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


2 thoughts on “An Open Letter To Iain Duncan Smith

  1. This is a great post for explaining to people just how hard life with EDS can be!
    One point to note – a blue badge is possible without PIP, especially if you’re a wheelchair user and on long term high dose pain medication. It took a few tries and supplying a lot of supporting information prior to and at the walking assessment but I got a blue badge (and I don’t use a chair). Access to Work is possible as well, for mine I had a telephone interview and then my GP had to complete a form for them. I got a 3 year travel to work award.
    PIP application process is a b*** and a joke and I can understand not wanting to go through it, but you can access other help without it, it’s just (as you pointed out) very hard and you have to know and quote all the award guidelines when you apply.


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