As part of an ongoing research project, we asked parents of disabled children to look back at their experiences of parenting a disabled child (see box). This led us to think about how parents/carers discover, in the early years, that their child is disabled, and what this means for them and the children.
INTERVIEWS
The discussions here are drawn from interviews with two mothers of disabled children.
- Gayle
Gayle is in her early forties and has one child, an 11-year-old son, Simon, who has been diagnosed with Asperger's Syndrome. Gayle works for the Home Office during term-time only. Both Gayle and her partner are able to work flexibly so that someone is always there to take Simon to school or to pick him up. Simon's father lives 200 miles away from the family and visits in the school holidays.
Simon is coming to the end of Year 6 at primary school. He moved from one mainstream primary to another because he was 'having difficulties' at school, but Gayle says he has been 'treated as a naughty boy' at both schools.
- Shelley
Shelley is in her early fifties and has a 16-year-old daughter, Chloe, who has been diagnosed with a rare genetic syndrome. Shelley has worked for a voluntary housing organisation in recent years, but since becoming unemployed she has returned to higher education and is taking a social work qualification. Shelley is married and also has a 13-year-old son.
Shelley fought for Chloe to attend mainstream school throughout her education and ended up going through the courts to achieve this. However, when Chloe was 16, there was no mainstream provision in school available in their city, so Chloe had to attend special school. This was also the time at which Chloe was given an additional diagnosis of autism, which was seen as helpful for getting her into the only special provision available, an autism special school.
EXPERIENCES
Gayle and Shelley had very different experiences of coming to realise that Simon and Chloe were 'disabled children'.
Shelley visited a paediatrician in the first few months of her daughter's life and was told that Chloe was 'globally developmentally delayed'.
Shelley said she didn't really understand the label Chloe was given and only really began to feel that her daughter was disabled when she attended a group of mothers that she had met through the National Childbirth Trust (NCT) while pregnant.
'We had friends from the NCT group who'd had babies at around the same time ... but that support became fairly useless fairly quickly, as it was obvious that their babies at a year were busy beginning to talk and walk and Chloe couldn't actually hold anything in her hands still. She still hadn't got the upper body strength to sit unaided, and was still being miserable and I was still being miserable!'
Shelley felt excluded and although she went to the meetings occasionally, she found 'all these people endlessly going on about how wonderful it was that their baby was doing X, Y and Z' depressing. Sadly, the experiences at the NCT group were more disabling for Chloe and Shelley than the diagnosis of developmental delay.
For Gayle, the process of discovering that Simon was disabled was much slower. Simon was a 'normal' baby. As a toddler he had one particular friend but didn't much like playing with other children and he liked a regular routine - bath, story, bed.
It was only when Simon went to nursery that things began to change. In the context of a busy nursery, he was seen as a 'naughty' boy. It was only when he was sent to an assessment centre that Gayle began to see him as different. She says, 'You know, when you go for an assessment and they ask you all these questions, it was only at that point that I thought, "Oh, okay, that's considered bizarre behaviour". I didn't realise that.'
By the age of seven, Simon had been described, in turn, as 'normal', 'naughty', 'having ADHD' and latterly as having 'Asperger Syndrome and dyspraxia'. Eventually, Simon was diagnosed with Asperger Syndrome.
When Gayle got this diagnosis, she immersed herself in the autism literature. Her son's frustration became an autistic 'meltdown', a good bedtime routine became part of a 'structured' approach and having fun on a bike became an example of physiotherapy to strengthen his 'core stability'. Having a 'sticky label' of autism hugely changed the way she understood her child.
SOME THOUGHTS
Clearly, medical professionals played a key role in determining the children's identities as 'disabled'. This reveals the continuing power of the medical model of disability in children and parents/carers' lives (see box). However, for Gayle and Shelley, their children were made different as much by their social interactions as by their medical diagnoses. For Shelley, the parent group was the place that Chloe became 'disabled' and for Gayle, it was not until Simon went to nursery that she saw Simon as different.
It is important to recognise that social interactions in the early years, as much as meetings with medical professionals, are significant encounters that shape parents' views of their children.
Many early years practitioners work with parents/carers who have similar stories to Shelley and Gayle. The challenge for practitioners, then, is to consider how these stories might be used to create enabling, rather than disabling, environments for them and the children they support in the early years.
- Dan Goodley is Professor of Psychology and Disability Studies and Katherine Runswick-Cole is a research associate at Manchester Metropolitan University
Does every child matter?
Our research project, 'Does Every Child Matter, post-Blair? The interconnections of disabled childhoods', began in September 2009 and will finish in August 2010.
Its overarching aim is to look at the impact of Every Child Matters (DfES, 2004) and Aiming High for Disabled Children: Better Support for Families (DoH, 2007) on disabled children. We want to explore how disabled children grow up and their experiences of schools, leisure, health and social care.
It is funded by the Economic and Social Research Council (RES-062-23-1138). For more information visit: www.rihsc.mmu.ac.uk/postblairproject.
Understanding Disability: Background
Disability is often understood as being a straightforward, personal issue: an individual disabled person has a physical or cognitive problem. The response from parents/carers and professionals has been to identify the problem early on and to solve it, usually through diagnosis, therapeutic interventions and, if at all possible, cure. This understanding of disability has been described as the medical or individual model of disability (Campbell and Oliver, 1994).
Over the past 30 years in Britain, disabled people, including activists and academics, have begun to challenge the medical model and formulate, instead, a social model.
This social model of disability suggests that it is not the disabled person that has the problem, but society, which is organised in ways that exclude or disable people with different bodies or minds.
People have begun to talk about 'disablism' in the same way as people use 'racism' or 'sexism' to describe the oppression of minority ethnic groups and women.
Professionals, including psychologists, psychiatrists and family doctors, are often consulted by parents of disabled children. Their judgements are usually offered as 'facts'. However, some psychologists, working within critical psychology, have challenged the 'truth' of psychology, arguing that it offers just one view of children and that this view represents white, western, middle-class, masculine values at the expense of others.
In our study, parents told us about finding out that their child was impaired. The ways we made sense of what they said were influenced by insights from the social model of disability and critical psychology.
