Trigger Warning: This article contains mentions of suicide, discussions of the benefits system and dehumanisation of disabled people.
Very few people have to beg for their lives.
And of those, how many have to beg every year to two years?
Disabled people in the UK largely live in enforced poverty. Be it because of unemployment – from bias at interview, zero protection from unfair dismissal, lack of adaptations from employers – to outright eugenicist government policy.
On top of a reduced capacity to earn money through safe and legal employment, being disabled costs on average over £500 extra a month. This can be due to prescriptions, a costly restrictive diet, extra time on every parking meter, fuel costs for a medication fridge, and other ways of paying out of pocket for daily adaptations.
Government welfare that claims to cover this disability tax as a lifeline for personal independence pays as little as £362 – £660 at the most – and is available to claim whether or not an individual is employed.
Let’s swing back to that welfare process.
Personal Independence Payment (PIP) demands that disabled people outline every life-limiting indignity as step one of applying. No longer is a diagnosis (hard enough as that is to secure!) sufficient proof of disability. No, we’ve got to answer exactly how our disabilities actually disable us.
Have you ever looked another adult in the eyes and explained in excruciating detail how many times you’ve shat yourself this week? And how far you can bend your arm back to wipe, on a good day?
Because this application is followed by an interview with non-specialists incentivised through rejection quotas to downplay the truth. Interviews where outsourced DWP representatives ask questions such as “when did you catch Down Syndrome?” and “why have you failed to kill yourself?” The subtext being that if you’re really disabled then you ought to off yourself: if you’re alive, then you’re lying.
This isn’t an appointment where you’ll at least be offered adapted cutlery or a bed aid in exchange for the humiliation and dehumanisation: this is a performance so that you’ll be allowed to eat next month.
On top of all this abuse, PIP is an indicator for other accommodations. Access to a blue badge can rely in some counties on recently scoring well at your disability assessment, and ESA (an out of work benefit exclusively for the sick and disabled) can be impacted by a poor PIP score (since having a high PIP Award can increase the income-related ESA you are entitled to.)
I am disabled.
I know from supporting others’ applications and horrific face-to-face assessments that I would score too few points to qualify for even one pound of a Personal Independent Payment. Yet, I require daily adaptations from my workplace to remain profitably functional (including an incredibly lenient sick-day policy) – on top of three pills a day, meals prepared for me, and plans to upgrade to a wheelchair.
I am also a writer. Mostly, as a way to cope with living life in the slow lane. And I know that most people don’t understand something until they see it. Until it happens in front of you – via the safety of art or with the trauma of reality – we’re all a little too preoccupied to care.
Minorities and activists both lament the fatigue from holding a potential ally’s hand as they fumble through their assumptions and partially realise that, actually, prejudice and discrimination are systemic.
Art can offload this one-to-one hand holding to something light, even enjoyable, and something that is easier to empathise with than painful truths. Potential allies can be proud of connecting the dots given to them in a movie – that maybe eugenics isn’t right – and pave the way to a genuine supporter of disabled rights.
On a personal note, writing a stage play on PIP forms and assessments seriously hurt to do. I’m not sure I would do it again, as this activism was not cathartic. Editing it, too, was painful, whether I could flinch by with tight-chested flashbacks or required a break to cry.
Scrounge is not a happy show. But maybe a necessary one: procuring allies to help us snatch back our rights. It is a painful read – about a disabled mother, her daughter, and a family friend-turned-assessor.
Yes, art – especially live theatre – is largely consumed by the most privileged in our society: the people with the spare energy and money to see an evening’s performance with well-timed lighting and adventurous set design. But who better to solicit as allies? With all due respect, theatre audiences have time to kill.
The dialogue is heavily inspired by the thoughtless things I’ve had said to me or I’ve read from nondisabled people about others. And although I knew it would elevate the piece, I personally hated even including any pro-PIP characters: but it was a necessary narrative thread for the non-disabled audience’s consumption of the show.
The human cost of PIP is immeasurable: outcomes invariably feature some kind of self-harm (like self-neglect), all the way up to suicide. Plus, the catch-22 of being disabled and in poverty can lead to further disability; through malnourishment, poor living conditions, and inadequate healthcare.
Art solicits allies – who ought to have been fighting for us from the beginning. I can offer a little bit of hand-holding. And hey, at the theatre – they even pay me for it.
The treatment of disabled people in this country infuriates me and terrifies me. And when I can, I write.
Scrounge is available to order from Waterstones now.
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