Our disabled children, bottom of the pandemic pile
Yesterday we took the decision to take our daughter out of school. For many, this decision will now be taken for them as schools up and down the country wisely shun the Governments seemingly feckless advice and close their doors in the face of the Coronavirus. For many parents, this is a reality of choice now, but for us and thousands of other parents, this was a no-brainer when dealing with political silence and complex health needs.
Our daughter has a mix of different disabilities and like millions of high-risk disabled children up and down the country need to be under our watch. The decision to remove her was bought about by two factors. Firstly, all the Governments advice and decision making around Coronavirus seem to have sidestepped the country's disabled children. In all the text and bluster in the government's complex and ever-changing approach to this virus, our children and indeed ourselves as carers have become even more unacknowledged than before. There have been small lines of advice buried here and there, but the general consensus from our leadership is that disability is still way down on their radar. This, of course, made the second factor in our decision making more urgent; if the system wasn't providing support and care, then, as usual in the 21st century British politics, parents of disabled children would be forced to do it for themselves.
Since the decision to make Coronavirus a pandemic we, as parents of disabled children, have looked to the system for some hopeful acknowledgment and guidance. Indeed last Saturday I was given the chance via BBC Breakfast to ask Helen Whately, a minister in the department of health and social care; "If I succumb to this virus as my daughter's carer, who steps in instantly to do the routines around and for her?" The answer was met with all the usual political spin and hyperbole, morphed into the usual self-congratulatory response and non-answer. This is not new in political terms, but in times of crisis, and faced with me, a father whose child is dependant on them, surely political dialogue and management need to be honest and responsive like never before. Hers and her parties' non-response to my questioning was offensive to every disabled family and left me feeling enraged and irrelevant, my already fragile mental health crumbling like wet cake.
Other questions that time did not allow and probably would have been sidestepped anyway are being discussed by anxiety-ridden parents of disabled children everywhere, right now: How do I self insolate in the same house? How do we manage and indeed stay infection free? How do we maintain a flow of prescribed and shop-bought medication? Who cares for the carer? So far all unanswered, lost in the mire of supposed economic importance.
What Helen Whately and many others in power constantly fail to do is recognise our situations and families, understand our lives and that is the problem. There is an obvious political ignorance and want not to understand our complex family situations, especially in times of uncertainty like this. For instance, my care regime is now doubled as my wife is now also dependant on me. The irony of timing for her back to give up is not lost. The care question I put to Helen Whatley was one that is being echoed, right now, up and down the country. The rhetoric from the corridors of power has become panicked, to say the least. This virus has no prejudices and as I care for two, if I go down with it, the countries brutalized and butchered social care system cannot just simply step in. Carers are the human equivalent of the Madagascar Pochard, the world's rarest bird, the system gutted.
The Dunkirk spirited tone of getting friends and neighbours to step in to care for disabled families is a pipe dream in households like mine. My daughter requires highly complex intimate and experienced care and my wife needs help with her mobility. There is no way I would want to ask a neighbor etc with this. Any disabled child is rightly justified in who has access to their body. Only specialist trained professionals will do and rightly so.
What Coronavirus has sadly given parent carers and disabled children is seemingly a notice of our worth to society. From being blanked by the very MPs put in positions of trust, to failing to register on the radar of the policymakers. I am besieged by messages of palpable fear from fellow families all over the Uk, right now. Families like mine told me they are unable to access shops and when they do find it ransacked of the things they need, families in parallel situations of mental torture when their child coughs, sneezes or runs a temperature, families already in social isolation due to years of cruel austerity policy about to be isolated and apparently forgotten further. Mental health breeds in a lonely playground.
The only glimmer of light in these strange times in the community of parent carers and disabled people themselves. Never have I seen such shared love, comradeship, offers of support, shared essentials and advice. The policymakers may be getting on with things without us, the system may be leaving us to our own devices, but we will get through this, with each other in the disabled community. We have become our own government if you like, our own democracy, making our rules but based on humanity and care, and perhaps being with those who want to help, understand and advise is the better option.