Disability Rights – The Climb #905

Sunday 15th August 2021

Most of my day was taken up by form filling.

A friend of mine’s PiP (disability payments) has come up for renewal. They told me that they had months to do it, which was just as well, as having done their PiP appeal a few years back… it was a harrowing process for anyone involved.

Except… they told me a few days ago that it was due this week. How you could misread something so important, I don’t know, but it has been mammoth piece of work today.

I spent 6 hours on it, just filling out the details to a dozen or so questions. They still need to photocopy a bunch of consultants’ letters and get it posted off today or first thing tomorrow.

I get that we only want those that need it to get payments for disability but to be honest, it’s a struggle for me (in essentially a carer’s role) to have the mental energy to do it. For those it effects, it must be infinitesimally more difficult.

I’m lucky in that my disabilities mean I can work. I have to make small adjustments to how I do so, but even then, you encounter people who lack the comprehension to understand. Rather than ask or try and increase their understanding, they’ll just suggest a remedy or other that they tried when they had something they consider similar, as if you’ve never thought or tried it before you realised things were more serious than just an ailment. Then you get the people who think that they know a better way for you to manage your condition. If you’ve gone to medical school, then I’ll listen to you. Otherwise, I’ll take things on advisement.

Having sat through the PiP Appeal process as an observer, I am stunned by just how much we criminalise the disabled. ‘They must be faking it’. ‘They obviously haven’t tried doing X or Y’, as if they somehow like their condition and are trying to find ways to use it to rob the state.

We’ve been sold stories of dole scroungers to believe that every disabled person is in on some con… when in truth their lives are ones of careful balance and painful mistakes.

And so we have to fill in huge great forms that are way beyond some disabled people’s capabilities. It wouldn’t be so bad, but you know these forms are designed to try and trick you. You have a variable condition where one day you’re able to do things, but then it wipes you out for the next week, and this will be used to say you can do things all the time.

I’m lucky in that my disability has never stopped me doing things… but I have to constantly work around it. The way I do so is a mix of medical advice, experimentation and tenacity. Most of mine is careful managing of nutrition and energy levels. You tell people that you need to do something a certain way (eat at a certain time and avoid certain foods) and instead of being accepted, it gets questioned and challenged.

Doing things like filling out these forms makes me so annoyed, because it’s no lie to say we are at war with the disabled… where the norm is to challenge rather than to accept, understand and help.

It means that instead of just filling out a form truthfully and honestly, you also have to second guess as to how the information you provide will be questioned and challenged.

It took me 6 hours yesterday, and even though it wasn’t about me, I was thoroughly drained by the end of it.