Personal Independence Payment (PIP) is a brilliant idea; disabled people receive some financial support to help cover the cost of the additional resources & services they need purely because of their disability. This helps them become independent & contribute to society, whether that be through education, work, volunteering, or some other means. Unfortunately, the way in which this idea has been put into practice is unreliable, highly demanding of disabled people, & at times, frankly barbaric.

The PIP application & review process is a gruelling one. The first step is to complete a hand-written paper form which could feasibly be used to bludgeon someone with. There are currently no online options. For those of us who struggle to read, or for those of us who struggle to hand-write for so long, this is really quite inaccessible. Recent editions of the form leave very little room to provide answers that adequately depict the complexity or variability of a condition. For example, when asked if I can cook a meal for myself, the answer is yes. What this doesn’t take into account is that I cannot cook when I get home from work due to fatigue (I basically flop from my wheelchair onto the sofa), but on a weekend when I have a little more time & energy, I might be able to cook a little. This also doesn’t capture the use of special lightweight, easy-to-grip utensils, nor the fact that I am by no means quick in the kitchen. The prospect of going out to buy ingredients, or to wash up afterwards, are for the purposes of the form not considered to be part of the cooking process.

You are then asked to provide supporting evidence of your condition, but are given very little indication as to what this means. Therefore, you have to hope that the substantial sum you gave the NHS to provide a piece of paper saying “this person is sick” but in medical jargon, is good enough for them. You also don’t get that sum reimbursed, and the evidence may be disregarded for some arbitrary and contrived reason beyond your control.

Once all of that has been done, usually within a very tight & unrealistic deadline which only adds to the pressure, the ordeal is sadly not over. The next step will be to attend a physical assessment, often in a highly inaccessible building, where in half-an-hour someone who has never met you will assess how disabled you are. For highly variable conditions like my own, this completely fails to capture the effects of the illness. The assessor will then write a report which gets sent to the Department of Work & Pensions, where someone who has never met you at all will look at all the paperwork & make a decision, often one that completely contradicts what evidence has been provided. I may have described in detail my difficulties with cooking, cleaning, and personal hygiene routines (I need a stool to sit on in the shower, and washing my hair is so energy-sapping it gets done once per week at best), yet each of these categories were assigned few, if any, of these arbitrary points. Indeed, at my last review, I very conveniently fell one arbitrary point short of receiving care support, despite the assessor who had seen me very clearly stating that care would be recommended. It was then that I had to make the decision as to whether or not I should appeal this decision.

To appeal the decision requires a lengthy process that essentially boils down to a court case, & is so gruelling I have simply never had the energy to do so, however much I felt the decision made to be inaccurate and unfair. Having an education or a job, or even going shopping, can and will be used against you and to undermine you in this setting, despite the very purpose of PIP being to render you independent. The system is quite simply destined to fail us from the very beginning.

Part 2 is available here.