I’m the mother to May, a severely disabled little girl, and I’m opening today’s post with a controversial statement:
Your prayers are not enough.
Thank you for praying for us. And for the 800,000 other families in the UK who are raising a child with disabilities.* It’s not that we don’t appreciate all the goodwill sent our way.
But what about a prayer combined with a lasagne? We could really use a lasagne. Or a few hours off on a Saturday so we could do our shopping. Or for you to sign a petition calling for the end of welfare cuts. Or for more shopping malls to install changing places alongside their disabled toilets.
Being able to change May’s nappy without lying her down on a pee-soaked floor – that would be helpful.
Or, as Barbara Ellen suggested today in her Observer column: “Perhaps what disabled children and their carers need is not the expected reservoir of genuine but toothless public sympathy; rather, it is the return of shock and anger.”
And where is that? When only 16% of mothers of disabled children can return to work and only 3% full-time, compared to 61% of mothers without disabled children: where is the shock? While at the same time, we witness the destruction of the welfare system that would support these full-time carers (and imagine how much unpaid, full-time carers save the country): where is the anger?
When there is no ring-fencing of public funds for disabled children or carers – and the government cuts drastically the money local councils are given, the result is going to be an end to services. The end of speech and language therapy. The end of equipment. The end of respite care. Where is the anger?
It is accepted these days for the country to take on the chin the idea that the government has to make “difficult decisions” in hard economic times. That “hard working families” deserve more.
A year ago, we were preparing to take May into the hospital for major surgery. In the months leading up to it, my husband and I had been lying with her all night long while she screamed in pain. Held her day and night as her exhaustion sparked a series of seizures.
“We never know. When she goes into these marathon sessions of pain and fevers and fits, I don’t even know for certain she will pull out again. Instead, I am literally inches from her while she screams every waking moment – now going on five days – and all the while the dishes pile up, cartons of Chinese food litter the kitchen and my schoolbooks sit in front of me never marked. In between worrying over how I will ever complete anything again because May refuses to let me put her down, I wonder if this day is going to be the day that she never comes back to us.”
I would argue no family works harder than those where one parent stays awake half the night, every night to make sure they don’t have a seizure. No family works harder than those getting by on half an income, because no workplace is able to accommodate the sudden and frequent trips to the hospital they have to make. No family works harder than those with parents struggling with fatigue, bad backs and aching arms lifting their child from seat to walker to wheelchair.
Hard working families do deserve more.
Thank you for your prayers. Thank you for your kind thoughts. But, maybe also start with a lasagne. And then, together, we can tackle the rest.
Where is the shock and anger? Comment to tell us what you think.
A huge thank you to everyone who has offered more in the past couple of months. Our campaign to get disabled trolleys for children in supermarkets continues to move forward and I’ll post later this week about the second version of the trolley that May is testing out for Sainsbury’s.
*Department for Work and Pensions (2013) Family resources survey: United Kingdom 2011/12 (PDF). Photo credits: Kevin Dunnett and Stacie Lewis, neither should be used without permission.