Flex Appeal: Raising Disabled Kids
Flexible working is not just for parents, it’s for people. People with mental health issues, people with caring responsibilities, people living with disabilities; people wanting to live. In our Flex Appeal – the campaign to fight for effective flexible working for all – we speak to Penny Wincer, photographer and mother raising a neurodiverse family. Here she talks about the realities of working and raising a disabled child.
It’s Tuesday morning and I have a long To Do list. I’ve been up with my son since 3am as usual and like most exhausted parents, I can’t imagine getting through the day. After a strong coffee, I get started on some urgent deadline work, sending files to clients before I move onto my son’s admin. My son is not a newborn, he is disabled. This particular day includes chasing up a specialist dental hospital appointment (he can’t access a regular dentist), talking to the provider of his respite fund to check whether the (already approved) increase in respite hours has actually started as promised and then calling and checking in with CAMHS (Child and Adolescent Mental Health Service) on where he is on the waiting list. I then block out the next 30 mins for crying on my bed when they tell me it will be at least another 8 months (it’s already been 8) and there is nothing they can do to help us in the meantime.
After I have dried my tears and washed my face, I pick up my laptop and clear my head, walking the 45 mins to my office, making sure I am out of the house before the nanny arrives. This change over is essential if I am to get any work done past 3pm as my son would be too confused if I was shut away working in the house somewhere. So I finish the day in my co-working space, retouching a job I shot the previous week, before heading home to relieve the nanny and start the long bedtime routine with the kids. (Alone, I’m also a single parent).
Not all my work days look like this. As a photographer some days I’m on location shooting and juggling trying to get my son calmly on his school bus before dashing off across town. Other days I’m in my office all day and squeezing in all the household errands that are typically left for weekends but that I can’t manage with my son in tow. It probably looks messy to someone who is used to their work days following set hours, commute and routine but I’m used to it and I love it. When I started freelancing in my early twenties, I knew that it would help me lead the life I wanted but I had no idea that it would be the thing that enabled me to work at all.
In 2018, only 3% of mothers with disabled children work full time and 84% do not work at all (as apposed to 39% of mothers with non-disabled children)*. The two main reasons for this is lack of flexibility from employers and lack of appropriate childcare. My son requires one-to-one care and cannot attend a mainstream after-school club or holiday club. He can go to the holiday club at his special school (for which we are incredibly fortunate to have) but only 2 days per week, only school hours and only 8 out of the 13 weeks of holidays per year. For most people these restrictions mean maintaining traditional 9-5 bums-on-seats employment is completely impossible.
This of course has a huge affect on the entire family. It is estimated that 40% of disabled children in the UK live in poverty* and lack of access to flexible work is said to be one of the contributing factors. It also costs approximately three times the amount of money to raise a disabled child than a typical child and many of us will be caring for our children’s needs indefinitely and not just during their early years.
While I’m grateful for and love my work as a freelance photographer, I largely owe the possibility of this to the fact I had my career long before I became a mother. Setting up a business or working freelance is not an option for every parent of a disabled child. Between juggling local authority transport to special schools and NHS appointments (neither of which we have any control over) as well as our need to carry out vast amounts of medical and educational admin, it is virtually impossible for parents to be in a full time job that requires you to be in an office during set hours.
At the moment the picture is fairly dire. 1 in 4 families with disabled children go without specialist equipment and adaptations and 1 in 6 regularly go without food*. But I truly believe businesses are missing out on a vast resource in this community. Never have I met a more efficient and passionate set of people as the ones I have met through my local support group. We are used to fighting bureaucracy, attending tribunals, writing letters of complaint, running on little sleep, learning to be a therapist/advocate/legal expert and finding alternatives when everyone tells us what we want is impossible. Who wouldn’t want someone like that on their team? And with increases access to flexible working, a whole generation of disabled children and their families could be raised above the poverty line. Surely it’s about considering the human nature of business? Not all humans work the same way – or, in my world, can work the same way.