In an industry where self employment is the norm, I had no qualms when I became a photographer 12 years ago. I imagined that it would be tricky but ultimately rewarding and that when the time came for me to have children, I could both work on my business and be around for them. What I hadn’t counted on was that this was going to become a necessary lifeline for me accessing any kind of work at all.

My oldest child is disabled and requires a high level of support all of the time. He attends a special school, is low verbal and is unable to access most activities other 7 year olds enjoy. Whilst he is joyful and funny and clever, he can also be unsafe and need a lot of help just to do simple tasks or to be in new places. The challenges this brings to our family is immense. The challenges this brings to my working life is even greater.

Most children his age are able to access a variety of childcare options, my son is not. On top of that, in the past year with his transition to a special school, I’ve spent hours attending meetings, on the phone and reading therapy reports. When your child’s only chance of getting into a school that can meet his needs rests on a single meeting, you have to be there, no matter what. The older my son gets the more complicated his care is becoming and the more flexibility and understanding I require from those around me. I’m lucky enough that with the help from the (very complicated and self-employment-unfriendly) tax credit system I can afford to pay a nanny to look after my children in our house, 3 days a week. Although this is far from perfect (getting an Ofsted registered nanny willing to work with a school aged child is far harder then you would imagine), it works for us and we manage OK.

But I am one of the lucky ones.

The challenges this brings to our family is immense. The challenges this brings to my working life is even greater.

According to the Papworth Trust, around 84% of mothers of disabled children do not work at all and only about 3% work full time[1]. The two biggest reasons for the staggering rate of under or unemployment in families like mine, are access to suitable or affordable care and lack of flexibility from employers. Given that 7% of children in the UK are disabled, this is a problem much larger then the lack of media coverage would lead you to believe.

What’s required is both flexibility and access to good quality childcare. Because both of these things are particularly difficult for parents of disabled children to get, the rate of poverty in families with disabilities is much higher then those without. The cost of raising a disabled child is also 3 times higher then raising a non disabled child[2]. Many parents who aren’t in work, would be if they could do so.

I’m amongst the most privileged of those mothers with disabled children. I already had a much loved freelance career before it became necessary that I worked this way. But should access to work only be for the privileged few? Becoming a mother to a disabled child has further opened my eyes to the importance of looking after the most vulnerable in our society and what better way to help the vulnerable then to allow their mothers to help themselves?

Being freelance is the only way I can juggle my responsibilities to my son, also meet my non disabled daughters needs and have anytime at all left to myself… But I should not be amongst the privileged few.

When I look at my work schedule on any given week, it would not look at all balanced. Some weeks I’m away shooting in other parts of the country, other weeks I’m often at the school gates and working at my kitchen table in between. But over the course of the year I have the ability to balance things out much more so then most people in traditional jobs. I take chunks of time off in the summer for instance when access to childcare is expensive. I can count on the fact that no one wants to shoot over the christmas holidays. The short dark days of January and February provide some down time, where I travel very little and I’m around a lot. So I load my work in to the times I know the demand will be high, the kids will be at school and my long days will disrupt their routine less.

Being freelance allows me to work around some of the childcare issues and also means I’m not at the mercy of limited holidays which, for families like mine, would be used up attending therapy appointments and SEN meetings as well as caring for our children. My kids now also attend two different schools which means different inset days, slightly different holidays and completely separate events for me to attend if I want to show my face at Christmas concerts, fundraisers and sports days.

Although it comes with it’s own set of difficulties (having to occasionally negotiate with the nanny to start work at 6am so I can drive to Somerset for a shoot for instance!), being freelance is the only way I can juggle my responsibilities to my son, also meet my non disabled daughters needs and have anytime at all left to myself (so I don’t go completely insane). But I should not be amongst the privileged few. All mothers who want to work, should be able to work to provide for their families, themselves and their future.

[1] Disability in the United Kingdom 2016 — Papworth Trust
[2] Equal Rights for Parents of Disabled Children — Carers UK

Photograph by Penelope Wincer.

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