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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Should I Stay Or Should I Go?

I took the girls shopping yesterday for clothes. “Shop until you drop” consisted of 3 shops & Beanpole pushing my chair as I didn’t have the strength to self propel. And then a nice lady approached me…

I knew who she represented as she tried to give me a bunch of leaflets, and I was just at the right level of pain and tired to fire from both barrels.

She asked me to vote to leave the EU.

The original arguments for & against (before the politicians lost their heads and went apocalyptic)

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But I have grown up as a European Citizen and see myself primarily as European before British. On more than a number of occasions, I’ve been embarrassed to identify as British and when exercising my freedom of movement, do what I can to show that we’re not all arrogant arseholes. Whilst away, I have watched my children play happily alongside other children of French, Dutch, German, & Spanish origin with the language no barrier (the language of loom bands is universal) and have been proud to raise tiny humans who see other humans as just that no matter what colour they are or who they pray to, if they do at all.

As my personal experience of being a European Citizen has been overwhelmingly positive, I had some questions.

Question: If we leave, who guarantees my right not to be discriminated against because of my disability?

Her: Oh, well it then becomes up to us and our government wouldn’t allow it.

Cue raised eyebrows and me giving a few examples of why the current government probably needs the EU tapping it on the shoulder. Eg. In 2009, the then coalition government investigated scrapping the Equality Act which includes things like workplace tribunals insisting that other workers do not face the same or similar discrimination. The EU ensured that most of the act remained, but that particular part was indeed scrapped.

Her: Ah, but did you know that the day after we vote to remain the EU will legislate to privatise the NHS??!

I asked for evidence & she had none, so later I went looking on FullFacts.org for some unbiased research. Here’s what I found. So, yes. IF we allow privatisation of the NHS, and I’m looking square at you Cameron, it may be more expensive to reverse it. However, the bits that the Torys haven’t sold off would be protected. So, actually, the only people we have to fear are our own government who are hell bent on asset stripping everything they touch.

Question: What about the cost of leaving? The figures seem to show that we would pay more per head to remain in the single market?

Her: yes we would have to pay, but we would have control of our exports. Other countries will still buy from us – they’re not so vindictive that they would just stop.

How much would be offset by increased export in this per head figure?

Well we don’t have a figure as business changes, but look at all those French workers protesting and setting fires; we’re paying for them to refuse to work a decent days work. The French revolution happened for a reason…

What? That’s a bit of a leap! But back to the facts, how can you campaign on an unknown?

As I said, our exports will be our own so we can decide how it’s run without interference and they need us more than we need them…

My own research looks worrying. I’m looking for unbiased sources to get facts rather than posturing, so looked to the London School of Economics. Because, it doesn’t get more dry and maths based than accounting.

10% of our imports come from Europe. And we have a trade agreement in place for goods. 50% of our exports go to Europe, again with a trade agreement.
So what happens if we leave?
We have to negotiate new terms.
What are the new terms?
We won’t know until they’re negotiated.

…leaving us in financial limbo.

So what about individuals?

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What the chart is saying here is that best case, the average household will be worse off by £850 each year. Now using a mean average, that’s not every household hit, but the ones who feel it most tend to be those on the lower pay scales, and for some full time workers, that could equate to a months wages. That’s one hell of a hit for a best case scenario (with worst case losing over 2 months wages).

I want to be unbiased, but being presented with these raw figures is enough to sway me very much one way.

Question: If we leave, what happens to the human rights act?

Her: well we would have our own version of it. We created it after all.

She’s absolutely right there. The UK was at the forefront of creating the human rights act.

An interesting look which appears to give an unbiased before & after in the Telegraph writes

However any decision to withdraw from the Convention – a move the UK could make now – is likely to have a significant negative impact on the UK standing in Europe, the United Nations and the county’s moral authority around the world.

So the lady was correct, a Brexit doesn’t automatically mean we drop the convention. But, it does lean toward withdrawing as there is less pressure.

There have been a string of high profile cases where human rights have made things awkward, but there must be some good it does if we signed up?

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So, being selfish here:

Article 2: a right to life – no matter how crapped out I am, you can’t force me to die because I’m a burden.

Article 3: a right to not be treated in an inhumane or degrading way… and here I asked her about PIP. Is this humane?

Her: No, not at all. Those dreadful interviews are being carried out by a French company (she’s referring to ATOS here) and ruining disabled people’s lives.

I fear she rather missed the point…

Article 4: all I’m putting here is the Work schemes.

Article 7: benefits sanctions – a punishment, but we’re they breaking the law by missing an appointment by being at work/ at an interview / too sick to get up….

Article 8: my ISP holding my browser history. My personal messages to my husband no longer using end to end encryption…

Article 9 & 10: Facebook photos being used by DWP to “proove” people are well. Me being worried about blogging my experiences with DWP in case there were repercussions (a genuine fear of being rejected because I was openly negative about the process).

Considering the points above & the cuts in disability assistance made by this government and also when they were part of a coalition, it’s not a great surprise, but should be a great source of shame that the UK is the 1st first world country to be investigated by the United Nations for violations of human rights with regards to the treatment of people with disabilities.

Interestingly, we barely touched on immigration  (I had been keen to know what would happen to all our 5 million EU ex-pats), and we parted very on civil terms, agreeing to disagree.

The Leave vote continues to scare the living daylights out of me, but I appreciated the calm & dignified debate and if nothing else, that lady sparked a political flame that reignited my interest for actual facts rather than a gut feeling. I may not be voting her way, but I will vote with my head & heart.

Engage Brain Before Mouth

I spend a large portion of my life explaining to myself that teenagers lack the frontal cortex development to act like humans some days. They’re flighty, they struggle with self control, they often have no clue of the full impact of their actions. But in spite of, and in part because of these things,  I love these guys. However, yesterday 3 of my 14 yr olds really upset me. They had no idea, but nonetheless words were used that hit very much below the belt.

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They weren’t in fact referring to me, but to an injured friend by shouting a phrase from Little Britain (I’m sure the writers would be delighted that their characters are used to insult people) along with ‘cripple’ across the room at him. It was one of those moments that I look at a child and can’t work out if they’re being outrightly offensive to me or genuinely stupid. Neither could their classmates who spoke to me later to ask if I was ok (all together now: awwwwwww).

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So I devised a plan with their head of year.

Now normally, a student using abusive/bullying/discriminatory language would find themselves excluded and in much trouble. I asked if we could try something different and ask them to have lunch with me today. The head f year was totally up for this and sent the “invites”.

Lunchtime arrived and 2 of them shuffled into my classroom (the 3rd remains awol, but I’ll find him). I scooted over to them and explained that they had used language in my classroom that had upset me and that I found very hurtful. They drew a blank, but looked mortified. I gave them a few hints and it suddenly dawned on them – they’d been calling their friend a cripple in front of the teacher in a wheelchair. Bless them, they went grey. That gave me all I needed to know – I can read these kids like books 😉

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First off, I set their minds at rest that I wasn’t calling in the head, or their parents, but instead wanted them to understand why a simple word could be so important.

I’ve taught these guys for over a year now and they’ve seen me decline physically. Rather than asking for empathy (frontal cortex and all that), I gave them facts:

I don’t like being in a wheelchair.

It’s hard work and it makes simple things very difficult.

My condition will last forever, so I am finding it difficult to accept.

When you use words like that, it reminds me that I have to work extra hard to be treated equally.

I explained that sometimes I’m OK to joke about being ill, but it must be on my terms. Ask me for a race – that’s OK.  (Cue giggling), ask for a lift – that’s not going to happen, but it’s OK, joke about my terrible driving skills – that’s totally ok. But, use words that society uses to make disabled people “less” than others, then we’re going to fall out.

They were totally on side now and we talked about why it’s not appropriate anywhere,  not just in front of me. We even talked about invisible illness and how you’d never know that some people were suffering because a lot of illness, including the majority of mine happens on the inside, not the outside. It’s only visible now because of the braces and wheelchair.

And off they went.

No one felt bad. No voices were raised. There was no need for punishment and they took away that I’m a human, not just a teacher. Oh yeah, or a wheelchair user. This is totally my preferred method of parenting, and it works just as well with my kids at school.

It allowed me some introspection too. I never thought that would get to me. I’m proud of handling it calmly though.

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