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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A constant compromise: life as the working parent of a disabled child

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

Previously on this blog, I have written about how (almost) no-one chooses to become the parent of a disabled child – serious illness or accident can strike any child, at any time.  And, when it does, the shock can hit families with tremendous force.

My son Sam was just five months old when, in December 1999, the invisible and relatively harmless bacteria he was carrying in his nose made the rare – and catastrophic – leap to the lining of his brain.  At any one time, millions of us carry Streptococcus pneumoniae in our noses.  We might get a sniffle, a sore throat, or a mild ear infection.  But Sam got pneumococcal meningitis.

Joanna and I twice took Sam to A&E, only to be reassured that it was just a virus, that we should carry on with the Calpol.  By the time we returned a third time, after yet another sleepless night, Sam was already gravely ill.

The three of us spent the next month in hospital – two traumatic, roller-coaster weeks in intensive care, then two weeks on an isolation ward.  Our jobs, and almost every other aspect of our normal lives, were simply tossed aside.  We slept beside Sam, in chairs or on the floor.  And we waited, whilst the NHS belatedly worked its magic.

Finally – the Millennium celebrations having passed us by – we brought Sam home: hemiplegic, epileptic and profoundly deaf.  Our lives were never ‘normal’ again.

For the next few months, Sam required constant care, involving several hospital or home sessions a week with doctors, physiotherapists, audiologists and other healthcare workers. My temporary work contract had run out whilst we were in hospital, so I became Sam’s carer.  Then, when I got a new job, Joanna went part-time.  We were fortunate: not only were our employers extremely tolerant of our frequent absences for hospital and other healthcare appointments, but we had substantial time support from friends and family, especially Sam’s two grandmothers.  Without their time commitment, we simply would not have coped.

It is at this stage that many working parents – and especially working mothers – drop out of work altogether to care for their newly disabled child.  Only 16 per cent of mothers of a disabled child are in work, compared to more than 60 per cent of mothers generally.  A legal right to paid or even unpaid ‘adjustment leave’ would enable many such parents to weather the storm that has broken over their heads, with the security of having a job to return to when life becomes a little easier.

Months passed, and there was little if any let up in the number of hospital and home healthcare visits.  Whilst the intensity of some of Sam’s provision, such as physiotherapy, gradually declined as his physical condition improved, Sam had now been referred to Great Ormond Street to receive a cochlear implant – essentially a bionic ear – and this required numerous appointments culminating in major surgery.  Both Joanna and I worked flexible and compressed hours, and prayed our jobs would continue – who else would want to employ such shirkers?

Years passed, Sam gained a sister, and our precarious work-life compromise continued.  For reasons the doctors never quite established, Sam was still not sleeping through the night – he would not do so until he was seven – and there were many times that sheer exhaustion led us both to consider giving up work. But we enjoyed our jobs, and valued the hours spent as a ‘normal’ adult. The time came when we realised we needed more support than our ageing mothers and other family could provide.

However, a place in a standard nursery was out of the question.  Apart from his physical and communication difficulties, Sam’s behaviour was challenging – he demanded constant attention, and frustration frequently led to melt-down.  Some nurseries would take Sam if we could pay for a one-to-one care assistant, but we simply couldn’t afford that.  And some nurseries didn’t even offer that option – they just said ‘no’. Two-thirds of families with disabled children pay a premium for their childcare, and for many others the lack of appropriate, affordable childcare creates an insurmountable barrier to remaining in, or returning to, the labour market.

Once again, we were fortunate. Through a friend, we found an angel of a childminder who could take both Sam and his sister, at the normal rates.  For the next few years, Reena became a fifth member of our family.

The next challenge was primary school.  Deafness being a low-incidence disability, there are very few mainstream schools with a hearing impaired unit (HIU), and the one we eventually chose as the most appropriate for Sam was on the far side of London.  The hour-long trek from home would be a pain (and it was), but the school’s HIU had a fantastic reputation and its unusually large size gave Sam a good peer group.  For the next six years, the HIU was our second home, and its teachers and therapists our second family.

By now it was abundantly clear that Sam will never be troubling the Nobel Prize Committee. But, thanks to the commitment and brilliance of our second family, he does have a future.  In 2010, the wonder that is the British education system presented us with just one practicable option for secondary school – a residential deaf school – and in September that year we did our best to hide our heartbreak as we deposited Sam at his new school-cum-home.

And that’s where we are today.  The weekly boarding has remoulded our family life, as well as breaking our hearts.  But both Joanna and I have remained in work over the past 14 years, and Sam seems happy, increasingly self-confident, and … well, a teenager.  Just this weekend, we had to shout at him to turn his music down – don’t you just hate that Gangnam Style?

And, for that as well as much else, we are grateful.

[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.]

Working Families & MumsNet Survey Report

By Avril Douglas

Recently, thanks to Mumsnet, Working Families ran a survey to gauge the extent of the challenges faced by working parents of disabled children as part of the Working On Campaign.

Respondents were asked to identify supportive employment practices, as well as to highlight challenges and restrictions.  Of the 222 respondents, 59% were working and 41% were not working.

Challenges cited by the parents were:  lack of flexible work opportunities (45.4%);  cost, availability and appropriateness of childcare (26.7%);  disjointed public services (26.7%); and transport problems (1.2%).

Comments from the parents include:

  • “need more flexible childcare when your child is sick”
  • “school should have more awareness of parents’ work commitments”
  • “convincing employers that flexible working could get more out of a hard-working employee who would go the extra mile”
  • “more opportunities for self-employment”
  • “an increase in the amount of money parents can earn when in receipt of carers’ allowance”
  • “hope the bill that is going through the House of Lords raising the extra hours of childcare from 15-25 hours becomes law very soon”

The respondents who were in employment were asked what was the most important factor keeping them in work.  Responses were

  • Understanding employer (21.2%)
  • Flexible working (36.5%)
  • Reliable care (14.6%)
  • Informal support network (3.7%)
  • Integrated services (4.4%)

Individuals gave positive examples of good practice, including: flexible hours; carers’ passport recognised;  empathetic employer;  set shifts;  part-time work; term time-only contract;  support from a trade union.

However, the reverse of these positive personal examples is that many working parents feel defeated and very frustrated.  Examples include the following comments:

  • “going to have to give up work. We’re both exhausted….we’ll struggle to survive on benefits”
  • “had to give up work because of lack of available childcare…. My son needs 2:1”
  • “I was told I could not be a supervisor and a parent of a disabled child. I was refused an application for flexible working.  I claimed for constructive dismissal and settled out of court.”

One respondent was a nurse who was made redundant because she needed school hours’ shifts during term time, but this was not available.

 “I have always worked hard…. It meant nothing…. I now have to work agency shifts with no holiday pay.  I’m just hanging on to my career with no training opportunities, no supervision and no job security.”

Another parent took no proper leave for two years:  “All leave was taken up with medical appointments.”

Whilst some progress is being made – as is borne out in the examples of good practice – there is clearly a long way to go in terms of equality of employment opportunity for working parents of disabled children.

To conclude, one parent suggests:

 “All employers should adhere to a flexible code of conduct on working hours for parents with caring responsibilities.  I suggest that this code of conduct should be devised by legislators.  At the moment it is something worse than a post code lottery.”

The Working On campaign aims:

  • to raise awareness of the difficulties faced by parents of disabled children who are seeking to combine work and care;
  • to encourage change in childcare provision, employment practices and support services, to enable more parents of disabled children to enter and to remain in work; and
  • to change attitudes, so that it is recognised that the parents of disabled children CAN work but need support to remain in employment.

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.

Welcome to our new campaign

Working Families supports a network of parents of disabled children who work, or wish to work.  Our campaign is to bring about the changes – from Government, employers, local authorities and service providers – to help them find and stay in work.  Unemployment and underemployment is high among these parents – but many want to work, and to use their skills and talents in the workplace alongside their caring responsibilities.

Are you a parent of a disabled child with a story to tell?  What helped you back to work?  What change do you need to improve your chances of employment?   Email us at elizabeth.gardiner@workingfamilies.org.uk