Janet stands three paces away from me. She is “scrubbing up”, going through the procedure to protect me before assisting with my personal care. We both share a dubious humour and at bedtime, I will call out, “Get your sexy scrubs on, Jan!” But I am not in the hospital or a care institution. I am at home and Janet is my personal care assistant who works for me via social services funding, through the Direct Payments Scheme.
She’s chosen to come to work despite the risk to her. And perhaps to me, but as a disabled person needing live-in care, it’s a risk I have to take. Me and Jan, we’ve worked together for twenty years. Jan supported me when I travelled to New York to work. With her, I rode the Barcelona Metro, drank Guinness in Dublin and spewed into the gutter after smoking too much in an Amsterdam Coffee Shop.
She bathes, dresses and supports me in the toilet, wherever we travel. Now in lockdown, it’s a thirteen-day shift for Jan. I am in the highest risk category and have my NHS letter, and receive Coronavirus daily texts. Mostly the tone is to jolly me along; look out of the window, watch films, do Sudoku. Then, the sombre message: be prepared in case you need to go to hospital, get a single bag ready.
Janet delivers a staunch edict, “You are not going to hospital, Penny!”
Janet’s mask is one I had made by a local crafter. The latex gloves came from Poundland. Along with thousands of other disabled people on the Direct Payment Scheme I am one of the forgotten, myself and Jan likely at more risk because there has been nothing but a heavy silence from Adult Social Care. It’s local people in Hastings, where I live, that offer immediate and daily support. Mostly from friends, but not always, with strangers connecting through networks to track down latex gloves and sanitiser. Last week a call-out for eggs meant that I found myself with thirty-six – naturally I share them in an act of mutual aid.
I call social services, angry and distressed. Where is our PPE? Who supports those that self-manage their own care? Although I’ve done this for twenty-five years, these are extraordinary times. More guidance and accurate information is essential. Ironically, most of these calls conclude with me offering sympathy to those on duty at the Social Services call centre. No one knows anything concerning access to PPE for people in my situation – the clinically extremely vulnerable.
Two weeks later, there is still no word. Janet continues with the homemade mask, the Poundland gloves and the tricky business of speedy personal care. We sit down and watch the daily reports from the government, a new pastime that doesn’t tell us anything that useful. Occasionally we take a ‘health stroll’ to the seafront for an hour, where I feel a guilty sense of privilege to have so much fresh air and very few people.
In the end, me and Janet – and all of my personal assistants – do what we must, and thank the gods for our gallows humour.