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)


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 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?


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?


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.

An Open Letter To Iain Duncan Smith

Dear Mr Duncan Smith,

Whilst I am aware that it is not policy to comment on individual cases, I would very much like your personal opinion on one particular scenario. Mine. (Although there are many, many more like me and in far worse positions)

This is not one of your made up examples in a pamphlet. This is a real life human who despite having never met you, has been personally affected by your actions. Because of this single fact, I would be much obliged if you took the time to read this letter and empathise, not sympathise with the situation.

In your recent speech at the Conservative Party Conference you stated

We won’t lift you out of poverty by simply transferring taxpayers’ money to you. With our help, you’ll work your way out of poverty.

I do work. In fact I am clinging onto my career by my fingernails and not because I am not successful, but because of the physical limitations my body places on me. First and foremost I am both a mother and a Secondary School Teacher of Computer Science having come from a software development background and I love my job. Second to this, I have a genetic condition known as Ehlers-Danlos Syndrome. I do not expect you to know what this is, but in a nutshell this is a condition which means the collagen in any connective tissue in my body is altered making it more stretchy than it should be. This causes joint dislocations, gastric problems, heart rhythm problems to name but a few.

I now use a wheelchair on a daily basis to support my current injuries, manage pain & fatigue and prevent further injuries.

Let me introduce you to my legs.


On the right, I’d like to introduce you to Roboleg. This knee is inclined to overextend (bend backwards) or rotate and give way so a hinged brace holds it in place if I insist on walking with crutches rather than using the chair. On the left is my newly braced dislocated knee which threw it’s kneecap to the wind because I dared to turn right whilst walking with crutches.

That’s both legs. Are you still running the DWP at full capacity whilst your knees shout for attention? Good. Keep supporting yourself, because not working is just laziness on your part.

Did I mention that EDS means that any surgery that might help takes extra time to heal, or stitches may tear through my skin?

My legs are my visible part of my disability. Add to this disc degeneration in my spine, pelvic subluxations daily, shoulder & elbow subluxations when I pick up anything heavier than a book, hand and finger pain from minor joint subluxations and the occasional dislocation in my fingers which make manual writing nigh on impossible now (my handwriting in prep school was beautiful) and typing without wrist splints excruciating. It also means self-propelling my wheelchair hurts.

So, now it’s not just your legs, but all your joints. Are you still skipping to your office? If not, why not? After all, not working is just plain lazy. Get off your backside,  you won’t be getting any handouts.

And what about all this pain? I have a pill planner. Not because it looks pretty on my bedside table, but because I have so many and woe betide my pain levels if I forget one. We live in a country where I am lucky enough to have access to the NHS which provides me with the medication I need. For £100 per year, I can cover all of my prescriptions with my NHS loyalty card.

On a scale of 1-10, people describe a dislocation as an 8. I’m not happy about draining the NHS of painkillers, but with things popping out each day it’s a necessary evil. Aside from being a drain on the economy, these drugs also cause short term memory loss, hair loss, gastric issues and physical addiction. Combine this with the mental health aspect of going from a high achieving and active young mother of two to struggling with daily tasks both physically and sometimes mentally. It’s frustrating. It’s difficult not to be angry at the world sometimes.

So, you’re in pain, struggle with mobility and also suffer from side effects from your medication. But in order to be treated, you need to see doctors. So you must also attend medical appointments with various specialists who will dictate when these are (btw, that’s been 3 in the past 7 days all during office hours). How’s your job doing? Still sharp as a button? Or are you close to becoming a drain on the economy?

So, how with all of this am I personally still working? Because I love my job, but also because I don’t trust you to help. I finish most days in so much pain I’m physically unable to speak to my family. This is not a forever option. Something is eventually going to have to give. Is it worth this much pain and causing my condition to worsen because you “won’t lift you out of poverty by simply transferring taxpayers’ money to” me? I will of course discount that horrific amount of tax I’ve been paying every month for the past 20 years. Because those taxpayers (er.. me?) would clearly be appalled if they were paying national insurance and tax to support people who physically needed it. I’m sure they’re delighted about their money going towards the House of commons champagne bill. (I’m not a delighted taxpayer btw – it’s abhorrent).

Right now, I really could do with a bit of help with practical things like parking & adjusting my car to help get my chair in and out. However, I am so fearful of your PIP process that despite using a wheelchair and both legs in braces, I have not applied. Why? Because I can’t imagine your assessors accepting this as legitimate from the personal accounts that I have read. Sadly, without PIP, many other doors are closed : blue badge parking, disabled rail card, access to work, motability. All that help rides on an interview for a benefit that I don’t want. Why on earth not just allow a GP or medical professional to register you disabled?

So, here I am at a bit of a loss. If you were in my orthopaedic shoes Mr Duncan Smith, what would you do?

I fear however, that this will be a rhetorical question.


Owner of Roboleg