Edges Magazine Issue 21: Lives Of Disabled Children

EDGES MAGAZINE Issue 21

April 2000

Lives of Disabled Children
Edges Magazine shares some the research taken from the Economic Research Council's Programme. The central theme of the Programme is to look at children as social actors- who make an active contribution to their families and communities and society. The Programme Director is Professor Alan Prout from the University of Stirling. He spoke at our Oxford conference.

Background

Existing research on disabled childhood has tended to ignore what disabled children say about their lives. The views of parents and professionals have predominated. Researchers have emphasised children's impairments, with a focus on education and service provision, rather than looking at the social experience of disabled children.

Recent legislation, such as the Children Act 1989 and the Children (Scotland) Act 1995,has highlighted the need to take into account children's views, and in particular has prioritised action to reduce disadvantage faced by disabled children.

This research used participant observation, unstructured interviews, and a variety of other qualitative methods to gather children's own views on life as a disabled child.The children set the agenda themselves: for example, few of them chose to talk about hospital or other medical experiences.We found a willingness to talk. and a desire to be heard.

What is a disabled child?

There is no such thing as 'a disabled child'.Disabled children are not a homogenous group, but include children with many different impairments,and even more diverse life experiences and outlooks As one girl said,"there's many different meanings of disability, in't there?"

Each child brought their own unique understanding to what it means to be disabled,although a common theme that children talked about was that being disabled meant that they could not get into buildings. Perhaps not surprisingly, many children did not identify with what is essentially a negative term.Some children denied that they were disabled,while attributing the label to others.Other children described how being disabled meant having a visible physical or cognitive impairment,while for others it was about not being able to do what you wanted to do. Those children who chose to identify with the label tended to have a positive reason for doing so , for example deaf children who share a common language.

Some children normalised their impairments,suggesting that "we're all disabled in some way",while others talked about the contingent nature of disability. It was particular situations and environments which created a problem for them,while in other contexts,the disability disappeared:"at the wheelchair basketball it's quite interesting,'cos you're not really disabled".

Most children were keen that disability should not be seen as their defining characteristic. They were children first:one child told us,"you should go beyond disability and just look at the person inside" while another said,"I just try to ignore it and join in".

Some children deployed their disability status strategically, in order to obtain benefits in the school environment.At times, children used the label ironically, for example, one boy said in a classroom:"Sir, sir, can we go to lunch earl y. 'cos we're disabled?"

The experience of school

A striking feature of the study was the high levels of surveillance of disabled children by adults.The vast majority of their days were spent in the company of adults and in social spaces controlled by adults.There were few opportunities for autonomy, and age-appropriate behaviour. The school day was dominated by interaction with adults,not with peers.The most prominent issue in children's account of schools concerned their relationships with specific adult support staff; for example, many of the children in mainstream schools had help from a special needs advisor (SNA).

Systems and structures which were designed to help with disability could have unintended consequences for the children's social life. For example, when a child had a support worker, this isolated them from their peer group. Even when the class teacher left the room,the support worker remained.As one girl said,"Like, the teacher goes out,and the SNA has to tell everyone to be quiet,they all blame it on me. I can't sit next to anyone 'cos of my SNA".Children sometimes minimised their difficulties,in order not to draw attention to themselves.Another girl said she preferred it when she did not have classroom support "because it's more . . . interesting.You can talk to your mates."

Similar situations occurred where groups of children travelled by taxi,or had a 'base' in a school.Children were thrown together, despite having nothing in common except shared impairment,and they were detached from the everyday environment of their non-disabled peers.Sometimes,children with a particular impairment were encouraged to sit together at the same table at dinner times.This created friendship groups between disabled children,and reinforced the tendency towards segregation and isolation from the mainstream.

Disability tended to become the dominant framework for explanation and provision for these children. Dimensions such as gender or ethnicity were often ignored. For example , it was common to find girls outnumbered by ten to one in special education classes.Almost all support staff were female , and disabled boys lacked male role models. In one case , a special unit for children with a particular impairment was located in an estate with a history of racial violence: black and Asian families were consequently reluctant to allow their children to use this facility .

Many adults were actively involved in categorising and labelling the children as different.The researchers were told things like "our children here are very different" and "these children do not understand social rules".Many teachers introduced children in terms of impairment:"Rory, come over here and tell these people why you are in the unit","This is David,he suffers from Asperger's". The institutionalisation of difference seemed to be an unconscious justification of the segregated practices found in many schools,including mainstream.However, there was a tension between this focus on difference , and the explicit aim of special education to normalise the behaviour of the children and help them assimilate .

Sometimes adults would talk about children in their presence as if they weren't there. As one boy said to us,"you may find it hard to believe, but even I ha ve things I would like to keep secret".In many cases,adults deployed subjective judgements of the capabilities of particular children,which they presented as objective measures.Again,one support worker told a researcher "they find it very difficult to make up their own minds. We ha ve to tell them what they want to do , help them decide."

Relating to other children

Perhaps unsurprisingly, children sometimes reproduced the same tendencies to labelling and construction of hierarchies that they heard from adults.Equally, adult systems played an important role in isolating and separating disabled children from non-disabled peers. For example , where disabled children were exempted from normal school requirements - such as turning up on time , or handing in home work - non-disabled children were acutely aware of this difference .

Although disabled children wanted to locate themselves within the world of children,there wer e various barriers to their full participation.These included physical barriers such as access to playgrounds and other facilities,and attitudinal barriers on the part of other children,who did not want to play with them.As one girl said,"They [non-disabled children] don't like talking to us. They don't want to be with us.So we keep ourselves to ourselves. "

Some of the children complained that it was difficult to maintain friendships with non-disabled schoolfriends,as they were unable to access areas such as fast food outlets and other child-centred spaces.They did not feel they could ask their friends to push their wheelchairs around all the time . As one child said,"after that [school] and in the holidays, you just stay at home at night . . . too difficult to do it and nowhere to go . . . and finding a friend is difficult".In some cases,attempts were made to integrate disabled children with their non-disabled peers,but these were not always successful:"I really lo ve basketball . . . and sometimes I play in a team with hearing and I get real disappointed, ha ve to be so patient because I ther e, wait for the ball to take goal and hearing just keep ball to themselves and ignore me ."

Sometimes,children travelled to schools at some distance from their homes,either because the y attended a special school,or because the only accessible mainstream school was not local.This meant that they had few friends in their home neighbourhood.Outside school,many children socialised exclusively with family members.Reliance on taxis and other special transport restricted disabled children from participation in extra-curricular activities. At the extreme , many children talked to us about their experiences of bullying.This in volved regular name-calling,and occasional physical violence . According to many respondents,bullying was the one thing that all disabled children had in common.Many children in special schools explained that bullying was the reason they had left the mainstream.However, the researchers also observed bullying in segregated settings.Disabled children were not invariably victims:some children wer e bullies themselves,while other children hit back when harassed by non-disabled peers.

Some children were well integrated with their peer group , had many friends,and experienced ordinary social relations.They reported that they were happy and successful. However, this was sometimes as a result of their having minimised their perceived impairment status and 'passing' as normal. Disabled girls reported that non-disabled girls were far less discriminatory than non-disabled boys.