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. 

https://youtu.be/IocLkk3aYlk

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.

Electric Dreams

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I’m an 80s baby, and as such will always sing these words with a muffled hum for the rest of the lyrics and an image of the film playing in my head. But why the bog title? Well, Sunday night is brought to you courtesy of the TENS machine (again). Despite all attempts to have a restful day today after yesterday’s escapades, my left shoulder took offense and tried to leave home. It’s usually my right one that pops out, but there’s nothing like a surprise sublux to end your weekend. EDS likes to keep us on our toes. As is usual for recent weeks, dihydrocodeine has little to no effect above standard baseline pain, & oramorph is barely touching it. We tried massage to help bring down the muscle spasms that are creating almighty knots & the end effect of that was Mr Geek hurting his fingers. Ice would reduce the swelling, but make the muscle knots worse, & heat vice versa, so TENS is the next option in the toolkit.

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One pad on a bicep, one on tricep from the grey channel, then one along the shoulder tendon & one just inside the shoulder blade (where the knots are) for the white channel. The pain Management team have suggested a bespoke setting of 100hz frequency & 200uS pulse width for 90 minutes at a time. As a general rule, the following settings are worth having programmed into your machine (all using 170 – 200uS depending on what feels right for you):

80 to 120Hz-acute pain

35-50Hz-muscle stimulation

2 to 10Hz – chronic pain

I’m using the acute pain setting because I’m using it for breakthrough pain where I’ve reached a decent 8 on my pain scale. This is also known as the ‘Fuck me that hurts. Hand over the drugs.” pain stage. On a scale of 1-10 this renders me incapable of doing much else than asking Mr Geek to rub my [insert body part] and clock watching for dosage times. With a decent TENS session and break through drugs, I can usually bring the pain down by 2 levels. This means I’m currently sat at “Not sleeping, but at least I’m not screaming.” level. Don’t look for pain scale facial expressions here – 9 & 10 get scrunchy faces & farmyard noises. That’s it. I’m a bloody zen master at breathing away pain facially.

This is all very irritating after having such a positive day yesterday. To help strengthen my upper body, I’ve been training (and I use that word as loosely as my joints) with a local wheelchair racing club for a few weeks. I’m fully aware that my lower half is past the point of no return. I have little feeling left in my feet & the lady areas are steadily going numb (That’s a whole other post) – and yes, I’ve flagged this up with more doctors than you can shake a referral at, but the regular limb detachment has been prioritised. So, I’m determined not to allow my arms the same option of defeat as my legs, and as such am building up the muscles to do the work of the crapped out tendons & ligaments.
Cue me being lifted into a paralympic style racing chair twice per week, strapped in and pretending that this doesn’t hurt in the slightest.
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The coach is lovely & works on the basis that we know our bodies, so you go to your own comfort level & adapt the chair, pushing style, & seating position to however your body works. As it turns out, mine needs to lean forward to take the pressure off my back & put less pressure on my shoulders, so we’re tweaking the club’s chair that they’re letting me use each session to get it right. For me, pushing down on a flat surface with no inclines or cambers, means that I can self propel. My lower spine still shifts every session, my SI pops as I get out, my elbows still give out if I get pushing wrong & my shoulders will not accept arms lifting up or out, but I’m finding my style. It’s slow, it’s slightly wonky, but physio isn’t meant to be easy.

Pros:
– I’m building muscle on my arms & core
– I’m outside twice a week
– It’s social
– I have a whole hour where I don’t need help
– feeling of freedom. Like running.
– Massive aerobic high
– Long term – possibly improving POTS

Cons
– Extra bruising from wheel guards
– Pulled shoulders from pushing too hard too soon
– Pulled elbows as biceps get tighter
– skin worn off on fingers (forgot EDS skin & friction doesn’t mix well. Cure: cohesive bandage wrapped over gloves)
– Getting cold outside (Then cramp!)

Ultimately, if it allows me to maintain where I am right now without any more spirals down, I’ll be happy. This is the first on land exercise that hasn’t injured me substantially more! And Mrs Physio will be super impressed at my efforts to get off my arse… or at least get my arse moving.

So here’s to my favourite two pain relievers right now: adapted exercise & TENS.

Here’s another table of possible settings with some handy explanations for use from NaturesGate

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