Why I became voice for those who couldn’t speak up
Anna has been an incredible campaigner for Sense over the last year. Despite the difficulties that came with sharing her family’s story, she continued to push for better support for disabled households struggling under the high cost of living.
In January this year, I used a foodbank for the first time. The cost of energy had just been going up and up and up; it left me asking “Am I going to be able to heat the house and feed my kids?” I can’t remember ever experiencing uncertainty like that before.
My son, Charlie, has a genetic condition called SPG11. He needs a lot of assistance, like an electric wheelchair and hoist, and keeping him warm is vital as he can’t monitor his own body temperature. In the winter, the money I put on my prepayment meter is gone straight away.
My journey with Sense started last winter when I applied for their emergency grant. That support was such a massive help. I gave them feedback to say what a difference it had made and to share my family’s experience of the rising costs of living.
A voice for those who couldn’t speak up
Sense reached out to me. They wanted to see if I’d be up for speaking to some journalists about the impact of energy prices for households with additional needs. I wrote a blog called ‘How this Christmas will be different for my family’ and did interviews for various platforms and national TV.
It was a mixed experience for me. When you take this role, it does open you up to people being negative online, which I hadn’t been expecting. From my perspective, we were all in this together trying to get better help for our families, but not everyone understood.
I wanted to keep going. I knew I was the voice for so many people who didn’t have one. I always think, if it was Charlie on his own and he didn’t have us, what would he do.
“Anna invested such passion and expertise into our Cost of Living campaign and it’s been inspiring to see her become a fierce advocate for disabled families. She’s been a truly essential part of this work.”
Mark, from the Sense Media and Campaigns team
Sharing my story in parliament
Sense organised a roundtable at parliament. Richard Kramer was there, Sense CEO, with people from a few other organisations who, like me, were sharing their stories and experiences. We met with some key MPs from the Work and Pensions Select committee.
I emailed my local MP inviting them to the roundtable but they didn’t respond. I wish more MPs would engage with our stories, to understand where we’re failing to protect the most vulnerable people in our society.
At Westminster, I took a picture of Charlie with me so I could say “We’re not talking about figures and numbers here; we’re talking about real people. This is my son, but he could just as well be your son, and you’d want better for him.”
Seeing the best and worst side of people
I’m not the only person saying that I’m grateful for the help being given, but it’s not enough. Unfortunately, I felt that some of my media was interpreted as ‘Mum on benefits can’t afford Christmas’ and I was on the receiving end of online hate.
That was hard. I was seeing the worst side of people. But then, I also got to see the best in others. Sense was wonderful, and I had a lot of people from disabled households reaching out to say they’d also been struggling with the rising cost of living.
I was able to help them, directing them to the Citizens Advice, to local support groups and to foodbanks. When Charlie was diagnosed, I was just finishing off my social work degree. Obviously, I couldn’t go into a fulltime job once I started caring for Charlie, but this opportunity to support other people meant I felt connected to that ambition.
It’s been an absolute privilege to support Sense in this way. Even looking back to last Christmas, despite the difficulties of that time, what’s come out of it has been amazing.
If I can help one person not feel as alone as I did in my darkest moments, then it’s all been worthwhile.
The challenges ahead
I’m very nervous about the next winter. We’re lucky that I’ve been able to start building up credit for our heating, and that Charlie’s equipment isn’t lifesaving so we can scale back. But for many families, the struggle is going to be huge – and they can’t scale back those essential costs.
I want to keeping breaking down taboos and telling stories that people need to hear. A friend of mine wasn’t able to afford the cost running of vital equipment for her son during his last few weeks. They had to spend those days with him in a hospice instead of at home. We need more support.