Although a disabled is a joy, a blessing, a gift, and above all still a child, navigating an ableist world when your child is disabled is exhausting, expensive, stressful and soul-destroying.
A year ago today, and a week earlier than most, we said goodbye to my daughter’s last birthday-party guest, made our last family trip to the supermarket, pulled all three children out of school, and started shielding. Thus began a year that passed in a flash; a year that lasted an age. A year that … Continue reading A year lost
Our guide on this journey-of-a-lifetime was a little boy...
We’re not asking to be first. We, of all people, know that the elderly, clinically vulnerable and healthcare workers must be the first priority. We’re not asking to be first. We’re just asking not to be last. We’re asking you to honour your promise.
As we emerge from covid’s shadow we will find that supporting the most vulnerable, marginalised, and discriminated against is a good place to start in tackling longer-standing but no less existential problems.
A few days before Christmas, I went as a parent helper with my daughter’s class to a carol service: shepherding seven-year-olds along frosty pavements, trying to keep their wiggly crocodile in line, shushing them as they waited excitedly in the pews. To be honest, it was the last thing I wanted to do when I … Continue reading Overwhelmed
At 4am this morning I was cleaning up shit. Because that's my job. (Except, as a carer it's a job I'm expected to to do for nothing. Nothing being very slightly less than the insulting carers' allowance that those who can't work alongside caring get. Which is slightly less again than the pitiful minimum wage … Continue reading Cleaning up shit
It’s that time of year again. The trees are shedding their golden leaves, the clocks have been put back, geese are flying south; the mornings are crisp and the evenings misty. Thoughts turn to Halloween, Bonfire Night, even, dare I say, Christmas … and the winter bugs have started circulating. Beautiful ... but a harbinger … Continue reading The winter dilemma
So, I realise I bang on about inclusion rather a lot. That makes me both a zealot, and a hypocrite, because my son attends a specialist provision rather than the local primary school that his sisters go to. There are several reasons Benjamin still attends the wonderful, well-equipped, superbly-staffed specialist provision at which he started … Continue reading Trailblazing
On the day that our lives were turned upside-down by an emergency 38-week scan, I remember begging the neurologist to put us in touch with other families with children like our as-yet unborn child. Some part of me knew – despite the medical predictions ("Your baby will never walk, or talk. He won’t be able … Continue reading Ignorance is bliss?