The Paralympic IPC Says I’m Not Disabled

Please forgive the rage that is about to ensue. This post is purely a “get it out of your head quickly” post.

This year I discovered wheelchair racing as a means to defy my enormous decline in physical health. I’ve blogged about this before & how it is the first sport that has not caused me excruciating pain. About how I finally felt able to participate in something physical. About how the inclusive nature of my team mates boosted my mental health immensely. I have my 1st post-holiday training session tomorrow evening & right now, for the first time ever I don’t want to go. Why?

Fast forward to tonight where I happened to stumble upon a twitter conversation about disabled sport classification by the IPC (in oder to take part in “real” races, you must be classified). They have released a statement specifically excluding Ehlers Danlos Syndrome as a qualifying disability for disabled sport. What this means for me is being treated as an able bodied athlete (you can stop laughing now…. seriously, stop it.) and as such can only participate in open races with no chance of joining my friends on the track for races against people similarly matched to my own actual ability.
Ok, I was never destined for anything other than local competitions & having fun, but I have rarely wished my genetics on anyone, however I’ll make an exception here. Especially after this news story. I am more than a little bit gutted. Any visions of progression in my one physical outlet (no matter how far fetched they may be) have been dashed because someone decided that one type of disability was “better” than another. 

How dare they exclude genuinely disabled athletes because they don’t fit into a neat little tick box?! You are a professional body and as such have an obligation (if not legally, then morally) to pick up a goddamn book and read about conditions that cause a spectrum of disability. If you ever wondered why  Ehlers Danlos Syndrome is considered an Invisible Illness, here is you prime example at the very highest level.

What does your not disabled look like?

It looks like a full time wheelchair user

It looks like someone who fights with their racing chair & dislocates joints and keeps going.

It looks like chronic pain that eats away at you & makes you question at 2am exactly why you keep going.

It looks like more medication than I can count on two hands.

It looks like my husband having to cook for me, and help me wash & dress myself. 

It looks like strapping myself with physio tape to keep joints in place. And when that doesn’t work, biting my cheek to stop myself crying from pain in front of the kids I train with.

It looks like being lifted from my racing chair into my day chair due to no sensation in my lower legs because my spine is slowly curving & compressing my nerves.

Now tell me how perfectly able I am.

F*** you IPC and the bureaucratic horse you rode in on.

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#YesICan or Can I?

Channel 4 has just released its advert for the 2016 Paralympic coverage with an emotive advert. 

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Following this, I read a blog post from the Crippled Scholar that made me react in a way I wasn’t expecting. She raised some very legitimate concerns about the advert & yet I felt instantly defensive. Why?  I’m the least sporty person on the planet… or am I? Perhaps it’s because I know one of the athletes in the advert, or because more recently sport has impacted on the way I view my own disability. So rather than try to tweet a response, I thought I’d lay out a stream of consciousness here.

One criticism is the use of the term superhumans. In the context of it being disabled people achieving everyday activities and met with applause, then yes, take your ableism and insert it into yourself in whichever orifice you choose. But when it comes to athletes, some of these people are just shy of X-men. At our local Race for Life 5k, Lizzie beat every single runner by finishing 1st place in 17 minutes by propelling herself in a racing wheelchair. It doesn’t take anything away from her to acknowledge her disability & say that she’s bloody awesome.

On the flip side, there is the potential for making a big fuss of disability sports to create that god awful motivation crap with the “the only disability is a bad attitude” slogan. (I’m still smiling at those stairs Stella). The author of that poster ought to read what the definition of disability is.

I think the major tell here is to look at how other adverts describe the able bodied athletes. 

In the P&G advert, they are portrayed as oddly traumatised & moulded by their mothers – this does show how hard they work, but rather suggests that Dads aren’t as important and that you need some sort of adversity in order to be a winner.

The BBC advert is just a bit weird with a sloth doing gymnastics & an anteater on the shot put. No suggestion of being superhuman, but there’s that whole rippling muscles theme.

https://youtu.be/CKcEySuuUuE

I think from all of these, the only message is that advertisers are playing to an agenda and won’t please everyone. Based on the adverts I’ve found, despite initial grumbling, I’ve found myself agreeing with the Scholar & the raised eyebrow at the Superhuman term is probably valid as it hasn’t been used equally for the able bodied athletes who also deserve the same recognition for being a little bit amazing.

The second concern is one I feel much more qualified to answer. The ‘yes I can’ song was initially a bit cringey & the scene with the school saying no you can’t even more so. But actually, there’s a message here on a number of levels:

To individuals- don’t feel that because you have a disability, it’s game over (especially when those who believe they know best tell you to give up). I spent my entire life avoiding physical anything because of chronic pain and continual injury. Earlier this year I tried going to a local gym & cried with frustration having been wheeled past the bins to meet an instructor that couldn’t comprehend not using a treadmill despite being in a wheelchair… It would’ve been easy (and perfectly acceptable) to give in, but our school is all about Grit & Zest & Growth Mindset & other ones… whatever – I’m a stubborn old bat who won’t give up (Also known as gritty). Later, when I announced that I was going to try wheelchair basketball, family & friends were horrified. It turned out that no, that wasn’t the sport for me – the risk (and reality) of dislocation was too much. But then I discovered wheelchair racing & everything changed. After 36 years, I found my sport. I still dislocate most sessions, but rarely a major joint, and I’m building strength & stamina in my upper body that has a knock on effect on my dysautonomia. Mentally, I’m in a much better place because I’m told twice a week that I’m a racer & doing great.

The reality is that I’m still dragging myself around and finishing so exhausted that I want to vomit & my arms are constantly sporting the bruises that come from pushing smaller rims  (racers badges of honour). I may look like a wheezy flintstones car, but in my head I feel like a superhero.

To parents / partners /friends: the loss of mobility doesn’t prohibit your loved one from trying something new. Please don’t hold them back in case people stare or laugh. Yes, the gym bunnies look at me like I’m an alien when I rock up in the (new) gym in my wheelchair & use the handcycle, but when I arrive to chair racing with my fellow wobblies, I have never known a more supportive atmosphere. Our coach is a volunteer and does it because he’s passionate. The guy deserves a medal (and beer) himself for keeping us in line. One of the upsides of camaraderie is improved mental health – the downside for our poor coach is that we giggle & hare about the track like naughty schoolkids.

Finally, and probably most importantly, the “Yes I Can” message from the advert sends a very clear message to local Athletics clubs that sport is sport able or disabled. Worthing Harriers is an athletics club, we just happen to be the wheelchair division. The club owns a set of chairs for us to use & as we get into the sport, then we can choose to buy our own chairs (and even then, the contacts through the club help with finding 2nd hand chairs or fundraising for custom built kit). The whole thing started with one child contacting the club and asking why he couldn’t train with them. 3 years on & we’re growing in numbers.

Many people working in sports fields need to hear the Yes I Can message. There is still a huge stereotype within society that disability means you just stop & if you don’t, then you must be faking it. So the more disability sports is shown on TV, the more normalised it becomes. If it’s normalised, then sports clubs will begin to assume that accessible clubs are just the norm and include them as standard… prices come down… they’re no longer superhumans because it’s normalised. Job done.

I made it sound so easy! 

So yes, I agree that the advert isn’t quite how I’d want to be portrayed, but it is playing on the vibe left after invictus to make able bodied people sit up and take notice that people with disabilities are actually out there doing more than spending their taxes (oh yes, I’ve heard that line). We’re working, we’re having families, we’re learning, we’re pushing ourselves to our mental & physical limits. Just. Like. You.

A Personal Best – #RaceForLife

This started as a Facebook post to tell people what hairbrained scheme I’d signed up for next, but I had way more to explain than I could stick on a simple post, so let me elaborate…

I’m not going to bang on about it, but if you fancy having a giggle at me looking like pink covered death, I’m running the Worthing Race for Life next Sunday. Ok, not exactly running, I’m propelling in a wheelchair. Taking part is not only to support Cancer Research UK, but is a middle finger up to the stereotype of being ill.

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This morning, my mum hesitantly passed on a message & conversation she’d had with a local physio who called on Friday. It seems that pain management had referred me to the home visit physio who called to book in to see me (yay!). My mum explained that I wasn’t able to speak to her because I was at work to which the response was “well if she’s healthy enough to work, why has she been referred to me?”. People deal with their disability & chronic pain in different ways. Some can’t work & I don’t judge them. I do work as a distraction technique which works because I love my job (despite what I tell you after 4 hours of year 8). It takes a team of people to get me there & my health suffers as a consequence of pushing too hard, but there is a twisted vision of disability in the UK right now:

If you’re disabled, you should work. “Don’t expect us to lift you out of poverty”
If you work, you can’t be disabled because you’re health enough to work.

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Shock horror! People with disabilities are all different & we cope by being adaptive and imaginative (Cue my speech to text / video marking system). So yeah, this race is a fair bit about pushing my limits. One thing I won’t do is slide into this victim / saviour complex that health professionals use where I am eternally grateful that they deemed to lay their hands on me 😒. So far GP & OT have been amazing. Other local team are patchy at best. They’ve accepted defeat with cardiology and sent me to UCLH, next is to get them to do the same for Rheumatology.

So why do I need physio if I’m well enough to work?

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I’ve been in pain a long time. Like PAIN pain? There were signs early on. I’m too stubborn to give in. Mr Geek deserves a medal. Research is important for all conditions.

Right now, I’m in a lot of pain. My hip subluxes daily, my pelvis dislocates as much, my knees & shoulders dislocate more often than I’d like, my back is a weird shape as the discs degenerate, my hands vary from ok to weird bendy claws. I sound like a bowl of rice crispies! I take painkillers, but my body is resistant to their effects, so the dosage I need makes my head fuzzy. The number of times my lower back & SI have moved has damaged the nerves to an extent where I can’t feel my feet anymore & on occasions go full ‘floppy leg’. Nerve function also interferes with continence. Combined with stretchy insides, this requires some adapting.

I’ve made peace with things falling apart & have created my own rehab program to maximise on the bits that do work in my upper body & core which involves daily squeezing of muscles to get blood flowing, massage from Mr Geek, & pushing myself to just bloody well get on with being an adult (between naps) and being involved in wheelchair racing. I still find it hilarious that I’d call it racing at the speed I go, but I’m working on stamina not speed. An average time for a new runner for a 5k is 25mins, I’m currently at 45mins (Although this is based on how far I’ve pushed as I’ve not gone full distance yet). What I need from this sport is the muscle function to stop my shoulders from popping out as my muscles now do much of the work that the ligaments & tendons should do. What I get as I push myself slowly & lopsidedly around a track in a funny looking chair is shouts of encouragement, smiles, normalcy, and fresh air, all of which do me the world of good. Today was hard & my right shoulder was not playing ball. I fought my way through training and subsequently created a mega pain flare which meant spending the evening in a morphine haze, strapped to a tens machine, and reduced to non-verbal communication via whimpers & tweeting. It was worth it though. It wanted me to stay in bed, but I didn’t.  I may have been in an awful pissy mood, but I got out there & put my big girl pants on. Who needs legs when you have a lightweight chair?

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Thirty years ago (age 6) I had clicky knees and my teacher called my mum into school as she was concerned about my hypochondria. I was always sporting a support bandage for a sprain, or crying during PE because my ankles / knees / hips hurt. I was tall & skinny and covered in bruises from falling, or kneeling, or who knows. I loved riding my bike, but 10 minutes into an off road ride I’d be exhausted & my knees would hurt. I was a weak child. I wet the bed – this was never to be discussed outside of the house (to my knowledge I don’t think we even told the dr). We tried everything, but it continued way past an age where you’d want to admit to it. (I’ve not even blogged about it before, but it’s time to put that piece of the puzzle into place).

Twenty years ago (age 16) I didn’t know that everyone else didn’t ache like hell by bedtime. I certainly knew that it wasn’t normal to find yourself desperate to pee and not hold it. I couldn’t stay awake as long as everyone else who could party all night. I was miserable. We were teenagers, so walked everywhere and my hips would scream & getting to hot would lead to being so dizzy I could hear my heartbeat whooping past my ears. Consequently, I was told it was in my head & given antidepressants. It became a self-fulfilling prophecy with me believing that the physical pain was in my head. For a number of years I self harmed through traditional means, risky behaviour, and poisonous relationships.

Ten years ago (Age 24) I had two tiny people who arrived early, a c-section scar that tore and damaged the nerves in my stomach, shins of a 10 year old (bruised) and was in a whole lot of pain with my back, hips & knees. I had migraines & after getting really run down with babies, university, & working evenings at the theatre, I caught viral meningitis. I used sticks & a basic folding wheelchair on and off when my back was particularly bad. Physio tried to reposition my spine & damaged my pelvis permanently. Each injury was looked at in isolation & we had no idea why I had such bad luck with my joints.

A year ago I was in daily pain, taking regular painkillers and using sticks to move around most days. I had no idea why I was in so much pain & my joints were so unstable. Picking up.my laptop bag, I could feel my elbow & wrist separating, so Mr Geek bought me a bag on wheels. I was exhausted & aside from a diagnosis of osteoarthritis, was seeking help to understand my body. My GP was reluctant, but gave in when I begged for something more than just opiates.

8 months ago, I could barely move out of my wheelchair or keep hold of a meal & had trouble swallowing. I lost weight & we wondered how bad this would get. I saw a specialist in connective tissue disorders who put all the puzzle pieces together with a diagnosis of Ehlers Danlos Syndrome type 3 (Hypermobility) with a type 1 crossover  (Classical). That diagnosis changed everything. Ok, it’s a diagnosis without a cure, but it’s one that explains to A&E why I’m there, it’s one that paved a way to pain management, it gave me a foundation to work from. The pain was real & now I knew why.

Now I’m going to propel myself 5k in a paralympic style racing chair (lent by the lovely Harriers Team). Mr Geek since we first met has been my relentless supporter, physio, carer, chef, comedian. He quite literally picks me up when I fall down. He has facilitated me fighting my own genetics more than any doctor or physio. He’s put a fair amount of his life on hold for me. This probably isn’t the time to get into why Mr Geek isn’t allowed to run alongside me (men get breast cancer too & yet are banned from this event)., but he’ll be there at the finish line as a real reason to make the full distance. I’m by no means better, but we have so much more of an understanding of my body & how it’s likely to function. Knowledge is power.

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So, I’m partially doing this as a thank you for believing that I can fight this in my own adapted way & also to support someone very special who’s kicking the big C in its balls. Cancer Research could save thousands of lives and countless more family & friends who are affected.
When the consultants finally get around to working together instead of intellectual willy waving, there is hope for a treatment for Ehlers-Danlos Syndrome. Until then, I shall wobble my way along the track supporting & representing those who can’t.

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When the seed falls hundreds of miles away from the tree

I thought I’d share a photo with you today of the tiny trainers we bought for Tinypants today.

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They are exceptionally garish. But she loves them.

Why are we buying trainers? Well, it seems that she’s been selected to take part in an indoor athletics competition to represent her school. And Tinypants is over the moon. She is beside herself about competing.

Now, from what I remember, athletics is running around in tiny gym knickers feeling sick from too much exercise and being shouted at by the PE teacher to “put some effort into it”. Sometimes, this running would be combined with jumping into a sandpit that contained god knows what and getting sand in those tiny knickers. Other times it would be combined with trying to break your shins on white gates that the sporty kids could leap over like graceful horses, leaving the rest of us to create colorful bruises on various bits of us. What I remember most was that sport was always combined with misery.

Summer was athletics and tiny gym knickers. Winter was hockey or netball where we were given extra warmth by covering the tiny knickers with a tiny kilt type skirt that was as thick as your average Kleenex. Netball meant standing around in the freezing cold hoping that the ball didn’t hit you in the face, where hockey was running away from the ball because being near it gave the sporty girls free reign to attack your ankles with wooden sticks.

This may explain my adult aversion to the gym. That isn’t to say I don’t exercise – we are weekly attendees at the family roller disco (90 minutes of skating is hard work!) and I am currently drying off from my Sunday night dip with Kitty at our deep water aerobics class (imagine combining aerobics with synchronized swimming in 12ft deep water, and our lack of any coordination. It is the single most hilarious thing we’ve ever done.). But since dislocating my pelvis anything which impacts in the slightest causes me the most bizarre pain and turns my toes numb! Sadly, this means that my chances of re-joining LSH at kickboxing or his new ninjutsu classes a out of the question, which is a shame as I quite liked having a 2 hour window each week when we could legitimately punch or kick each other in the head! *

I do like exercise, but on my own terms. Tinypants is a different story – traditional sports come naturally to her, and having spent the majority of her seven short years upside down in some form or another she has a cracking set of abs to show for it. I’m delighted that she loves sport, I don’t pretend to understand it, but I will support her as far as she wants to take it. Beanpole and I however were cut from the same cloth – we shall skate, swim and eat donuts.

I decided long ago, that it’s far better to be happy and have a bottom that dances to a different rhythm than my top half than to spend my life in the gym and eat nothing just to be miserable and obsess over my weight. I have boobs. These boobs require engineering miracles to ensure that they don’t smack me in the face if I try running (I did last year, and the undergarment required was nothing short of scaffolding). I may not pass the pencil test anymore, but I definitely pass the rolling pin test. As long as I don’t cross my personal upper threshold, I’m happy. I squidge a bit. I go out in places where I’d rather go in. But us frogs, we don’t waste our energy worrying about whether our value as a person goes down just because we ate some cake. We enjoy each mouthful of that cake being glad that we got to enjoy some cake.

A moment on the lips, a lifetime of enjoying cake for what it is, rather than what it makes us.

*NOTE- I ought to point out at this point that we DO NOT hit each other outside of these classes! Even in the classes, we were technically hitting punch pads.

Mum, your roller skating is epic! Oh yes.

Saturday has officially become family day. We will no longer spend the day deciding what to do, ending up actually spending half the day slobbing out then spending a fortune on soft play because of our lack of inspiration. We will have a plan. We will spend rime together. We will have fun!

It turns out that now we’ve swapped our gym membership from the posh club to the local council run one (half the price, but way more child orientated), we not only have unlimited swimming and the kids swimming lessons included and entrance to the local soft play, we also have the weekly roller disco included!

Now, in September I was confined to several square feet having been stuck on crutches for months after dislocating my pelvis and knackering several discs in my lower back. This has meant a long slow recovery to being able to do anything that verges on exciting and we started off slowly in January with a weekly swim on Saturday mornings. While tiny pants had a swimming lesson and beanpole went playing on the diving boards with the long suffering husband, I’ve been able to devote my time to treading water watching them all and hiding in the steam room when, after lessons finish they bring out the giant inflatable for the pool. (Total kudos to the swimming pool though for knowing how to keep hundreds of kids supremely happy for several hours)

Over the past few weeks, we’ve stepped this up a notch by taking the kids to the roller disco, which considering my advice to avoid any kind of impact sport perhaps is a little foolhardy, but as long as I don’t fall over, I’m good. Actually, I’m more than good. I’m having a total ball. This has in a few short weeks taken me right back to going to the roller discos at our assembly hall as a teenager and racing around on skates trying to impress the boys. And to top it off I’m doing something that has totally impressed the kids – they never knew mummy was a skater (I’ve not mentioned that I learnt to skate fast because as a drunk teenager, you don’t care when you fall over after getting air over the speed bumps in the road….).

But this time, we have the added bonus of it returning my legs back to me from the wibbley mess that they have become. In the past year, the lack of movement combined with some serious comfort eating have not done me any good. The gym is not my friend – I dislike the walking balls of testosterone that gaze lovingly at themselves (and each other?!) as they lift heavy things and make faces, I equally dislike the twiglet women who spend hours on the stepper and clearly spent their school life playing netball or athletics.

To add to the excitement this week, I bought my first pair of roller skates since I was 14. Not the roller blades or quad skates that the kids now have with big plastic buckles and shell, but bright blue retro 80s skates. Comfy skates with laces. Skates with bright yellow wheels. Just looking at them makes me happy.

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