‘Busy Behaviour’ in the ‘Land of the Golden M’: Going Out with Learning Disabled Children in...

‘Busy Behaviour’ in the ‘Land of the Golden M’:Going Out with Learning Disabled Childrenin Public PlacesSara Ryan

School of Health and Social Studies, University of Warwick, Coventry, UK

Accepted for publication 4 November 2004

Background Research suggests that the inclusion of learn-

ing disabled people is contingent, unsatisfactory and

incomplete. This paper will take a step back and look at

the experiences of mothers of learning disabled children

in public places.

Methods Seventeen women have taken part in the small

scale qualitative study which used a combination of sin-

gle and group interviews to explore their experiences in

public places.

Findings Four areas have been identified as having an

impact upon the experiences of the mothers and chil-

dren in public places: the effects of the childrens’ learn-

ing impairments, structural constraints, the attitudes of

others and the attitudes of the mothers.

Conclusion The paper will conclude by asking if there is

a role for alternative primary communities for learning

disabled people and make suggestions for the develop-

ment of a more ‘learning disabled child-friendly’ envir-

onment.

Keywords: inclusion, learning disability, mothers, public

places

Research suggests that learning disabled people are

restricted in their experience of leisure pursuits which

are largely dominated by stay at home activities such as

watching the television (McConkey et al. 1981; Atkinson

1985; Saxby et al. 1986; Brown 1994; Beart et al. 2001).

Whilst this homebound thesis has been challenged by

more recent research the emphasis is still on the segre-

gated nature of leisure pursuits (Reynolds 2002). There

is, moreover, some debate over the place of non-main-

stream activities and lifestyles with a suggestion that

some of the arguments in favour of inclusion have ‘dis-

ablist’ or ethnocentric undertones by, for example, pla-

cing less value on association between learning disabled

people than on those between non-disabled and learning

disabled people (Cummins & Lau 2003). This paper will

try to further the debate on inclusion by taking a step

back and looking at the experiences of mothers of learn-

ing disabled children in public places. It will analyse the

impact of four influences upon their experiences of

going out in public places; the effects of the children’s

learning impairments, structural constraints, the atti-

tudes of others and the attitudes of the mothers.

Whilst, ostensibly, public spaces are open to all,

research has demonstrated that the rights to public spa-

ces are more apparent than real (Gardner 1991; Davis

et al. 2004). Access is a fundamental issue for disabled

people and despite legislation aimed at increasing the

accessibility of public places (Disability Discrimination

Act, 1995) barriers still exist to full participation. These

barriers can be physical, visual or symbolic and include

negative and hostile attitudes discouraging inclusion

(Prasad 2003).

Whilst there is not a great deal of literature focusing

upon public interactions between learning disabled and

non-disabled people, one study provides a graphic illus-

tration of the negativity learning disabled people can

attract in public places (Todd 2000). This study of staff

and learning disabled students’ trips to their local com-

munity found that the students were treated as undesir-

able outsiders within their local community and that,

while the staff provided a constraining and encouraging

influence at the same time, it was felt overall that they

placed the needs of the community over the needs of

the students.

By acting in this way the staff were avoiding any

attempt at ‘breaking through’ (Davis 1964) and, it could

be argued, the measures they undertook ran contrary

to a call for the achievement of a practical level of

Journal of Applied Research in Intellectual Disabilities 2005, 18, 65–74

� 2005 BILD Publications

acceptance (Gardner 1991). This raises the question of

what is a practical level of acceptance for learning dis-

abled people? One study, for example, focusing upon

the attitudes of local shop owners towards learning dis-

abled people found that they were tolerated and accep-

ted under specific conditions, such as small groups and a

high staff ratio (Saxby et al. 1986) (emphasis added).

The research within this area suggests that the inclu-

sion of learning disabled people within mainstream soci-

ety is contingent, unsatisfactory and incomplete and

there is a small thread within existing literature that

questions the status of mainstream life (Chappell 1994;

Cavet 1999; Cummins & Lau 2003). Cummins and Lau

suggest that the emphasis for many academics is mista-

kenly upon the time spent in the community rather than

upon the level of community connectedness people

experience and argue that ‘the effort to achieve physical

integration has been, and continues to be, largely mis-

placed.’ (p. 152).

The term inclusion is ambiguous and warrants further

unpicking. For example, to what extent should we consi-

der a learning disabled child who attends a local scout

group on a weekly basis included in her local commu-

nity when the child, outside of that activity, has no

other contact with non-disabled peers other than her

siblings? Conversely, if she attends an after-school club

at her special school and meets up with some of her

school peer group at weekends at a non-integrated or

segregated local activity centre, should she be consid-

ered excluded? As Swain & Cook (2001) point out in

their study of inclusion within education settings, the

process of non-inclusion in one group is one of inclusion

in another.

These are complex and problematic considerations,

which are complicated in this study by the focus of the

research upon the experiences of the mothers rather

than the children. Whilst Cummins and Lau use a sam-

ple of learning disabled adults living at home for their

study, suggesting that this is a context of non-coercion,

other studies have identified parents as being a restric-

tive influence on the social activities of their learning

disabled children (McEvoy et al. 1990).

Learning Disabled Children and PublicSpaces

There has been very little focus upon the experiences of

mothers, or parents, of disabled children in public

places within the literature, one exception being the

work of Voysey (1975). Voysey suggests that parents

develop a special competence and they are more able to

take the role of others and learn to ‘treat as routine,

occurrences which would embarrass, distress, anger or

disorientate ‘‘normal’’ members of society’ (p. 147).

Dingwall extends this by suggesting that

The everyday lives of these families are natural

breaching experiments which reveal the order that

would otherwise be taken for granted. The ways

in which they seek to restore that order tell

us about both its moral force and about the kinds

of accounts that are honoured in our society.

(Dingwall 1997, p. 60)

Like McEvoy et al., Voysey considers the implications

for the children of the parents’ actions, suggesting that

parents’ presentations of their children may be inappro-

priate. She suggests that the parents may continue to

manage the child’s personality and performance in more

spheres and for longer than non-disabled children

thereby constraining the development of the child’s

independence. This management of personality and per-

formance is, however, tempered by the responses of

others and the world can be seen as a dangerous place

by parents of learning disabled children (Barnes 1997).

Birenbaum makes a significant contribution to the

literature with his assertion that parents attempt to emu-

late a normal appearing round of family life (Birenbaum

1970, 1992). Mothers have little experience of disability

prior to the birth of a disabled child (Read 2000; Green

2003) and a semblance of normality is of considerable

importance to them (Nelson 2002). However, as Biren-

baum suggests, there comes a time at which this is no

longer possible. This emphasis upon ‘normality’ could

be interpreted as an indication of the ideological preju-

dice, which favours the mainstream over and above any

other community (Cummins & Lau 2003).

The Study

This paper is based on part of an on-going ESRC funded

doctoral research project which is looking at the experi-

ences of mothers of learning disabled children in public

places. The study is exploring how mothers negotiate

public encounters involving their children and others.

A qualitative methodology was selected to achieve

depth in the mothers’ accounts rather than produce a

broad overview of their patterns of going out. The aim

was to explore the meanings the mothers give to their

actions and to their perceptions of other peoples’

responses and reactions towards their children and

themselves when they are out in public.

66 Journal of Applied Research in Intellectual Disabilities

� 2005 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 18, 65–74

The data was collected using a combination of group

interviews and individual interviews, which were semi-

structured. Interviews were selected as the most appro-

priate to the task of getting close to the mothers lived

experience (Miller & Glassner 1997) and, whilst there is

considerable debate about the use of interviews within

social science research (Dingwall 1997; Silverman 2001;

Fontana & Frey 2003) it was felt, as Strong suggests, ‘the

best we can hope for is a plausible story’ (Strong 1979,

p. 250).

A combination of group and individual interviews

was selected to encourage the mothers to talk in some

detail about what could be mundane and taken for

granted experiences. It was hoped that discussing

their experiences with similar others would aid the

mothers to recall events or stimulate them to embel-

lish their accounts with more details in response to

other mothers’ contributions (Fontana & Frey 2003).

The intention was not to triangulate the data from

both types of interview but to achieve ontological

complementarity (Mason 2003, p. 35). Four group

interviews, three with two mothers and one with three

mothers present, were held and they lasted between

1.5 and 2.5 h. Eight individual interviews were con-

ducted all within the mothers’ homes which lasted

between 0.5 and 2 h.

An interview guide devised at the beginning of the

research, but revised and amended during the research

process, was used in both settings to prompt and

encourage the mothers to talk about their experiences. It

included questions such as ‘What sort of places do you

go to with your son?’ ‘Do you feel that people are aware

that your daughter has a learning disability?’ ‘Do you

ever explain to people that your son has a learning dis-

ability when you are out in public?’ It was used to

maintain some focus upon what the mothers discussed

but also allowed them to introduce topics or issues that

were significant to them.

The focus of the study was upon mothers of chil-

dren aged 5–16. It was felt that mothers of younger

children may not face the challenges of mothers of older

children as very young children are more tolerated in

public places (Cahill 1987, 1990). Moreover, learning

impairments are often not diagnosed until some time

after birth so it was also felt that the mothers of pre-

school children may be focused upon issues other than

going out in public places. The intention of the research

was to provide a flavour of the wider world rather than

a representative sample (Mason 2003) and the sample

size is based upon the number of mothers who could be

interviewed given time restrictions and upon the sample

size of existing small scale qualitative studies (cf. Miller

2000; Read 2000; Wilde 2003).

The data was transcribed in full and analysed using

the organisational (as opposed to analytical) support of

nvivo software. A second researcher independently

coded one of the interviews and the two interpretations

were compared and were found to be consistent. Origin-

ally 54 categories were identified and these were subse-

quently collapsed into five themes; strategies, visibility

of impairment, unconventional behaviour, sympathetic

others and inclusion. While these themes are, in many

respects, overlapping this paper will focus particularly

upon the latter. Extracts from the data are included in

the discussion and these were selected on the basis of

best illustrating the points and arguments being made.

Research Participants

The mothers were contacted via three non-mainstream

schools within a 15 mile radius of a city in the

Midlands. This route was taken as a convenient way of

reaching mothers whose children had moderate to

severe learning disabilities. The information letter

emphasised that the study would be focusing upon

mothers whose children’s learning impairments were

not immediately apparent. It is not possible to know the

number of ‘eligible’ children from the overall school

population as this criteria is, to a certain extent, subject-

ive. The letter was distributed to all the children in the

schools thus leaving the onus upon the mothers to inter-

pret whether or not their children fitted the criteria.

There is, therefore, a strong element of self-selection

within the sample and this may have led to a bias

towards mothers whose experiences in public places

were more remarkable than those who declined to take

part. This bias should not detract from the validity of

these mothers’ accounts but it does highlight the need

for further research within this area.

Out of a total population of 153 children across the

three schools, 23 mothers responded, and of these, three

took part in a pilot study and 14 took part in the main

study. Two of the remaining mothers did not fit the cri-

teria, three of them could not be contacted and one

woman dropped out before being interviewed. Three

further mothers were contacted using a snowball tech-

nique via the mothers in the sample.

Within the sample the women were aged between 24

and 50 and all but one was white. Eleven of the women

were married and six were single, separated or

divorced. Of the latter group, three fathers maintained

contact with their children. All of the women had

Journal of Applied Research in Intellectual Disabilities 67


between two and four children and two of the women

had two disabled children (one had a second younger

autistic son and the other a grown up physically

disabled daughter). Four of the women held graduate

qualifications, seven of the mothers worked part-time,

three worked full-time and seven were not in paid

employment. Four of the women were in receipt of

housing benefit and income support. The occupations of

the women who were in paid work included supermar-

ket cashier, healthcare professional, administrator, play-

group manager, charity co-ordinator, clergy woman and

party-plan organiser. Five mothers lived in a village

location, four in a dormitory town and eight in a city.

Three of the mothers were not car owners and a further

two were non-drivers but could go out in the car with

their partners in the evenings or weekends.

Of the children, there were eight girls aged between 5

and 8 and nine boys aged between 5 and 16. The lack of

any girls over the age of 8 is a further limitation within

the sample but also reflects the larger number of boys

than girls within the three school populations (Audit

Commission, 2002). Seven of the children had been diag-

nosed as autistic, seven of the children were labelled as

globally developmentally delayed and of these, two were

also diagnosed as being on the autistic spectrum, two

were diagnosed as having ADHD and one had epilepsy.

One child was diagnosed as having William’s Syndrome,

one with Fragile X Syndrome and one with Landau–Kleff-

ner Syndrome. All the children were physically mobile,

nine were non-verbal and all the children exhibited

unconventional and, sometimes, challenging behaviour.

Results

The data present a complex picture of the experiences of

the mothers who should not be viewed as a homogenous

group. All children like to do different things and par-

ents facilitate different activities and patterns of going

out depending on numerous factors, such as age, ethni-

city, class, time, financial constraints, employment com-

mitments, the ownership of a car, the structure of the

family and so on. The children’s learning impairments

also have different and varying manifestations and dif-

fering influences upon the going out patterns of the

women. For example, some mothers find it easier to go

to a small number of ‘tried and tested’ places while oth-

ers try to vary their routines to avoid the development of

obsessional behaviour. Whilst the sample is small and so

it is difficult to discern patterns, it is clear that the sup-

port, or lack of support, is a significant factor for all of

the mothers and those women without partners find it

particularly difficult to go out in public places.

One of the most significant findings of the study is that

none of the children attend any mainstream activities

such as after-school clubs, scout or guide groups, sports

activities, music lessons and holiday play-schemes. Their

only forays into mainstream life outside of school are

trips with their mothers (or fathers and occasionally res-

pite carers). Within the data four areas were identified as

influencing the extent to which the children were inclu-

ded within mainstream life; structural constraints, the

attitudes and responses of others, the attitudes of the

mothers and impairment effects. The author begins by

discussing the latter, which is not to lend it significance

over and above the other areas but in order to provide a

basis upon which to discuss the other areas.

Impairment Effects

The children have a range of behaviours which can make

going out problematic or challenging for the mothers and

family members. This behaviour is summed up by one

mother as ‘busy behaviour’, which includes her daughter

‘getting into everything’ and touching people inappropri-

ately. Other behaviours discussed by the mothers include

tantrums, a lack of awareness about danger, making loud

noises, running away, refusing to co-operate most com-

monly through ‘dead-weighting’ and making inappropri-

ate comments to people. A number of the children

cannot tolerate loud noises and so find trips to the cin-

ema, funfair, circus or theatre very difficult.

Em, we can’t go to really sort of noisy places. Ruth

doesn’t like noise. So she’s not good in the supermar-

ket. And we don’t go to the cinema. (Julia, interview)

In addition to the children finding some situations

intolerable, the mothers are also very aware of the

impact of their children’s behaviour on others present.

Jed hits people. We go to church and he’s grabbing

their shoulders. He has to say ‘hello’ 300 times. You

think of the other people, don’t you? Being aware

of them. (Sheila, group interview)

Some of the children have little or no interest in what

could be considered conventional family leisure pursuits

such as visiting zoos or going to the seaside and some

mothers describe how their children develop obsessive

behaviour which can create problems.



The thing we find with Julie is wherever we take

her more than two or three times she’ll build up a

routine. So if we went to Millets and went to the

garden centre we’d have to go to the garden centre

each time we go. Or we went to Thorpe to go to the

shoe shop so we’d always have to go to the shoe

shop. (Jenny, interview)

These impairment effects are not clear-cut in many

ways. It could be argued that it is the rigidity of the

rules governing appropriate behaviour in public places

that creates some of these difficulties rather than the act-

ual behaviour of the child. Many of the problems

experienced by the mothers are caused by the non-visi-

bility of their children’s impairment, which leads people

to judge their children’s behaviour by inappropriate

rules. The effect of this non-visibility is compounded by

the low level of tolerance extended to children in public

places in the UK; children are still very much expected

to be seen and not heard (Valentine 1996a,b).

Furthermore, the children’s behaviours, whilst unu-

sual or unconventional, tend not to be directed at any-

one and do not, therefore, constitute a threat to anyone.

One of the children will hit or kick people but the

remaining mothers feel that their children’s behaviour is

not problematic in itself. Indeed, there is a sense within

the data that some of the mothers redefine their own

ideas of what constitutes ‘normal’ behaviour and apply

this redefinition to the behaviour of their children in

public places;

So unless I think that what she’s done is actually

something vicious or naughty like if she thumped

another child which she doesn’t actually do, she’s

not very aggressive but if what I think she’s

doing is really within the normal bounds of aut-

ism as far as it can be rationalised at the moment

its happening I don’t think I apologise though I

might find the word sorry crops up. (Jenny,

interview)

Structural Constraints

Structural constraints create obstacles to going out and

these take the form of inflexible rules and regulations

and inaccessible environments for taking major buggies.

Whilst each mother differs in the kind of places she

finds accessible, there are some factors that contribute to

a ‘learning disabled child-friendly’ environment. These

include places that are secure, child-friendly, flexible,

welcoming and without large queues or with some

mechanism in place for the children to avoid large

queues. Some examples of actual places that are

identified as fitting these criteria are fast food restau-

rants such as McDonalds, segregated activities such as

activity centres for disabled children and certain theme

parks that provide passes exempting disabled children

from having to queue.

Fast food restaurants are popular and successful

because the food is served quickly, it can be eaten

without a knife and fork and they tend to be transient

places where people are always coming and going so

the mothers feel less on display. They are, moreover,

noisy places in which ‘busy behaviour’ is not going to

stand out so much.

Karen: Em, where else do we go? McDonalds.

They’re always as good as gold in McDonalds. I

must admit. James gets so excited when he sees the

Golden M.

Gail: We can’t say McDonalds. We have to say MD

or M but she’ll soon realise that M means McDon-

alds!

Karen: We actually call it the Land of the Golden

M! But it is the one place I can take them where

they’ll actually sit and eat. They don’t need a knife

and a fork I suppose. Whereas if I took them into a

pub that would turn into a food fight. (Group inter-

view)

The data suggest that problems arise as a result of

inflexible rules in some places. For example, a number

of the children do not have age appropriate behaviour

or interests and so enjoy going on bouncy castles or on

play equipment that is age-restrictive. Moreover, even if

the children are within the permitted age, the mothers

are not allowed to accompany them, thus making it

impossible for some children to be included. This can be

illustrated by Lucy’s comments about the places she can

take Christine:

There are not many places. She’d like to go to

more places like the ball pool and that but you

find that a lot of places you can’t go in with

them. Like when we went to Butlins you couldn’t

play in there with them. She’s not. I suppose,

she’s sort of a bit dyspraxic and she doesn’t climb

very well and sometimes she doesn’t hold on

very well so I’d worry about her letting go on

her own. A lot of places don’t let you in. When

people have let us in with her we’ve had a lovely

time. (Lucy, interview)



The data suggest that one of the biggest problems the

mothers’ face is being able to do their shopping and, on

the surface, this difficulty could be interpreted as being

a consequence of the children’s ‘busy behaviour.’ Of

course, shopping for many mothers with young children

can be problematic and, in recognition of this, there are

measures in place to facilitate it, such as trolleys for

babies and toddlers, special checkouts for parents and

reserved parking bays. There are disabled bays provi-

ded at most supermarkets (for those mothers with trans-

port and a disabled parking badge), however, the

provision of trolleys for disabled children is very patchy

and some mothers recount how they have been advised

to ring in advance to reserve one.

The data demonstrate how simple measures can facili-

tate shopping trips for families with learning disabled

children but also highlights how half measures can

increase the feeling of being different. One of the themes

emerging from the data is how much the mothers dis-

like being forced into the limelight during public inter-

actions and having to ring up in advance of a shopping

trip to reserve a trolley can be interpreted as an example

of how external factors can contribute towards this feel-

ing. The provision of more disabled trolleys and per-

haps some sort of staff awareness training could make

shopping trips much easier for these women. One reso-

lution of the difficulties associated with shopping could

be use of the internet to order supplies although this rai-

ses questions about restrictions and exclusion; not all

families have access to the internet and, furthermore,

how much would this reduce the children’s experiences

of public encounters?

The Attitudes and Responses of Others

The data suggest that negative attitudes and responses

by others have a significant influence upon the difficul-

ties the mothers and their children experience when

going out. There appears to be a tiered effect here,

which is related to the age of the child and the visibil-

ity of the learning impairment. The younger children

have less visible learning impairments which results in

their behaviour being judged by inappropriate rules;

they are perceived as naughty or disobedient children

and the mothers are held responsible. As the children

grow older, their learning impairment becomes more

visible and, rather than reducing the disapproval

experienced, this disapproval becomes directed towards

the unacceptability of the learning disabled child in

public places.

You do find, don’t you, that when they’re younger

people are more sympathetic and then as they get

older people are less tolerant and these children

become more odd to the public. Sometimes they

still look gorgeous but it may be their body lan-

guage, their gait, their social sort of body into,

what’s the word? Having to engage with their body

it actually then starts to go from being slight to

being extremely odd … (Clair, group interview)

The disapproval the mothers and their children

experience can be direct, such as comments and ‘tuts’ or

indirect, such as stares. The impact of this disapproval

can be substantial for the mothers in the study who

report high levels of stress, distress and weariness when

out in public with their children.

I’m fed up with people’s reactions. I’d like to go

out and be able to merge in with the crowd. I’m fed

up with it. I’m worn down by people and dealing

with their behaviour. (Jane, interview)

The mothers also describe feelings of indignation that

they and their children are subject to such scrutiny in

public places.

You feel why should you need to explain yourself –

people should just be more understanding. I mean if

you went out with perhaps an elderly person you

wouldn’t expect people to come up and start ques-

tioning you about them. You know I wouldn’t dream

of going up to somebody who was out with some-

body who was quite old and sort of saying ‘what’s

the matter with them?’ I mean why do you have to

justify yourself and why should I have to explain to

people I don’t know? (Sue, group interview)

The data suggest that the mothers experience positive

responses from the public as well as negative and these

are particularly memorable as the following example

illustrates:

So and yet equally you can meet some fantastic

people like on trips from Henfield to Dorking on

the little train and we got on one day and there

was a student on the train and he was just brilliant,

you know really chatty and related and involved

Martin and it was lovely to see that and its so nice

when somebody who really acknowledges your

child as a person and they don’t worry about the



fact that they are behaving differently but actually

quite accepting of it. (Debbie, group interview)

Mother’s Attitudes

The mothers play a major role in the going out experien-

ces of their children, as do most mothers. The mothers

decide where to go, when to go and take responsibility

for mediating and negotiating interactions on behalf of

their children. Whilst the mothers may feel strongly that

their children need to go out in public places, this does

not extend to encouraging their children to attend activ-

ities such as after school clubs or brownies. The reasons

for this are complex and multi-layered. The mothers of

younger children feel that their children are too vulner-

able to cope with such activities or that there is not the

support in place to enable it to be successful.

But she’s not boisterous so to be in a place in an

activity like that she won’t be able to cope really.

Until that opportunity starts occurring and I know

when she gets a bit older but … I don’t want to

push her because I don’t want to make her feel she

has to go because of us. (Sally, interview)

This justification could, of course, be interpreted as

over-protectiveness on the part of the mothers who are

reluctant to allow their children a measure of independ-

ence. Alternatively, it could be interpreted as a rational

and realistic response to a world, which has not been

welcoming or accepting of their children. The preceding

sections have illustrated how the mothers do not feel

that their children receive a ready understanding or

welcome and this, arguably, encourages them towards

protection rather than empowerment.

It is not, however, the case that the mothers actively

reduce their children’s contact with the outside world. On

the contrary, the mothers describe making persistent

efforts to maintain a public life for their children. Going

out to places, whether for practical reasons like shopping

or for more recreational purposes, is a part of normal,

everyday life and this is clearly important to the mothers.

There have been times when I’ve come back from

shopping trips in tears and thought I’m never doing

that again but you’ve got to for their sake. They’ve

got to get used to it. (Dawn, group interview)

I try not to avoid anything. You’ve got to lead as nor-

mal a life as possible. We just do it. If we’re going

out for a long time we take the pushchair so if she’s

drowsy after a seizure she just rides in her push-

chair. But on the whole we go wherever we want to,

do whatever we need to do. (Sian, interview)

I think it’s a huge lesson socially to be with main-

stream children. She doesn’t really spend any time

with anybody other than us or children at Beckwell

and half of her class are non-verbal. (Lucy, interview)

Three of the mothers also stress that they feel that, as

well as benefiting from interactions with non-disabled

people, their children have a contribution to make to

everyday life. For example,

To me, Jed, he’s actually opened up a completely

different way of looking at things. You know I

don’t walk into a supermarket anymore and think

‘oh, you’ve got to behave like this’. I think ‘Whey

hey, this is a great playground’. He’s taken away

inhibitions from me that I think we as a society

want to place on ourselves and we can’t break out

of them. And that’s why I want to continue to take

Jed out. I want him out there. I want him to be

seen. I want him to be heard. I want him to be

experienced … (Sheila, group interview)

The use of non-mainstream activities, clubs and holi-

day schemes appears to increase as the child grows

older and the data suggest that, whilst the mothers

don’t necessarily advocate a policy of non-inclusion,

their experiences with their children have gradually

edged them towards a path of exclusion. The combina-

tion of the child growing physically bigger and more

difficult to manage combined with the increasingly neg-

ative attitudes from the public make public outings

more problematic and challenging. At the same time,

the mothers appreciate the positive experience that seg-

regated activities offer their children as well as the feel-

ing of support and understanding they themselves

experience.

I think that this is part of the problem. I mean you

don’t always want to go somewhere specifically for

families with children with disabilities but some-

times just actually thinking about doing mainstream

activities is so hard that you just think it’s easier.

Everybody understands. You don’t have to explain

yourself … whereas certainly I’ve found since

Paul’s become an adolescent and teenager you do

meet quite a lot of anti-reaction from the general

public. (Sue, group interview)



Julie’s also been on holidays with the Newman

Trust which have been excellent and really have

taken her a stage further in her development –

being away with other disabled children. (Jenny,

interview)

It is clear that the issue of inclusion for the mothers is

complex and there is a strong sense within the data of

being pulled in two different directions, of wanting their

children to ‘fit in’ but, at the same time, realising that

mainstream life will not, or cannot, accommodate them.

As one mother remarked about her son, ‘he has a fan-

tastic ‘‘priorital’’ place in my family home but he

doesn’t actually have a place in society’ (Sheila, group

interview 1). She goes on to say:

There is nothing in him that can actually partici-

pate because there’s no language, there’s no ability

to play at all, there’s no sort of visual … That’s

one of the difficulties with the mainstream. Jed is

very integrated for who he is in the sense that

he’s forever with everybody else but it doesn’t

actually mean anything to who he is and what his

needs are. I still struggle with working out what

his needs are.

Sheila reflects upon her own role in Jed’s inclusion

and feels that other people should become involved in

taking Jed out, people who would not necessarily

impose the limitations upon his experiences that she

worries that she does. Indeed, for just under half of the

mothers in the sample, an extra pair of hands was

quoted as being a way of facilitating going out in public

and there is scope for the development (or extension) of

befriending schemes.

There is, however, a significant level of risk for the

mothers in trying to include their children in main-

stream activities. Lucy, for example, had a traumatic

experience taking her daughter to a local ballet class

and reflected afterwards that it changed her whole opin-

ion of inclusion;

I threw a real hissy fit after that – ‘‘oh why can’t

she be normal?’’ and I never ever feel like that but

it really got to me that day. And afterwards I kept

thinking ‘‘what have I done?’’ I thought that it

was really horrible of me but I think I really real-

ised that day that maybe I’ve always been up for

inclusion but maybe inclusion isn’t for Christine. It

was a bit of a rude awakening for me that day.

(Lucy, interview)

This discussion highlights the complexity surrounding

inclusion and, again, raises the question of how realistic

or desirable is inclusion in mainstream life for learning

disabled people? Clair, for example, described how her

non-disabled daughter had a disabled friend when she

was younger. However, this friendship was unsustaina-

ble over time as her daughter developed different ideas,

outlooks and levels of independence, which were not

matched by her friend. Clair’s family also worked hard

to encourage her son’s inclusion in a local hockey club.

Her husband became the coach to facilitate Joshua’s

acceptance within the club, however, even though he

belonged to the club for a few years, his actual playing

time in matches gradually decreased until he was barely

playing at all. Clair explained how, as the children

became older and more competitive it was no longer

feasible for him to play:

Some of the lads he did play with they were really

supportive of him, they were lovely really but then

of course they’re in a different world and Joshua

could never be in their world because he’s so differ-

ent. He’ll never be in the same world as my daugh-

ter and I think, I’d really love him to be out there

but it ain’t going happen. (Clair, interview group)

Conclusion

The small size of the sample and, in some respects, the

limited diversity of the sample, is acknowledged as a

limitation to the study, which could be addressed by

further research. There is scope to conduct longitudinal

research to trace the experiences of the mothers in pub-

lic places over time and a further area that warrants

exploration is the views of the children themselves

although recent research does address this (Murray

2002). Despite these limitations, the findings do offer a

contribution to the debate on inclusion.

The mothers and their children do not experience a

sense of community connectedness or belonging (Cum-

mins & Lau 2003) when they go out in public places.

On the contrary, they largely experience disapproval, a

lack of awareness and understanding and very little

support. This paper has presented an analysis of four

areas that contribute towards these experiences which

are, to some extent, overlapping and shifting. The

experiences of these mothers suggest that any encour-

agement towards inclusion by policymakers should take

into account the impact, upon the mother and the child,

of everyday experiences in public places. The influence

of what may seem like small, almost unremarkable,



occurrences in public, can contribute towards an inter-

pretation of the social world as an inhospitable place for

learning disabled children.

Structural constraints can add considerably to these

difficulties. A trip to the supermarket with a child who

makes unusual noises or is difficult to restrain is made

increasingly difficult by a lack of appropriate trolleys,

by the non-supportiveness of members of staff and by

the disapproval demonstrated by others present. Some

measures, such as passes enabling disabled children to

queue jump, work very well but these allowances do

not extend to other areas of daily life such as queuing in

the post office or allowing an adult to accompany a

learning disabled child in a soft play area.

One of the problems when discussing impairment

effects is the difficulty of disentangling impairment

effects from the rigidity of social norms of acceptable

behaviour. The mothers are aware that their children

may overstep the boundaries of acceptable public beha-

viour but they also interpret much of their children’s

behaviour as being ‘normal’ for them. As noted earlier,

going out in public for these mothers are rule-breaching

exercises and their experiences provide a clear demon-

stration of the moral force of social order. This argument

could be taken further, then, to suggest that the difficul-

ties experienced by the mothers and children in public

places are largely a result of the children’s non-adher-

ence to the rules of everyday life rather than a result of

the actual impairment of the children. However, this

underestimates the difficulty of going out with a child

who refuses to stand up in a shop or who constantly

shouts or screams; these are tangible difficulties which

can make going out problematic, particularly as the chil-

dren grow older.

The role the mothers’ play in encouraging their chil-

dren to go out is, again, a complicated area in which

different tensions are operating. Attempts to ‘main-

stream’ their children can be unsuccessful and can lead

to upset and rejection for the mothers and children as

well as some reluctance to attempt further inclusion.

There does appear to be some hesitation on the part of

some of the mothers to use segregated clubs and activit-

ies but this is countered by a realisation, as their chil-

dren grow older, that there is no real alternative.

Moreover, the mothers find that segregated communities

offer both their children and themselves support, aware-

ness and understanding.

One solution to these ambiguities may be the devel-

opment of valued alternative primary communities.

This is an acknowledgment of the conclusion of Cum-

mins and Lau; that a sense of community based on

social integration is not a realistic option for some

learning disabled people and, furthermore, the general

community may not be the primary community for

learning disabled people (Cummins & Lau 2003, p.

153) (emphasis added). However, this is not to excuse

or foreclose upon the development of a more diverse

and tolerant society in which unusual behaviours do

not invite such public sanctions, and in which there is

a greater understanding, awareness and acceptance of

difference.

Correspondence

Any correspondence should be directed to Sara Ryan,

3 Wharton Road, Headington, Oxford OX3 8AH, UK

(e-mail: [email protected]).

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