The opinions expressed in this article are that of the author and are not representative of the views of The Hysteria Collective as a whole.

Disability with Charlotte Paradise.

I feel blessed to live in a country where disability benefits are available but the truth is that they’re not available to everyone that needs them. We’re missing a huge trick if the system that’s supposed to be helping disabled people is actually hurting them.

Personal Independence Payment (PIP) is a UK welfare benefit designed to give financial aid to long-term disabled or chronically ill people for extra daily living costs. You’re eligible for PIP if you’re an adult with a physical or mental health condition that causes you difficulty with daily living (like preparing and eating food, dressing and engaging with others) and getting around. Now that we know what PIP is supposed to be and who it’s supposed to help, I’m going to launch into why I think they’re failing.

The PIP application process requires a (very long) initial form-that’s-actually-a-booklet and then either a face-to-face or telephone assessment (Covid depending). If your claim is rejected, you can appeal through a letter and, if they’re yet to change their mind, then issue an appeal to a tribunal. In January, I sent off my own initial application form for PIP. A few weeks ago, six months later, I had my telephone assessment. My personal experience applying for PIP is that it’s both mentally and physically exhausting (ironic considering my most debilitating symptom is fatigue) as well as (again, ironically) very, very ableist.

The application process revolves around applicants proving that they’re “disabled enough” to deserve the help. Any process that requires disabled people to reveal extremely private details in order to prove they merit access to support or quality of life is systematically ableist. The fact that the very thing that’s built to help disabled people actually harms them says a lot about how far behind we are in realising an accessible and inclusive society.

My telephone assessment was, essentially, just me repeating everything in my written application. It was an hour and 15 minutes of me explaining all the things I struggle with on my good days, average days and bad days in excruciating detail. 75 minutes of my toilet routine, the things I can’t do that I wish I could, the isolation I feel, and the long list of symptoms I have for each of my conditions. I did that fighting against all the ableist and gaslighting thoughts raging in my head – you don’t deserve help, you’re not important enough, I don’t believe you – that was encouraged by the questions that inherently looked for gaps in my story, to catch out the “scammer” in me, to assess if I’m struggling enough.

All of that was iced with the (rational) fear of rejection and the complete coldness on the other side of the phone. The nurse who conducted the assessment was like a robot. Actually, it would have been better for me if she was. How hard would it have been to show some kind of warmth, even in the hello or any response when I cried or couldn’t remember the word “saucepan”? Thoughts come at me like “well, it is a hard job having to listen to people’s most intimate and painful struggles all day”. Yet, wouldn’t that make you more compassionate?

Basically, the whole application process makes you feel like a number, an inconvenience and the assessor really fit the bill there. It doesn’t surprise me learning that the PIP application process is actually a points system. Standard daily living rates are given to applicants if they score between 8 and 10 points. Enhanced rates are awarded if your rate is 12 or above. You only automatically qualify for the enhanced rate if you’re terminally ill. It’s clear that quality of life is massively undervalued in the DWP’s PIP system.

Just 42% of new PIP claims are successful. It’s no wonder I’m not holding out for an acceptance letter. The rumour is that the DWP rejects such a high number of initial assessments to test how “desperate” the applicant is. Why put us through the exhausting power-play of appealing if you can already tell that we need the support? How do you think that affects us and potentially the mental health struggles that require us to apply for help with in the first place?

I understand that there needs to be an application process to “protect” the government against potential “fakers”. But, really how many people are pretending to be disabled to receive benefits? I’d imagine that the number is small enough to invalidate the inaccessible and cold hoops they’re asking us jump through just to survive in this world. I don’t know what the logistical and practical answers are to make the PIP application system less ableist but I do know that it’s not working as it is.

Image courtesy of Lil McDermaid.