair few tweets of 198 people somehow seems more acceptable than only following, say, 100 awesome people but getting to see all their posts. Because I get an extra 98 people's worth of awesomeness, even if it's only intermittent awesomeness.

But this blasé attitude has spread beyond twitter into the rest of our lives. We check our Email and we deal with the really urgent stuff and leave the rest "until later". Except with us all being so in the present these days "later" never comes. The next time we check our Email we, once again, deal with the pressing matters while the "till later" stuff gets shunned to page 2 of your inbox and ends up forgotten entirely.

Blogging is much the same. It used to be the case that I'd read all the blog posts in my RSS feed reader. But now I, like everyone else, only read something if I happen to be online when it's posted because we're so present-focussed we don't scroll down any more. Seven years ago your latest blog post would get just as many hits if you posted it at 11pm on a Saturday as it would if you posted it at 11am on a Monday. Even if the hits didn't come in until Monday morning, the post would still ultimately get read. This is no longer the case. I find myself more and more advance-scheduling tweets and blog posts to be published at time when I know the internet will be busy.

All this means that we tend to keep repeating ourselves. When we write a blog post most people won't just tweet the link once and leave it; they'll keep on posting at different times of day to attract an audience. If you send someone an Email and they don't reply you're faced with the choice of having to either just forget about it or chasing them up. I really hate both of these things.

I can get really paranoid about being annoying. Most of the time I'm fine with it: My high-pitched voice, rapid speech, and opinionatedness do not endear me to the masses. Usually it's my conclusion that they're arseholes for not wanting to listen to me. But sometimes, when I need someone's help, I can't just say "oh, fuck it. I won't chase them up." And when I have to chase someone up I become acutely aware of how annoying I am.

(I should be clear that this isn't a self-loathing thing and other people find me not at all annoying; quite the opposite. I had no problem with being annoying until other people told me how grating I was. And they've told me that in great numbers.)

Welfare reform is currently making me crazy. Actually properly crazy. But I refuse to give up fighting just yet because I would actually like some kind of future. I know we've only got a few weeks left before my fate is doomed, but until that time I can't not fight.

This need to fight while extra crazy is just making my neuroses worse. If I Email someone who has got the capacity to be of some use in the fight against welfare reform but I don't get a reply, what should I do? Well, obviously, I should chase them up. My Email's probably fallen to page 5 of their inbox by now and is never going to get a response unless I do. But I really wish they'd reply of their own volition and save me the time spent sat in the bathroom, in the dark, rocking back and forth repeating "oh God, I'm a terrible person. Oh God, I'm so annoying. Why do I have to be such an awful person? Oh God I'm such a bad person. I wish I wasn't so annoying."

And as for repeatedly tweeting the same thing over and over just to get the message out to people who happen to be online at different times of the day: It'd be interesting to do an experiment to see if people found it easier to keep up with all the people they follow if it wasn't the norm for everyone to post the same thing several times. I don't need The Huffington Post to tweet the link to the same article 3 times in as many hours, and if they didn't then perhaps I might have caught the tweet in which a friend was having a crisis.

My main problem with repeatedly tweeting the same content is, again, that I can't do it because it sends me into mini-meltdown about being too annoying. I have few enough followers as it is without boring the few I've got into abandoning me because I just post the same shit again and again. And giving someone an @ message requesting a retweet is another behaviour that'll make me weep with guilt if I try it.

I'm a big fan of the technology that allows us to communicate so instantaneously. I love that I can have these swift non-verbal interactions with anyone anywhere in the world. Twitter and Facebook are so valuable to me as a poorly person. From May to October this year I didn't write anything longer than a tweet because I just wasn't well enough. But these short, rapid, interpersonal exchanges saved me from being completely isolated in that time. You can tweet using your iPod in bed, you can tweet from a hospital waiting room, you can even sometimes get sufficient signal in the hospital basement to send a text between x-rays. You can check Facebook while waiting for your pharmacist to dispense your vast quantities of medicines. Last week was the 3rd anniversary of my mum's death. One of the first things I did when I stopped screaming that night was to tweet the fact because I wanted support from my friends around the world.

It genuinely makes me quite sad that my old teacher turned out to be so prescient about the death of communication; or at least the death of quality communication. I'm a big fan of short, rapid exchanges you get via text or on Twitter; but did we really have to abandon "old school" replying to Emails and so on? Have we as a species become so wrapped up in our fast paced 140-160 characters world that we can't find the time in our lives to read/write anything longer? Have we become so present-orientated that we really can't reply to any Email sent more than 6 hours ago. Even if it's a really important one?

Stop this world. It's spinning too fast. I want to get off.

♫...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."

♫...So come on let me entertain you...♫

Nine years ago an old friend sat on his living room floor and uttered one sentence which would change my life. Yesterday I saw him for the first time since that night.

In July 2002 I was doing a week's work in a school back home in Cambridge. It was after my parents had moved from Cambridge to the arse-end of nowhere so I crashed at some friends' house in Ely for the week. One night I was in the pub which had kinda been my local for the last year I lived in Cambridge; when in walked someone I'd gone to Long Road with about 6 years earlier and had not seen since.

He was living in Brighton at the time and was also on a fairly fleeting visit back to Cambridge. After lots of talking we agreed that I could stay at his in Brighton after Pride the following month.

So the night of Pride in 2002 we sat in his living room talking half the night and getting even more wasted than we already were. I mean so wasted that on the train the next day I was grateful for those shitty old trains where wheelchair users had to sit in the guard's van out of sight of all the non-disabled passengers. No-one could see how green I looked and I could occasionally whimper because there was no-one around to hear it.

At one point I said something that made him laugh: Made him laugh so hard that he fell off his chair. Once he'd regained enough composure to be able to speak he said "you should do stand-up."

I don't remember what I said, but I'm sure that under the harsh light of sobriety it wouldn't be remotely entertaining. However, his remark sparked a thought process in my head that I couldn't shake off.

I'd been a fan of stand-up for a long time. Like most people my age, my introduction to comedy was The Mary Whitehouse Experience. The first time I saw it, aged 12 at a sleepover at a friend's house, I remember laughing so hard I couldn't breathe: It was the single greatest thing I had ever seen. In 1992 Both Newman & Baddiel and Punt & Dennis toured the UK and played at the Cambridge Corn Exchange. I remember Newman & Baddiel came to town in April 1992; my 13th birthday was in May and I begged so hard for tickets as an early birthday present. That gig was the first time I saw live stand up, and was followed about 2 months later by seeing Punt & Dennis. Having had my appetite for stand-up whetted I saw several other comics off the telly when they came to town like Jo Brand and Jack Dee. And, of course, Newman & Baddiel and Punt & Dennis a few more times.

I'd always loved performing but the thought of being a stand-up had never crossed my mind. I actually kinda thought that being that funny was like a superpower and it wasn't something that regular people could do. His comment triggered this niggle in my brain that "well maybe I could do it?"

I spent the next two years procrastinating on the idea, while seeing loads of comedy. I regularly went to comedy clubs, to see solo shows at theatres and I went to loads of TV and radio comedy recordings on account of them being free and me being a poor student. It wasn't unheard of for me to go see comedy 4 or 5 times in a week.

When I started doing stand up in November 2004 I very quickly realised that I'd found what I wanted to do with my life. I loved it. Of course, I'm the unluckiest person in the world so stand up dreams were shattered by illness.

I gave it up in 2007 when I became too ill too often to carry on. I was hoping that my health problems would only be temporary and that a few pills here, quick operation there and I'd be good to get back to it. So I decided to bow out before I alienated every promoter in the country. If you're booked to do a gig and you have to cancel on the day because it's a "spend the day in bed with a bottle of morphine" day then you're going to put that promoter in a bind. It doesn't matter that you're genuinely ill, you've left that promoter in a tight spot with a gap in their bill and only a couple of hours to fix things. So they're never going to book you again and are probably going to badmouth you to other promoters that they meet. Luckily the only promoters I pissed off with my health-related unreliableness were small fish rather than any of the really key national bookers. But it was only a matter of time.

It's looking increasingly like I'll probably never be well enough to work again. Kinda ironic really that the current political situation for disabled people in the UK has given me so much I want to say through the medium of comedy; more than I've ever wanted to say before. And the stories I want to tell are so shaped by being ill that I probably wouldn't have the same stories to tell if I was well enough to go out and tell them.

It was politics that led me to bump into him yesterday. I quickly popped in to the Bank of Ideas to check out the access so I could write it up on WtB. I'd been in the building only a few seconds when someone brushed past me and mumbled "Hi Lisa" as he did so. It was him; the guy who'd told me to do stand-up. We didn't chat long because I couldn't stay; this current infection had me feeling like I was dying. Honestly on the bus home I felt almost as nauseated as I did on that aforementioned train journey 9 years ago. We were catching up and he said "I know you're a comedian now..."

"And I have you to thank for that. Do you remember that night 9 years ago when I crashed at yours after Pride? I said something that made you fall off your chair laughing and you told me I should do stand-up."

He didn't remember.

♫...Tonight, tonight, won't be just any night...♫

I had a problem with last week's episode of Glee. And for a change it had absolutely nothing to do with disability. I mean, obviously, there were a few awful stereotypes about wheelchair users because it wouldn't be Glee without them. My issue was actually about something even more sinister.

I've been asked why I watch Glee when all it does it raise my blood pressure. It's quite simple: The social politics of disability is one of my favourite topics. Television is another one. So representations of disability on TV is my specialist subject. And Glee is so awful and so offensive I watch it for the joy of ranting about how horrific it is. I need to get my righteous indignation from somewhere. And besides; my blood pressure is usually at the low end of normal, occasionally veering properly into low: Getting angry at the telly is probably good for my health.

Or at least, that used to be why I watched Glee. I'm gonna make a confession now and if anyone holds it over my head I swear I'll turn them into a human cannonball as part of a cheerleading display. And that confession is...

When Kurt and Blaine got together they absolutely stole my heart. They're just the cutest little couple. I started enjoying watching the show (or at least their scenes) and making high pitched squeeing noises when they were being all adorable. I think the last time I saw a telly couple so cute was in that episode of Torchwood when Jack met the original Captain Jack Harkness. (Which makes me wonder why the adorable telly couples are always gay men? Lafayette and Jesus in True Blood also stand out in my memory as sweeties. Where are the "awwwww" lesbians? Or even straight couples for that matter? OK, maybe Grissom and Sara were pretty sweet and my opinion was clouded by envy of Grissom because Sara Sidle is the woman of my dreams. Sure there's the budding Brittany/Santana romance in Glee; but Santana's a bitch and Brittany's a caricature: Hardly an "awwwwww" couple. Anyway...)

That Kurt and Blaine are just so adorable they can melt my cold, misanthropic, heart was what made one specific scene in The First Time (link contains spoilers) stand out as particularly horrific.

Double warning of both spoilers and triggers: Below the jump are both plot details for last week's episode and discussions of sexual assault.

♫...Take the National Express when your life’s in a mess, it’ll make you smile...♫

On October 9th (yes, I know it's taken me nearly a month to write this up, my health sucks) I took part in UK Uncut's Block the Bridge, Block the Bill protest.

Just like the last UK Uncut thingum I went to; I did a few funnies. Only this time the fab @miggiuk filmed it:



I apologise for saying "erm" and "you know" quite so much. You have to remember it's more than 4 years since I was forced to give up comedy due to illness so I'm rather unrehearsed these days. Miggiuk filmed all the comedy and put it on YouTube so after my ums and ahs go watch some other people who are properly funny as a palate cleanser for the soul.

There's a transcript below the jump. I'm afraid I don't have the techno know-how to turn that into synchronised subtitles on the video itself so if anyone does then please let me know.

♫ = National Express by The Divine Comedy

Ricky Gervais and the politics of Mong

I've just realised how long it is since I last blogged. I knew I'd been ill for a while but I didn't realise it'd been nearly 6 months.

You know that feeling when you've eaten a huge, huge, meal (e.g. on Xmas day): You feel exhausted because all your blood has rushed to your stomach leaving no energy for the rest of your body to do anything. But at the same time you can't sleep because your digestive system is working so hard. And of course you can't force any food down because you already feel like you're going to explode. Normally the sensation only lasts a couple of hours until your system has made good progress of dealing with the oversized meal.

I've felt like that since the beginning of June. I've spent much of the summer depending on meal replacement drinks because I couldn't force any food down. I've had no energy to do anything (e.g. blog) because my digestive system has been being so irrational and I've also not been sleeping because of the digestive mania which has been increasing the sensation of exhaustion.

Despite the fact that I'd much rather be lazing, watching telly and eating Cadbury's Deadheads (because they're the only thing I've managed to eat today without ending up bent barfing over the bog within 60 seconds) I felt I had to quickly comment about this week's Ricky Gervais mong twitstorm. Everyone else is blogging about it and I just love a bandwagon.

It seems a lot of people don't know the origin of the word, so in a nutshell: It's an impairment-specific insult and refers to people with Down's Syndrome. In the 1860s Dr John Langdon Down decided to classify people with learning difficulties by "which country they looked like they came from" (really!) and he thought people with an extra 21st chromosome looked like they came from Mongolia so named the condition 'Mongolism'. (Later renamed after Dr Down because the Mongolians took offense.) So 'mong' isn't really associated solely with people with DS, it's also a slightly racist term with regards to citizens of Mongolia.

Gervais apparently thinks he has some kind of "right" to reclaim the word "mong"; despite the fact that - as far as I'm aware - he does not have Mongolian citizenship. He maintains that the definition of mong has moved on and it's no longer anything to do with Down's. Though that argument loses credence when you realise that 4 hours later he posted a tweet using the word "twongols", clearly derived from the term "mongols" further establishing the link between "mong" and the outdated diagnosis of mongolism.

It's been quite big news with most papers and radio shows discussing whether or not "mong" is offensive to people with Down's. I've seen quotes from Nicky Clark, Richard Herring and Christina Martin on the offensiveness debate. Odd thing is: They're all non-disabled. Don't get me wrong, they're all great disability rights activists and I value their contributions to making the world a slightly better place. I'm constantly pointing out how much we need non-disabled people to give a crap about disability issues. So I'm gonna repeat it and italicise it this time to really drive home my point: they're all great disability rights activists and I value their contributions. And I have no issue with them giving their opinions on these issues when asked for them.

But it's odd that when the subject is "is mong offensive to people with Down's Syndrome?" That the only people being asked for their opinion on the subject are non-disabled disability rights activists. Radio presenters would never ask "is using 'gay' as a pejorative offensive to homosexuals or has the meaning of the word changed?" Without including LGBT folk in the debate. So why aren't people with Down's Syndrome invited onto the radio to discuss how they feel about Gervais's words? Why is it only non-disabled people who are being asked for their opinion? That's the bit that bothers me; not that non-disabled people are giving their opinions, but that people with Down's are not being asked.

Not only is the exclusion of people with Down's from a debate about Down's almost as problematic as Gervais's original tweets, it also seems like a circular discussion that we'll never reach the end of. People without Down's can express their opinions but until we ask people with Down's Syndome "does mong offend you?" We'll never have a definitive answer to the question "is mong offensive to people with Down's Syndrome?" AOL can run polls asking the general populace their opinion but until people with an extra 21st chromosome are included in the debate it's all very abstract and inconclusive.

I'd be particularly interested to hear the opinion of actor Russell Ramsay who was in an episode of Extras so having worked with Gervais probably has an insight into both sides of the debate. (Random fact: When I was a child my parents would drag me kicking and screaming to church every week. I went to Sunday School with Russell. Haven't seen him in at least 20 years though.)

Despite the fact that we haven't yet got a conclusive answer as to whether or not people with Down's find "mong" offensive today (because they haven't been asked) the history of the word is clearer: It's historically a term of abuse and a form of hate speech. Disablist hate crime is on the up due in no small part to the bullshit rhetoric being peddled by the government and press in attempt to whip up support for welfare reform. People are getting called a "scrounging cunt" in the street or being followed down the road by someone shouting "fucking DLA stick" at them. That Gervais is using an historically abusive term so liberally and encouraging his fans to use it is pouring fuel on the already raging fires of hate. Ironically Gervais is calling people who disagree with him "haters" and stipulating that they only disagree with him because they're jealous of his success. If being successful means that you feel superior to members of oppressed minorities and have a licence to use abusive language then I'd rather remain unsuccessful but a decent human being.

♫...So scared of breaking it that you won't let it bend...♫

There's an awareness day for everything these day. And so today is that day for my mobility impairment. Today is Wishbone Day, raising awareness of osteogenesis imperfecta.

There are lots of mythconceptions about OI around. Most notably the lies peddled in the dreadful M. Night Shyamalan film Unbreakable. Despite it being 11 years old, and you'd think most people would expel a film that dire from their memory, I still get people saying "oh, like in Unbreakable?" When they find out I have OI.

No. Not like in Unbreakable. For starters when Samuel L Jackson "explains" OI in the film he claims that type I is the mildest and it's a spectrum through to type IV which is the most severe and usually fatal at birth if not before (no mention of types V to VIII but I think at least some of those hadn't been discovered then). I am a 31 year old type IV. My mum who was also a type IV made it to 70 before dying from her familial predisposition to drop dead from heart failure at a reasonably young age. OI was not a contributing factor in her death.

It's actually type II that's fatal. Type III is usually pretty severe. Type IV varies from very mild to almost as severe as type III. Type I is different to the other 3 well established types. Bone breakage in types II, III and IV is the result of poor quality collagen. Collagen being the protein that provides reinforcement for bones. Type I is the result of a lack of collagen rather than the right amount of crappy quality collagen so it's quite different to types II - IV. There are type ones around who've had more fractures than me so to claim it's the "mildest" type is untrue.

There are many other inaccuracies in the film. By casting a non-disabled actor to play a person with OI he was, unsurprisingly, lacking all the physical characteristics of the condition. Elijah says he's had about 50 fractures; roughly the same number as me. Medical care of people with OI is constantly improving and Elijah was much older than me so he would've had worse medical care than I did when I did the bulk of my breaking as a child. Between not being very sturdy to begin with and then being constantly broken; bones with OI tend to bend. The bones in my right forearm have a bend in the middle of about 80°. The bones in my left leg are bent to about 30°. Had a I received the medical treatment a child with OI would receive today my bones would be less bent. They probably wouldn't be as straight as a person without OI's, but they'd be straighter than they are.

Elijah, being roughly the same as me in severity, should have bent bones. Bones bent more than mine because even less effort would've gone into straightening them. Samuel L Jackson not having OI has perfectly straight bones. Total credibility fail.

The other glaringly obvious characteristic fail is the eyes. Because collagen is the protein that makes the whites of your eyes white, most people with OI have blue scleras. Most, but not all. However, the people that do have white scleras are not type ones. Types ones always have blue scleras (like I said, it's different to the other types). SLJ does not have blue scleras. They could've made his scleras appear blue of course, in many films and TV shows you have demons and other monsters with completely black eyes. Tinting SLJ's scleras wouldn't have been too hard, whether through contacts or SFX in post-production.

So, yes. My impairment is nothing like Jackson in Unbreakable. Also, spending a lot of time in hospital as a child doesn't turn you into a terrorist.

Unbreakable isn't the only film to peddle poor facts about OI. Amélie is considered by many to be a piece of loveliness. It made me want to punch my TV screen. Amélie's neighbour with OI lives in a padded flat. Though perhaps I could do with his padded tellybox so that if I did end up punching it in frustration I'd be less likely to break my fist.

People with OI do not live in padded houses. There's no point. Breaking your bones is such a random thing. I've fractured my spine while sleeping on something soft and padded whilst conversely I've gotten drunk, fallen down a flight of steps in a club, and not broken a thing. Over-cautiousness can actually result in a reduction in bone density so living in a padded house can make you more, not less, likely to break.

I'm a big fan of forensic TV shows so obviously I watch Bones. OI has cropped up a couple of times, once just as a mention with regard to some ancient bones that Brennan had been looking at. In the episode "The Truth in the Lye" in season 2 they found some bones in a bathtub on a building site. Brennan looked at the bones under a microscope and noticed the lack of collagen.

The big fact fail here was with regard to reproducing. Bones said that in all the other types OI is the result of a spontaneous mutation but sometimes it's inherited in type ones. Hello! Type IV child of a type IV right here! And I'm not unique, I know tonnes of types IIIs and IVs who've had kids. When a person with OI has a child there's a 50% chance of the child inheriting it. Yes, OI is often caused by a spontaneous mutation. In the case of my family my mum was the mutant and I inherited it from her. But claiming that it's only type ones that breed is ludicrous.

The most common storyline when OI crops up in film and TV is that of parents being falsely accused of abuse. It's been done in Home & Away, ER, Casualty and many more shows.

It's an incredibly serious issue and unlike the other OI storylines I've mentioned it's one that's usually fairly realistically represented.

The Home & Away storyline was in the days when Pippa had a house full of foster kids. She fostered a child who'd been taken away from his parents because his recurrent broken bones had led to his parents being accused of abuse. Whilst in Pippa's care he broke his arm. Pippa took him to the local hospital where he was treated by a doctor who didn't sleep through the lecture on OI in her medical training. She diagnosed him and he was returned to his parents.

In ER Carter treated a kid who'd been brought in with a persistent cough. A chest x-ray revealed numerous broken ribs. Carter ordered full body x-rays and found that the kid had old and healed, currently healing, and fresh fractures all over. Carter called the police and social services claiming the mother had been beating the child. Carter performed a lumbar puncture on the baby and then took some more x-rays. Looking at the second set of x-rays Carter noticed that there was a new rib fracture not on the first set of x-rays and realised he'd broken one of the kid's ribs whilst doing the lumbar puncture. This resulted in him diagnosing OI and calling off the hounds.

In real life however, these stories don't always have a happy ending with the kids being returned to their parents. In some cases the children end up being adopted before diagnosis and adoption orders cannot be undone. Even when the child is returned to the parents it's often after the psychological scars of the child being fostered have been inflicted on both parents and child.

These days there are many diagnostic tests available for OI, there's no need for families to be destroyed. But it still happens because doctors don't think to check for it and social workers - in this target-driven post-Baby P era - don't mention it because they're desperate to whisk kids away from parents to meet their targets for kids fostered.

Wishbone Day could be a wonderful way to target doctors and social workers, to make them aware of OI, the clinical presentation, how to differentiate it from abuse, and how to test for it. But from what I've seen that level of awareness-raising aimed at the people who need it isn't happening. It's seems the thrust of Wishbone Day is "wear yellow and do the Facebook status meme," which isn't going to raise awareness amongst the people that need to be made aware. I'm aware that even this post picking apart media myths of OI is slightly redundant because it'll mostly only be read by people that know me so aren't gonna be taken in by Shyamalan's bullshit. So I'm being no more helpful to the cause than those who are simply changing their Facebook status and I throw my hands up and admit that. We need awareness targeted where it matters: A&E staff and social workers. Until that happens I think Wishbone Day is a bit wishy washy.

The #no2av campaign's preying on the uneducated

I've just been talking to my dad on the phone. He has a postal vote so has already voted in the referendum.

My dad will be 77 in July. He grew up long, long, before disabled children had any right to be educated. He was ignored in mainstream school and then sent to a segregated college where he was taught nothing much. No-one taught him to read until a family friend took on the challenge when he was 21.

In addition to poor literacy due to no-one bothering to teach him until he was an adult he's almost certainly dyslexic. They didn't do much diagnosing of that during World War II.

In addition to that it's only been in the last 2 and a half years since my mum died that he hasn't had anyone living with him to help him understand things like the instructions on a polling card. He can read well enough to read the names on a card and identify which are his preferences. He can also count to three so would be capable of ranking his preferences in order.

One of the "no" campaign's loudest cries is that AV is too complicated for the masses. That you need to be some kind of genius to work out how to fill in a polling card under AV.

Out of fear that he wouldn't understand how to vote under AV; out of fear that AV is too confusing and too complicated, my father voted "no".

I am furious that the "no" campaign are preying on people like my dad by telling them they're too stupid to understand AV.

If my dad really believed that FPTP was a better system than AV I'd respect his choice. But that's not why he voted "no". The "no" campaign took advantage of his poor education, of his illiteracy, and his almost certain dyslexia by telling him that under AV he wouldn't be able to understand his polling card. They told him he was stupid and he believed it.

How many more people are going to be tricked into voting "no" because the campaign are preying on their poor education, their learning disability or insecurity about their intellect and telling them that they're just not smart enough to get it?