I’m In The Paper! (some clarifications)

I’m currently recovering from my first ever political conference. It was inspiring, welcoming, eye-opening, frustrating and completely, utterly exhausting. On the second day, I went home for a nap between events and woke up the next day. I am bone tired, but my heart is full.

Before my nap-turned-marathon-sleep, I had been accompanying two of the most vital disability campaigners in the UK (Gail Ward of DPAC and John McArdle of Black Triangle) as they spoke to politicians and other activists about the devastation the disability community is currently undergoing. A journalist from the local paper, the Evening Express, briefly interviewed them and then took some details from me. That article appeared today, and I just wanted to offer a little background and clarification of ideas.

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Jennifer McKiernan wrote a powerful piece about our talk, and I am deeply grateful for the chance to reach a wider community. We desperately need people to understand what is happening, why it is so dangerous and why it has become so harmful that the UN is currently in the UK gathering evidence for the investigation into human rights abuses of disabled people by the UK government. It is the first time this provision has ever been activated, and it should be the front page of every newspaper and every commentary.

There are, of course, a few elements to my story that I did not convey perfectly because a short interview leading to a shortish article is not the greatest vehicle for complex ideas. I am not great at being concise, and do not have much experience speaking to journalists, so here are some of the things I wish I had remembered to say or wish I had been more clear about.

The first, and main, point is about the phrase “I had spent a long time trying to convince myself my life wasn’t ruined by my disability.” What I wish I had said is this: “It took me a long time to understand that my life was not ruined by my disability, but it had been irrevocably changed.” My life was not ruined. The essential problem with realising this was that society has a very clear definition of ‘worth’ and it is entirely tied up with what you can provide to the economy. By the time we reach adulthood, we are already instilled with a sense that your life is only valuable if you can work, if you can provide, if you are not a ‘burden’. We ask people ‘what do you do?’ when we meet them as if that is their defining characteristic.

I’ve spoken to a lot of disabled people and, especially among people who became disabled, as opposed to being born so, this is a common thread. Alongside learning how to navigate our new lives, with new medication, equipment, living situations, we also have to relearn how to see ourselves. It can take years, because it has taken years to build up these ideas. Possibly harder than the cocktail of drugs I needed to take, or learning how to read my pain and exhaustion levels, was learning that I have worth beyond the career I had built my life towards. I had to learn to see being supportive of my friends, being a source of comfort or protection to the people I loved, as being just as important as the career in Physics I had been looking forward to. We dismiss all of these elements of life as side interests, as add-ons to the real game, and we forget that these are the things which make our lives worth living, too. Other people find other routes back to self-worth – writing, activism, love – but each is a distraction from the central point: we have worth because we exist. We do not have to prove our right to exist, to take up space, because it is inherent. Society does a very good job of trying to convince us otherwise, but learning this is false is part of the journey when you are disabled.

So when I say I spent a lot of time trying to convince myself that my life wasn’t ruined, I mean that I was learning this the hard way. I had everything I thought defined me stripped away and learned that I was still here and I did not need to feel guilty for that. I was learning a new way to define worth and to define myself, and it was difficult but utterly essential.

Where this intersects with the article is that the WCA is the sharp-edged avatar of all those ideas about worth which you have just spent years unpicking and removing. You are forced back into a situation where you have to justify yourself and your life to people who think you can only possibly have a life worth living if you contribute economically, but who also believe that everyone is always trying to shirk this responsibility. They force you to justify yourself in their language all over again, to reframe your life on their terms, and you are confronted by just how far short of their ideal (and previously your own ideal) you fall. You may well have learned to eat softer food in smaller pieces because cutting up your food hurts your wrists and chewing hurts your jaw, and this is adaptation. They treat you as if you are lying and, in doing so, force you to explain in great detail how you can no longer eat or chew like a ‘normal’ person.

The problem with all of this is that the world is still set up only for non-disabled people. So while we may find myriad ways to adapt and live full, happy lives, it costs money and time and energy to access the rest of the world which is not adapted. Some aspects of what is believed to be a ‘normal life’ are not available to us even with this adaptation, but that is true of everyone, I think. The social security system with regards to disability support is supposed to help us access society where we can, and provide the assistance we need where we cannot. It is meant to level the playing field between us and able-bodied people, and support our new ways of living. Instead, it grinds your face into the fact that the world does not want you and so you are worthless to the world. If you cannot fit their idea of what value is, you are morally bereft, lying, or useless.

The other point to make is this: I went through the WCA in one of its very earliest formats, before it had really developed its sharp teeth, and it still made me suicidal. I was lucky enough to have all the support I needed from friends and family to get through it, including people to go to the meetings with me, to hold me in the waiting room as I sobbed hysterically after my tribunal, to get angry along with me when the huge pile of medical evidence was ignored in favour of an uneducated, compassionless, narrow view of disability. This was under Blair’s government, and before any of the devastating changes were made to eligibility criteria. I still had everything denied (with letters from my GP, Rheumatology consultant, psychiatrist, psychologist, carer and osteopath) and, though I technically won my appeal it wasn’t at the level I should have received and one of the people in the tribunal, even with the addition of the DWP’s own doctor’s multi-page report about the severity of my condition, still thought I was just outright lying.

I have benefitted, strangely, from the farce that the WCA has become. For the last five years, I have not had to go through the process because the staff at the DWP have been so consumed by all the appeals after the denial of new claims (most of which result in the decisions being overturned) that they made a nationwide decision to largely just rubber-stamp ongoing claim renewals in which the condition had not significantly changed. I fall into that category, so I have been free from the WCA itself, though not from the initial part of the process, which is also awful (and which I’m currently writing a longer, in depth article about entitled, ‘Let Me Tell You About The Brown Envelope’).

That will change this year, of course. DLA, which I rely on to exist, is being dismantled and replaced with a benefit which can only be described as utterly unfit for purpose. I think I am going to lose pretty much everything, which will also mean losing my blue badge, my bus pass, my access to education, and so my social life, my ability to get out of my home, and the health benefits of being able to go outside often. I am numb with fear about it, so I try not to think about it. There’s nothing I can do, other than speak to journalists and politicians and activists and keep on fighting for the right of disabled people to determine their own worth, their own place in the system, and their access to society.

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