In the latest issue of Enable, we welcome carer, campaigner, blogger and comedian Nicky Clark to the Enable team. Here, she takes the time to introduce herself and explain some of the challenges she’s faced over the last two decades of caring…
For the last 20 years I’ve been a carer, which is easy to write but much harder to explain.
Mum was diagnosed with Alzheimer’s and lived with the condition for a decade before she died at 77 in 2011. Both my daughters have autism, and my younger daughter is also learning disabled and has epilepsy. Those are their conditions, not who they are.
Saints and scroungers
People think they know what carers do and what they are, which is apparently dependent on your point of view. At one end of the scale a saint, and at the other a benefit-absorbing drain of precious resources. As is the case with all of us, whether our lives prompt a label or not, we are more and less than you may think.
Unless it’s your job, people don’t necessarily choose to be a carer; yet with an increasingly ageing population, an accident in life, an incident during birth, or an inherited set of genes, many of us will experience, either temporarily or permanently, the role of a lifetime.
Because being a carer is just that – an opportunity. It definitely doesn’t feel that way at times, or even most of the time. Exhaustion, frustration, economic poverty, social isolation and societal neglect will underline that point on any given day. And that’s on a good day when your challenges and responsibilities allow you a moment to notice that your role is taken for granted by decision makers and budget holders outside of an election year.
Bottom of the list
It’s ironic to me that multi-million pound salaries are paid to the unspeakable bankers who wrought the worst economic meltdown of the modern age, yet £170 monthly Carer’s Allowance for those who keep others alive is deemed equitable. Carers understand the list and our place on it, which is at the bottom.
Six years ago I set up my blog and from that, I was lucky to start writing regularly for The Guardian. I launched two national campaigns; one in 2008 promoting the overlooked disabled talent in the entertainment industry and in 2012 another national campaign highlighting the targeting of disabled people by some comedians.
Then in 2014 I started doing stand-up, talking about our life and demonstrating hopefully the humour inherent in being a carer. Because I’ve found, as a carer, laughing about everything is vital for survival – and it’s how you do it that counts.
Enable Magazine, Sep/Oct 2014