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ok people it’s the last day you can register to vote so here’s a thread i’m tentatively titling: Why Don’t You Care About Disabled People? (Or, Why We Really Need To Get the Tories Out)

ok? ok, let’s go.
I know loads of us are disillusioned with politics in general. We’ve had election after referendum after election, too many new Prime Ministers and leadership contests to keep track of, and so many scandals that the word has lost all meaning.
All of this to say that if you’re fed up and planning on not voting because you just can’t stand the whole thing: I get it. I really do. But please, please get out and vote, because as a disabled person, this election is crucial for me and people like me.
it’s been difficult for everyone to keep track of every new thing the tories have ruined, because we live in a constant state of outrage, thanks to brexit and tr*mp and all kinds of infighting, but here’s a story about how impossible it is for disabled people to get help
so, in 2015 I started to get sick. I won’t bore you with the details, but by the end of 2016 I was functionally housebound, and not able to work.

I did, however, have savings, and I lived in a cheap shared house in Sheffield, so I lived on them for a long time.
Now, ordinarily I would say no disabled person owes you their medical history, but since I’m using myself as a case study, here’s an extract from my neurologists’s notes at the end of 2017, when I finally got *some* of my diagnoses Photo of neurologists letter listing diagnoses from chronic hemiplegic migraine, orthostatic headache, query postural orthostatic tachycardia syndrome and spontaneous intracranial hypotension, episodic ataxia variant, probable hypermobile ehler danlos syndrome, hyper extensible joints and chronic myalgia, chronic fatigue, orthostatic intolerance, hypermobility related gastro-intestinal dysfunction
so, armed with multiple diagnoses and now without any savings, in June 2018 I decided to try and apply for ESA.

with a letter like that from a neurologist it should have been easy, yes?

I applied, and filled out all the forms, and included the above letter from my neurologist along with letters from my GP and a signed doctor’s note saying they didn’t believe I was fit to work

(Exhibit B) A photo of a doctor’s note saying I am not fit to work
the result, was that it wasn’t enough, and I was invited to a fit to work assessment (please note here the date of October, after my forms were received at the beginning of August). That’s a 5 month gap between requesting the forms and the date of the assessment. Appointment date for fit to work assessment, 1:45pm on Friday 19th October 2018
Despite being mostly housebound I’d heard horror stories about people trying to get home visits, so I rested extensively and my partner drove me, and we got there on time. They were running 2 hours behind schedule. For someone mostly housebound, this is a problem.
But we’re there, so we wait. Eventually, I am called in to an appointment with a ‘trained healthcare professional’ - a physiotherapist.

The appointment lasts 20 minutes, and involves them asking me the same questions I’ve already answered on the form.
At the end of the appointment, they ask me if I can lift my hands above my head, turn my neck, and touch my toes (yes, yes, absolutely not!)

And then they say ‘ok, you should have my report in 6 weeks’.
6 weeks passes, and no report. it’s Christmas. I am not dealing with the DWP at Christmas. So in January, I call up.

They have no record of the report.
We call again. Nope. It’s vanished. They can see I went for the assessment, but they have no way of finding the report.

A week later I receive this letter anyway: Letter saying I’ve been refused ESA because I haven’t paid enough national insurance contributions
Important to note: I have not received any money from the DWP during this time, despite the phrasing of the letter.

At this point, I give up on my hoped for £78 a week. I have a little bit of freelance work coming in. Just enough to pay rent. I can’t face applying for PIP yet.
Fast forward to June 2019. My health is fluctuating and it’s currently in a downward spiral. Freelance work is getting a little beyond me. Outside of rent which I’m just about managing to pay, I’m wholly reliant on my partner.

It is time. I call to request the PIP forms.
After an hour and a half on the phone they agree to send them to me. Now, they are *meant* to send you the forms 2 weeks from the request. I got mine 6 weeks later, in August.
What a lot of people don’t know, is that you have to fill in the forms within 4 weeks of your request, or the DWP will cancel your claim.

now, for anyone with a chronic illness or disability, especially those who rely on carers or family to help, this is a *huge* access barrier
it’s definitely an access barrier when the DWP don’t send the forms on time. A week after I receive them, I get a letter saying I’ve missed the deadline, but the DWP in their unerring generosity (🤨) have granted me a 2 week extension.

With the help of my partner, I fill the damn things in, and this time I send the same letter from the neurologist, a letter from an immunologist with some new diagnoses (my body is a hellfire), and the usual letters from my GP.
Will it be enough?

OF COURSE NOT. After all, why take the word of specialists when you can send your disabled and sick to an untrained government assessor?

I have to go to another assessment. Photo of a letter showing an appointment for a PIP assessment scheduled Tuesday, 8th October, 2019
I am, by this point, angry, as well as thoroughly exhausted. I take my partner. We go to the assessment.

It lasts an hour this time, and the questions are much more extensive. We talk about multiple diagnoses. Date of diagnosis. Do I need help to bathe (yes), toilet (no)
How often to I leave the house? (On a bad week, not at all, a good week, once).

The assessor is friendly, personable. I am tentatively optimistic that she understands what I’m telling her.
2 weeks later, this arrives. Photo of a letter saying they can’t award me PIP
So I request the report.

And here’s where it gets weird.

Along with everything I’ve told her about my conditions, and all of the notes from medical professionals, there is one phrase under every section that has the power to render them null and void.
‘Despite her reported restrictions, I found no evidence that...’

when I told her I needed help bathing, she’s written that she disagrees because I could lift my arms.
When I’ve shown proof of systemic conditions and talked about how they make me chronically fatigued, she’s written that I ‘didn’t look tired’.
When I talk about passing out frequently due to orthostatic intolerance (noted by the neurologist), she’s written that in her opinion ‘it’s not likely to happen outside of the house’

Well, no, because I can’t go out.
AND YET, they scored me 0 points on mobility. And 2 points on daily living.

Housebound, with all that medical evidence, and with simply an hour’s assessment it can all be ignored.
So I’m doing mandatory reconsideration: that is, within 4 weeks of the decision, I can request a mandatory review and submit a statement in my defence. This is the text acknowledging it. Text from the DWP saying I’ve asked them to look at the PIP decision again, and it could take up to 10 weeks from 11th November
10 weeks from the 11th November is the end of January, after starting the application in June.

And if they refuse it, I will have to go to tribunal. How many more months? Years?
All of this to say, that the system is designed for people to give up: it is set up so that no one sick or disabled receives the support they are entitled to, and I am not an outlier.
more than 17,000 disabled people died between 2013 and early 2019, waiting to be approved for PIP. independent.co.uk/news/uk/home-n…
In some instances, that will have been by suicide. attempts by disabled claimants have more than doubled since the fit to work assessments were brought in, because the stress of this process, designed for people to fail, is too much independent.co.uk/news/uk/home-n…
But for many, it will have been simply because they were sick. And here's the thing: tens of thousands of disabled claimants, sick enough to die, but *not sick enough to get support from the government*. Found "fit to work" by the DWP when they were at death's door.
Dying in poverty, under untold amounts of stress, because this government have cut ESA and PIP by a staggering £5 BILLION during their term theguardian.com/politics/2018/…
Leading to the UN report that found the government's policy of austerity was an attack on disabled people's human rights. In any compassionate society, in one of the richest countries in the world, this should be enough to ensure the tories aren't elected independent.co.uk/news/uk/home-n…
Now, these are the facts as they stand, and this is why I will be voting Labour, the only party pledging to replace the DWP - a department set up to deny people help - with a department for social security designed to help people access the support they are entitled to
The party that will scrap Universal Credit, a system that is forcing even people in work into poverty. And the party that has pledged in their manifesto to scrap the Fit to Work assessments, and take medical evidence as the standard for support - as it should be.
So, if you're out there and you're thinking of not voting because "every party's as bad as each other", please, think again, and register to vote. You have until 11:59pm tonight #ForTheMany gov.uk/register-to-vo…
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