The point of extra-costs disability benefits is to meet some of the costs experienced by people with disability, in order to raise them financially to a closer footing with non-disabled people on an otherwise similar income. Presumably the same principle applies to independence, quality of life and day-to-day living: extra-costs benefits are supposed to help us to be more independent and engage more in social life on a closer footing with non-disabled people. Even the name of the current extra-costs benefit suggests that that is its purpose: it is a Payment made to individuals for their Personal use in increasing their Independence and participation in society (Personal Independence Payment).
Yet apparently not, for the very distinct impression that I got from my recent PIP appeal is that I am not allowed, nor should expect, a religious, community or family life until I have first carried out all personal and domestic tasks on my own. I may not receive money to pay for someone to help me out at home if I then frivolously use the freed-up energy (‘spoons’) in things like attending church, doing six hours of computer-based paid and unpaid work a week, and supporting my sister (who currently, due to pregnancy, is more disabled than me). I may not either meet my social needs nor contribute in any way to society until I can first manage my house and myself through personal effort. Perish the thought that society might actually enable a disabled person to work, whether through social care or PIP, let alone actually be part of their family or community.
Imagine if we still told women that they could not engage in paid work until they had first completed all domestic chores without the benefit of electric goods like washing machines, fridges, freezers and vacuum cleaners. Women must wash clothes by hand; wring them out by hand; beat the rugs and sweep the floors by hand; scrub the front doorstep daily and buy fresh produce every two or three days. Then, when they have been fiercely independent, they may try to go out to work – if they have any energy and time left. That’s what we’re doing to people with chronic illness who need help in their personal and domestic lives.
Having first proscribed my social life, the Tribunal then also wished to dictate to me how I exercise. According to them, the only exercise I am permitted to do is walking, because if I put my exercise-related energies into walking then I can be deemed ineligible for PIP on the basis of any upright activities like walking, washing or cooking – which incidentally are the only ones I qualify on because washing up, putting shopping away, actually going shopping on foot rather than on a mobility scooter or online, putting laundry out or away, ironing, tidying, cleaning, mowing the lawn, washing the windows and carrying out a minor household repair are all ignored under PIP.
The fact that walking is pretty much the worst form of exercise for people with Postural Tachycardia Syndrome (it combines an upright posture with insufficient muscular and cardiac involvement to adequately boost blood flow) is irrelevant. I shouldn’t be seeking to manage my health condition; I should be seeking to reduce my short-term need for help. If I do exercise suitable for my conditions then I can maintain my health and maybe even improve it; if I do unsuitable exercise that upsets more than it builds up my body, then I am going to make myself worse and need more help in the future.
But the Tribunal want me to walk, and only walk. They want me to invest everything I’ve got into washing and cooking and walking 50m in one go every day. If that leaves me with raging pain, struggling to eat because of nausea, unable to think clearly, craving sleep the whole day but unable to sleep because of the pain, then so be it. If it leaves me weaving and wobbling as I walk, weak and unbalanced; if I get vertigo every time I move my head or eyes; if every gland is swollen and sore and my whole body feels inflamed; if my throat is scratchy and my nose blocked and my eyes swollen and my mouth dry; if I rarely see anyone to speak to, can no longer work, have to give away my dog and am unable to g church – then none of this matters because I am fulfilling the twelve PIP activities and am not burdening the state with the outrageous demand that I might actually have a life worth living, that my pain might be a six not an eight out of ten, that I might be allowed to worship my God in the company of fellow worshippers, and maybe even contribute something to society through paid or unpaid work.
By telling us that we may not take part in any activity other than the twelve that PIP assesses, PIP is removing our personalities, independence and freedom to choose. We are forced to engage in activities that are bad for our physical health, at the cost of activity that is good for our physical health, mental health and the community.
Like women who wanted the vote, we are to be chastised, demeaned and even pitied but never enabled or encouraged.