Why we need to shout about improving the rights of parents with disabled children
Published: 6 Dec 2017
Sophie Walker is the leader of the Women’s Equality Party
When I became a mother I learned how little we value mothers.
When my child was diagnosed with autism I learned how little we value carers.
When I became a politician I learned how little trust there is that this can change.
It’s time to do things differently.
When I think about the days before we got my daughter’s diagnosis, what I remember most is the feeling of isolation, the burden of sole responsibility for finding the support she needed, and the panic that I could end up losing my job or having to reduce my work as a result.
It took us five years to get the diagnosis, which took an awful toll on both of us. My daughter was badly bullied for all of those five years, and I struggled to get her the support she needed. Not only did I have to educate myself about autism but I had to educate myself about the services that were supposed to help us – the school special educational needs department, the local authority’s children and young adults services; the NHS diagnostic process; the mental health, occupational therapy, educational psychology and countless other layers and layers of people that didn’t seem to be talking to one another. I often felt like the only link between them all, fraying and worn and desperate not to snap because then I’d have to start the whole process all over again.
‘The biggest shock of all’
The time it took to learn about all of this and to correspond with all those services and meet all of those people and push and pester and beg and cajole when we were sent back to waiting lists or other departments was considerable. It did not fit easily with the full-time work I needed to do to pay the bills. I used to read and make lists frantically on the tube on the way to and from work. I used to write lists on the back of my hand and half-way up my arm. I had to sneak off during my working day to take and make phone calls about getting appointments for her. I had to ask for permission to attend those appointments. I had to find time to attend those appointments and still get my work done and show I could still be a valuable member of the office team.
I set up a support group with some friends, for parents of girls with autism. The majority of the parents there had given up work because they couldn’t balance it with their ongoing duties as carers. And the majority of the parents that had done that were women. Many of them had been out of the workplace for years. Many of them had little hope of ever being able to return.
Because it’s not just about the pressure of balancing work while you get the diagnosis. The biggest shock of all was that post-diagnosis, there wasn’t much more help than before. It was still – and is still, every day – up to me to make sure that my daughter continues to have the support and help that she needs. That process of filling in forms, cajoling support services, pestering and monitoring is always, always there and ongoing. I am only able to work because I have a supportive partner who shares the load, and because we are privileged to be able to afford childcare, and lucky enough that we found a childminder who has experience of caring for children with special educational needs.
This puts me in a small – and very grateful – minority. And yet still, there are days when I am breathless and worn with the effort of keeping it all together. I am perpetually worried that it might all fall apart.
‘People who care have valuable skills’
We have to value the work that carers do. We have to invest in care. It’s not just the right thing to do, it’s the only financially responsible thing to do. Care is a vital motor for economic growth and productivity. People who care have valuable skills: empathy, patience, creativity. And when we talk about childcare we have to understand that includes the care of children with additional needs and disabilities. It is not good enough to expect parents to struggle alone for years. A government that cares about families must understand that an absence of services is hitting them hard, and hurting women disproportionately. Free, universal childcare relieves the pressure on overstretched families and gives everyone a stake in care.
We have to also rethink the way we work. Flexible working makes workplaces work better – it makes for a wider talent pool when we don’t push people out. Adjustment leave means people who need to step out can do so without hearing the sound of doors slamming forever behind them. Paid and equal paternity leave means men don’t have to be pushed out of their families as women are pushed out of work.
I’m glad to be working with Working Families to improve the rights of parents with disabled children. I shout every day about this; and when we shout together our voices are better heard. So shout with us – fill in this survey to tell us about your experience, join the movement and let’s build a better world.
Survey closes on 13 December.
We run the Waving not drowning network for parents of disabled children.