When I say the cost of Neurodivergence(s) and Disability and the benefit system, I imagine for some of you spreadsheets and budgets come to mind. For others of us however it conjures up pain and fear and the unknown. I make no secret that I am Neurodivergent and Disabled, it would be silly of me to hide it when it is a core part of why I am good at my job. I have had a number of people ask me over the years why I don’t apply for PIP (Personal Independence Payment). The answer is really very simple and also deeply complex. I have sat with too many people I care about and eviscerated their sense of self in the name of supposed support. 

Behind every headline about the amount of budget spent on disability support, there is a person. It is also worth noting at this point that you are eligible for PIP regardless of whether you are working or not. And while we’re about it there is more to life than the pursuit of endless capitalist productivity that is sending us to climate change hell in a handcart. 

But I digress - as I was saying, there is a person. The system as it currently stands is made to dehumanise and disincentivise the people it allegedly supports. I could speak to facts and figures but that would further remove the human being at the heart of the claim. So I want to talk about the impact of applying on an emotional level.    

I tell people when we sit together to fill in PIP forms: this is going to eviscerate you, we are going to talk about everything you cannot do, every pain, every trial, every tribulation. We talk over hours and days, and I watch them crumble in on themselves. Even when the forms are written it is only the start. Appeals take time and energy and fight that is sometimes more than people have in them - who knew disability was occasionally disabling? I have held friends after reading the outcomes of PIP as they cried floods of tears - “they told so many lies about me”.   

They wanted help, support, any goddamn thing to ameliorate the situation, what they got was a panopticon. The ever watchful eye of the state, judging their every move - what do you mean you can sometimes wash your own hair? Back to the grindstone with you.

What have we become, I ask each and every one of you dear readers. What have we become? The fear of giving one penny to an undeserving person (never met one yet by the way) is enough to turn the process of applying for simple support into a game of self-flagellation and degradation. There are many people holding the government and the media accountable for the deaths that this system has caused in the community, and I commend those who have fought and are fighting the attacks on PIP. More however are needed, the system as it stands is reprehensible - I urge each of you to keep pressuring the media to change the stigmatising and dangerous discourse and enact the same pressure on the government to remove the catch-22s and unnecessary barriers. 

The word out of Whitehall is that the benefit system needs to change. I agree it does - so make it easier to apply and maybe support people to live full and active lives. Maybe give people the resources they need. A person should not need to have their sense of self destroyed just to be able to afford to live in the world. I do not want to have to tell another person their only option for help in self-evisceration.