Looking Back: reflections on being the disabled child of a working mother

By Zara Todd

This is the first time I have ever been asked what it was like being the child of a working parent. I find that interesting because I have spent my entire life as a disabled person being asked questions about myself and my experience. At 28, more aspects of my life have been documented than the majority of people, but the fact that my mother worked has never really come up. I guess, up until this point, people have made the assumption that either my mother didn’t work (I’m from a single parent family) or that my mother’s working has had little effect on my life for good or ill.

Both of these assumptions are wrong. My mum worked full-time from when I was born until I was aged 10 or 11, at which point she took early retirement. While I’m pretty certain that having a disabled child encouraged my mother to retire early, I know that I wasn’t the sole factor in her retirement. Equally, I can’t say that having a working parent had little effect on who I am, what my childhood was like and my relationship with my mum because it has, both positively and negatively.

Having a working parent, regardless of whether you are disabled or not, has an impact because you have to adapt to a wider range of people and to change itself. In my case I was too young to remember when my mum went back to work. It was before my impairment was diagnosed. This is significant because I suspect my mother would have found it much more difficult to find childcare for me had my impairment been known. As it was, as I got older, the harder and harder it was to find childcare because the gap between myself and my non-disabled peers became increasingly significant. A two- or three-year-old using crawling as their major method of transportation is just about acceptable, but when you get to seven or eight people start to worry.

When I was little I had a childminder who I loved to bits and often accidentally called ‘mummy’ and while I can’t really remember much, I look back at that time positively. Unfortunately, between the ages of four and eight I can remember not being very happy that my mummy worked while a lot of the children around me got to spend a lot of time with their parents. I was certainly jealous that many of my classmates didn’t have to go to after-school clubs, work out who they were going to that afternoon or get shop bought cakes for bake sales.

While I had some bad experiences with nurseries and childcare, who were not careful with their charges and did not listen to information (I vividly remember being force-fed meat and fish at the age of four or five because childcare staff didn’t understand what a vegetarian was and thought that I was just being difficult), I also had some good times and remember how proud I was of my mum whenever someone asked me what she did for a living. I don’t feel like I missed out massively because my mum worked but I do sometimes wonder whether my mother feels like she missed out on a lot of my childhood.

I think growing up with a working parent has given me some great skills. I adapt very well to change and enjoy meeting new people. Being in environments where you come into contact with a diverse range of people helped me understand at a very young age that not everybody has the same values, expectations and experiences that my family does. I’d like to think that heavy exposure to new people as a young child has made me a pretty awesome judge of character, and growing up I rarely got homesick. Particularly as a disabled child having a working parent has meant that I had to develop at an early age the ability to explain my condition, what help I needed and what I could and couldn’t do. However, this has just prepared me for adult life where I spent a fair amount of my time having to give the same explanations.

One of the things I found hardest about being a disabled child of a working parent has definitely been seeing and hearing other people judge my mother for her decision to work when she had a ‘severely’ disabled child. My mum would have worked whether I was disabled or not. It was a necessity and a decision I am sure she spent a lot of time agonising over.

It saddens me that many people I’ve come across in my life have judged her for this decision, particularly because of my impairment. In a society which is trying to be inclusive and equal, systems, structures and people should be able to accommodate working parents with disabled children without it being necessary for a parent to give up work.

[This article first appeared in the Winter 2013/14 issue of waving not drowning, the Working Families newsletter for parents and carers of disabled children who work or wish to work, available here.]

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Pierced by the winged shaft of fate

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

On Monday, Working Families held its first ever policy conference, in Westminster.  More than 70 policy and legal specialists – and one Baroness – attended to hear two panel discussions about what future policy on work and families should look like.  And, for the first session, I joined what the conference chair, Guardian journalist Zoe Williams, generously described as a ‘Dream Team’ panel for manifesto writers.

After Alison Garnham of Child Poverty Action Group suggested that the next government needs to “commit to ending child poverty, stimulate maternal employment, restore Child Benefit, and fix Universal Credit”, Anand Shukla of the Family & Childcare Trust made a pitch for “more parental choice on childcare”.  And, noting the introduction of hefty, upfront tribunal fees in July 2013, Sally Brett of the TUC warned that “we have to make sure we’re not just talking about paper rights”.

Laura Dewar of Single Parent Action Network called for more government action to tackle the “lack of access to flexible working at job entry level and the dire shortage of quality part-time jobs”, which combine to deny many single parents any real chance of a good work-life balance.  And, after Kathy Jones of the Fatherhood Institute called for “father-inclusive practice” in all public services, I made my two-minute policy pitch on behalf of a group of parents that is consistently overlooked by policy makers: parents of disabled children.

For if achieving more than a barely tolerable work-life compromise is a serious challenge for many working parents – and it is – then it’s a challenge that parents of disabled children face in spades.  And, of course, some parents of a disabled child are also a single parent.  And some are themselves disabled.  My friend Angela is a disabled single parent of a disabled child, and when I’m struggling with my own work-life balance I try to remember how easy I have it compared to Angela.

The main point I sought to make to the conference is that (almost) nobody chooses to become the parent of a disabled child – it can happen to anyone, at any time.  One day you have a healthy, bubbly toddler – and the next day she is struck down by one of childhood’s rare but vicious illnesses, such as meningitis.  Or one day a doctor tells you the eccentric and sometimes challenging behaviour you’ve so far considered to be just your six-year-old’s attractively individual nature is in fact a clear sign of his autism.  Or one day your bright and engaging teenager is knocked off her bike by a truck, and never walks again.

Such tragic, unexpected things happen, every day of every week – and their shock can hit families with tremendous force.  Knocked off balance and having to learn a whole new language of medication, treatment and care, it can take time for families to make the adjustments that, in the long-run, will enable them to weather the storm that has broken over their heads.

So – in common with Sam Smethers of Grandparents Plus – my policy pitch to the conference was for a statutory right to a period of ‘adjustment leave’.  Perhaps combined with a phased return to the original – or even a new – work pattern, this leave could be unpaid, or better still could be paid at the same rate as maternity and paternity leave.  But either way it would enable parents and carers to adjust to their new life, and put long-term care in place, whilst having the financial security of a job to return to when a little further down the road.

Such adjustment leave could benefit not only working parents of a newly-disabled child, but anyone experiencing one of the various shocks that life deals out to many of us at some stage: a bereavement; the serious illness of a partner or child; relationship breakdown; or the sudden, unanticipated decline of an elderly parent.

The idea that disability is something that can and does happen to anyone having been my theme on Monday, last night I was gratified to find the very same point being made by Bill Shorten, leader of Australia’s Labor Party and Leader of the Opposition, at a Westminster reception held by law firm Slater & Gordon.  As minister for disabled people and children’s services in the government led by Kevin Rudd between 2007 and 2013, Shorten was primarily responsible for the creation of Australia’s National Disability Insurance Scheme.

And last night, Shorten articulated, more clearly and powerfully than I’ve known any British politician since the great Jack Ashley do, how disability is not something that happens to ‘others’ who can then be separated from the rest of society and forgotten.  Rather, we are all at risk of being pierced by “the winged shaft of fate”, at any time, and we should bear that in mind when designing legislative provisions and public services.