Maternal Employment and Family Responsibilities: the Perspectives of Mothers of Children with...

Maternal Employment and FamilyResponsibilities: the Perspectives ofMothers of Children with IntellectualDisabilities

Julia Shearn and Stuart ToddWelsh Centre for Learning Disabilities, University of Wales College of Medicine,

Meridian Court, North Road, Cardiff CF14 3BG, UK

Paper accepted August 2000

Over recent decades, there has been a substantial increase in the proportion of women in the

workforce with dependent children. However, this trend is not evident for mothers of children

with disabilities. Their employment levels are greatly reduced. The present paper examines the

nature of the restrictions which affect the employment participation of these mothers and

explores the meaning work has for them. The data presented in this paper were derived from

qualitative interviews with 18 mothers of children with disabilities aged between 5 and 15

years. These mothers found employment dif®cult. They encountered unusual time demands,

and a lack of adequate and affordable child care. Furthermore, they felt that their employment

opportunities were restricted by attitudes prevalent in society concerning appropriate roles for

women, especially mothers of children with disabilities. The lack of opportunities to engage in

employment led, in varying degrees, to feelings of isolation, a lack of ful®lment and low self-

esteem. The mothers felt that they were on the periphery of society with little release from the

pressures of caring. Mothers who had part-time jobs often did poorly paid work of low status,

thereby encountering few opportunities to use their skills and abilities to the full. Those who

attempted a full-time job experienced stress from the dual demands of home and work, and

from a fear that they were failing as mothers. The present paper highlights areas which require

attention to improve the employment experience of these mothers.

Introduction

Becoming a mother decreases the likelihood of women working (Brannen et al. 1994),

but there have been radical changes in the relationship between motherhood and

employment over the past decade or so. The majority of mothers in the UK now work

(Bielby 1992; Brannen & Moss 1992; Newell 1993; Freedman et al. 1995; Scott et al. 1996;

Pascall 1997), more are returning to work sooner after pregnancy (McRae 1991) and an

increasing proportion are working full-time (Kiernan & Wicks 1990). While the social

pro®le and role of mothers have altered substantially, the lives of mothers of children

with disabilities appear to be increasingly discordant. Their employment levels have

remained substantially below those of other mothers (Bradshaw & Lawton 1978; Hirst

1985; Glendinning 1992; Gallimore et al. 1993; Beresford 1995; Shearn 1998a) and con-

tinue as such over the life course, or at least as long as their children live at home

(Glendinning 1992; Todd & Shearn 1996a; Todd & Jones 1999). As Glendinning (1992)

argued, mothers of disabled children are con®ned throughout their working lives to

Journal of Applied Research in Intellectual Disabilities 2000, 13, 109±131

= 2000 BILD Publications 109

the unsatisfactory employment conditions experienced by mothers of very young chil-

dren. For the overwhelming majority of mothers with disabled children, this situation

is undesirable and incompatible with their personal aspirations (Shearn 1998b), and

may be a signi®cant aspect of the `biographical disruption' and `identity threat' asso-

ciated with caring (Todd & Shearn 1996b; Chamberlayne & King 1997; Felce et al.

1998).

The present paper examines the attitudes towards and salience of employment for a

group of mothers of children with intellectual disabilities, their views on managing the

roles of mother and worker, and how support is used to combine these roles. The pre-

sent authors' concerns are rooted in both theoretical and applied interests. To begin

with, they re¯ect the growing importance and pro®le of carers in social policy (e.g.

Heaton 1999). While the importance of meeting the personal needs of carers is now

greatly highlighted, there exists much less clarity about how these might be met

(Twigg & Atkin 1994; Felce et al. 1998). This lack of clarity no doubt stems from the

tendency in research to examine caregiving in isolation from the other social roles

carers occupy or may wish to occupy (Stephens & Townsend 1997). Nevertheless,

carers with multiple role involvement (e.g. carers in paid employment) tend to experi-

ence fewer of the negative effects associated with caregiving (Brody et al. 1987; Skaff &

Pearlin 1992; Stephens et al. 1994; Moen et al. 1995; Kagan et al. 1998). Furthermore, it

can be argued that, in the light of the growing expectations concerning the personal

and working lives of women outlined above, an inability to ful®l personal ambitions

might imply that mothers of children with intellectual disabilities will experience more

forcefully the potential threat caregiving poses to self-identity (Todd & Shearn 1996b;

Chamberlayne & King 1997).

However, such research ®ndings have been contested and the combination of care-

giving and employment has been found to have an adverse effect on carers (e.g., see

Stull et al. 1994; Stephens & Townsend 1997). While contradictory research ®ndings can

be framed within the debate on whether the combination of motherhood and employ-

ment represents role enhancement or role strain (e.g., see Bartley et al. 1992), it is the

present authors' intention to examine the context, felt salience, support and quality of

multiple role involvement in this paper. Thus, while employment may have a positive

impact on carers, it is possible that, without effective support, such effects may be

depressed and the psychological costs of this dual role heavy. There is a growing

appreciation that it is the quality of role involvements (Baruch & Barnett 1986; Ane-

shensel et al. 1993), their context (Wheaton 1990), and the meanings and relevance they

have for individuals (Thoits 1991; Simon 1997) which provide greater insight into well-

being and stress than simply the number of roles individuals occupy. Such concerns

have also been highlighted as important ones to consider in the study of caregiving

(Sloper et al. 1991; Skaff & Pearlin 1992; Sloper & Turner 1993; Stephens et al. 1994;

Todd & Shearn 1996b; Chamberlayne & King 1997; Stephens et al. 1997) and set out a

challenge for the delivery of more effective forms of service support to carers (Todd &

Shearn 1996a; Felce et al. 1998). In the present paper, the authors consider the nature of

support received by a group of mothers of children with intellectual disabilities and

the extent to which it permits them to follow their personal aspirations. Data are used

to provide a contextual and in-depth account of: the experiences of mothers; the mean-

ing work has for them; the extent to which their employment situation is consistent

with their aspirations; the strategies employed by part-time and full-time workers to

= 2000 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 13, 109±131

110 Journal of Applied Research in Intellectual Disabilities

manage the home±work interface; and how formal support services might be used to

sustain and develop these further.

Subjects and methods

Since the present study sought to reveal meaningful descriptions of how mothers per-

ceive their employment situation and aspirations, and how their employment opportu-

nities are socially constructed, data were obtained by qualitative interviews with 18

mothers of children with intellectual disabilities. These were conducted between March

1995 and June 1995 and aimed to acquire a `thick description' (Geertz 1973) of indivi-

duals' circumstances and the meanings their situations have for them (Bryman 1988),

i.e. how their interpretations of their roles and the views of others led to their current

and anticipated employment situation. The qualitative method used in the present

study involved interviewing mothers of children with intellectual disabilities using

McCraken's (1988) qualitative technique, the `Long Interview'. This form of interview-

ing allows participants to talk about topics which are of interest to them as well as cov-

ering matters of importance to the researcher. The approach encourages participants to

use their own concepts and terms.

The participants in the present study lived in a primarily urban county in Wales and

their children with disabilities were aged between 5 and 15 years. By sampling mothers

with children with intellectual disabilities of school age, it was hoped that mothers

would have reached a time when they would be re¯ecting on their own lives rather

than simply those of their children. The women were contacted via social service agen-

cies through a postal questionnaire. The questionnaire sought data on mothers'

employment situation and other demographic data. This is discussed elsewhere

(Shearn 1998a). The postal questionnaire gave mothers an opportunity to volunteer to

take part in the interviews by completing and returning a tear-off slip in a prepaid

envelope. One hundred and twelve questionnaires were sent out, and 72 were returned

(64%). The demographic data collected from the postal questionnaires of the volunteers

were used to construct a sampling frame for the qualitative study.

Mothers aged up to 41 years were included in the sampling pool. It was decided to

only investigate `young' mothers, so as to focus on mothers who belonged to a genera-

tion of women who had grown up during a time when it was more widely assumed

that mothers worked. Out of this sample of 41 mothers, 28 individuals volunteered

their address (68%). Mothers were selected from this group so as to provide a represen-

tative sample for the qualitative interviews. Thus, 39% (n� 7) of the 18 mothers who

contributed to this phase of the study worked in comparison to 32% of the wider sam-

ple.

Procedure

Data were obtained through qualitative interviews carried out by the ®rst author (J.S.).

The interview took place in the mother's home at a time convenient to her. Each ses-

sion typically lasted 2 h. The interviews were semi-structured and used a format outlin-

ing a range of topics (McCraken 1988): employment history; present employment

situation; child care management; the role of others in enabling or preventing employ-

ment; informal, social service and employer support; ®nancial consequences of work-

ing or not working; meaning of work; the perceived attitudes of other people towards

111Journal of Applied Research in Intellectual Disabilities


working mothers of children with intellectual disabilities; perceived or actual outcomes

of working combined with child care and family; and anticipated employment situa-

tion.

A preliminary analysis was conducted over the course of the interviews: analytic

notes were kept and emerging themes were tested. At the end of the interviews, the

data were analysed to uncover categories which could be used to produce a descrip-

tion and explanation of the employment situation and aspirations of participants.

Therefore, the approach was one of re¯exive progressive focusing (Glaser & Strauss

1967).

Results

Employment: an escape from isolation and peripherality

Employment was an activity valued highly by the mothers in the present study. Their

accounts revealed that, while many of their reasons for wanting to work were similar

to those of mothers in general, there were also signs that work held special signi®cance

for them. As other researchers have found, and unsurprisingly so (Glendinning 1983;

Kagan et al. 1998), money was a major motivation. However, although the subjects felt

that earning money was important to provide a better standard of living for their

families, their accounts revealed that employment was unlikely to achieve an increase

in their family's income. Their potential earnings would be outweighed by a loss of the

bene®ts they currently received, particularly that of the Invalid Carers' Allowance, a

bene®t paid to carers in the UK. Coupled with the potential cost of specialist child

care, mothers felt that they could be working for little or no ®nancial gain. Neverthe-

less, the majority of mothers did not consider an increased income from paid work as

the only salient reward of employment and identi®ed others of importance (Glendin-

ning 1983; Freedman et al. 1995). For some mothers, earning an income, albeit for no

monetary gain, meant escape from ®nancial dependency on either ex-partners or state

bene®ts as one mother clearly wished:

`I get maintenance from my ex-husband, but ``the social'' takes that. If I want any-

thing more off him, I have to go and crawl. I wouldn't have that if I worked.'

Mothers tended to view employment as an activity that provided an antidote to a

felt scarcity of adult conversation and companionship, and a lack of variety in their

lives. Most mothers reported that they spent much of their time between 0900 and

1500 h, the period their children were at school, completely alone. The subjects'

accounts also revealed that they felt that their lives were monotonous since they were

con®ned to the same physical surroundings for large parts of the day and lacked the

bene®ts that participation in varied activities might bring. Housework was viewed as

repetitive, unrewarding, never-ending, and offering little opportunity for creativity or

personal achievement (Hoffman 1974; Rothwell 1980; Oakley 1982), as one mother illu-

strated:

`Well, I think I've been at home 9 years, you know, and I haven't done a single

bloody thing that's different. I get really fed up sometimes, I mean, after 9 years of

housework, day in, day out, never doing anything else. I can't stand housework, it's

the most boring thing God ever created. You do it one day and it's back the next. It's

so tedious. In work, you're doing a different job every day. Well, it may be the same



job, but at least you're meeting people, and you're out and about. I can't stand being

in the house on my own. I like being with people and doing things.'

Their sense of frustration was heightened by a regret that they had not been able to

make more adequate use of the skills, abilities or quali®cations which they had

acquired before they had had children. They also did not feel that their role as mother

was a valued one. While mothers felt that the work that they performed as mothers

was skilled and demanded special competencies, they did not feel that others shared

this view. While the role of mother is upheld as the `proper' role for a woman, at the

same time there is another, deeply internalized ideological assumption in modern

society that a full social identity must involve a role as worker. Thus, only paid work

is viewed as `real work' (Crehan 1986; Higgs 1986). It is argued that women's work is

devalued in society (Schur 1984), as is mothers' work in particular (Ruddick, 1980;

Oakley 1982; Higgs, 1986), a point well understood by most respondents:

`They think you don't know nothing because you're just looking after kids. They

think you're thick sometimes! They forget that you've been out there and probably

done a better job than they have, and you're now doing a harder job than they prob-

ably could cope with.'

Although the role of mother was important to them, the women in the present study

also expressed a need for an involvement, interest and identity separate from the

family. Employment was seen as an important and valued way of achieving this. As

some mothers indicated, work was important because it allowed them, as they them-

selves described, ` . . . to be me', ` . . . to do something for myself' or ` . . . to be the per-

son I was before I was married'. The importance of such views is further underlined

when they are considered in relation to the restriction the women experienced as

mothers of children with intellectual disabilities and the extent to which their lives

were ®rmly wedded to the domestic sphere. Their views clearly revealed that they felt

their identities were uni-dimensional in contrast to their past lives and to those of their

peers. Mothers acknowledged that they felt that, in constantly attending only to others'

needs, they were experiencing a loss of self, a feature of caregiving outlined by Todd &

Shearn (1996a) and supported by this mother:

`I'm sort of like being pushed into the background sort of thing. Because every-

thing's the kids, the kids, the kids. Nothing for me like, you know what I mean? They

demand your attention all the time, sometimes you forget who you are. Well that's

why I'd love to go to work because I'd have an identity, I'd know who I was! I'd be

me!'

While many of the reasons mothers provided for wishing to work might mirror

those amongst the wider population of mothers, their experiences also had a more

unique dimension. For example, some felt that paid employment would provide an

alternative focus for their thought and energies, and allow a temporary escape from

family concerns, particularly those relating to their children's disabilities. They also felt

that it would provide opportunities to discover that other people also had problems

and that this would allow them to put their own concerns into a more manageable per-

spective. Importantly, many felt that the lack of employment in their lives had led to a

situation were they had become `left behind', living in a separate and very different

world from that of their peers:

`I am the only one of my friends that is in this position, so I'm set apart from them.

I'm set apart in all aspects of my life . . . You feel alienated a bit.'



A substantial ®nding of the present research was that employment seemed to pro-

vide release from a sense of `peripherality'. This concept is borrowed from research by

Selwyn (1990) to describe the way that couples who are unable to conceive or adopt a

child experience a feeling of difference and exclusion from other families they know.

Similarly, the mothers in the present study felt that they had come to acquire a special

identity which located them on the margins of society. Research lends support to this

sense of peripherality since it has been found that maintaining social contacts are pro-

blematic for mothers with children with intellectual disabilities (Birenbaum 1968;

Abbott 1982; Pahl & Quine 1987; Harris & McHale 1989; Hautamaki 1996). For exam-

ple, the following mother described how her son's destructive behaviour made it dif®-

cult to visit friends in her son's company and also to ®nd substitute child care so that

she could go out on her own:

`I don't keep in contact with anybody now really because I can't visit. I can't take

Calum anywhere. He's just too destructive. I took him over to my sister's and he

smashed their brand new telly. You can't even arrange to go out in the night because

not everybody can look after Calum, see.'

It could also be dif®cult for mothers to ®nd shared topics of conversation with other

adults. Some mothers feared that their main area of interest was too narrowly focused

and overly concerned with intellectual disability, and that it was dif®cult for them to

®nd shared topics of conversation with people not connected to disability. This made it

dif®cult for these mothers to retain social relationships and they felt that work would

provide them with experiences which would enable them to participate in broader

social intercourse:

`You do feel left out when friends talk about work. I want to be able to talk about

work. They can talk about things that happened in work and things that happened to

someone else who they know at work. Well I can't talk about anything like that

because nothing happens, I'm just stuck home in the house. All I can talk about is

housework or about my trip to the hospital with Lauren.'

In the context of the general trend for increasing maternal participation in paid

employment, the subjects' own lack of employment was seen by some as a further

divergence from the lives of other women they knew. This nurtured their sense of per-

ipherality. Therefore, paid employment was viewed as an activity that could enable

them to feel positively included in society since it is an increasingly normative one for

mothers. Overall, non-working mothers perceived employment to be a positive experi-

ence, but one that they were being excluded from. Given the above, a deeply perturb-

ing aspect of the lives of parents of people with intellectual disabilities is the tendency

to feel that one's life is increasingly at odds with one which was once personally salient

to them. Therefore, the inability to follow through employment-related aspirations is in

itself a negative experience (Todd & Shearn 1996a). Like mothers in general, the sub-

jects valued work for ®nancial reasons, autonomy, adult conversation, variety of

experience, meaningful activity, a chance to use skills and abilities, and to validate

their sense of personal identity and worth. However, accounts by mothers revealed

that employment also had a unique meaning for them because they were mothers of

children with intellectual disabilities. While most respondents indicated that there was

pleasure to be derived from being a mother of a child with intellectual disabilities,

mothers saw employment as an important release from some of its pressures. As one

mother stated:

`We're [mothers] shut in, we are literally shut in. This is it! This is our world!'



The day-to-day struggles of mothers' lives

It was clear that many mothers felt that employment was important to them and that

they held aspirations for their own lives which many women of their age might hold.

However, as the data below reveal, there existed little in the way of effective or ade-

quate support for them to be able to be able to realize those aspirations, either now or

in the future. As a result, the majority of women in the present study did not work,

and the data in this section provide a description of the range and nature of the obsta-

cles which they faced. These include the nature and range of caregiving tasks, an

inability to effectively segregate social roles, moral proscription, and a lack of adequate

and accessible support.

Temporal demands of motherhood

The types of work which mothers perform in looking after a child with intellectual dis-

abilities has been well described in the research literature, and therefore, these are only

brie¯y outlined below. Mothers perceived that the time demands of their families were

far greater than those placed on mothers with non-disabled children (Ayer & Alas-

zewski 1984). The nature and range of tasks associated with caring for their children

(e.g. washing, feeding, toileting, supervising, transportation and recreational organiza-

tion; see Shearn & Todd 1997) were felt to be akin to those associated with caring for

much younger children and were extremely time consuming. Mothers whose children

had severe intellectual or physical disabilities and/or had challenging behaviour

reported that the care work that they performed was particularly demanding. The fol-

lowing account of one mother, whose son was aged 9 years, illustrates this point well:

`He can't do anything for himself, he's totally dependant. He may never come out of

nappies. and just feeding himÐit's been nine years of putting a spoon in his mouth

and having the bowl thrown, and cleaning up the food off the ¯oor. He's got a habit of

stripping off, shredding his nappies, whether it's clean or dirty. The content goes abso-

lutely everywhere. I think he paints with it. I can't take my eyes off him. He's exhaust-

ing!'

Mothers also felt that they performed work that is not typically encountered by

mothers of non-disabled children. As found elsewhere (Beresford 1994, 1995; Freedman

et al. 1995), some mothers had to administer complex medical treatments to their chil-

dren and attend numerous medical appointments with them. In addition, some sub-

jects also had to spend considerable time with their children when they went into

hospital. Mothers' involvement with a range of social, educational and health service

professionals and agencies as a consequence of their children's disabilities itself also

created work (Shearn & Todd 1997). For example, many women felt they had to argue

for, look for and organize services for their children, and this took considerable time.

There was considerable work involved in their role as mothers that had to compete

with the time given to other activities. As the sections below reveal, the role of `mother'

was expected to be the dominant one and there was little support provided to prevent

it permeating other spheres of life.

Multiple role-management and identity breakthrough

The amount of time available to mothers was further curtailed by the special demands

of the work involved in looking after a child with a disability. These demands made it

dif®cult for mothers to combine a variety of other tasks alongside their care work. This



contrasts with the experiences of women in general, who often combine tasks to maxi-

mize their use of time (Davies 1990). Much other family or domestic work had to be

done when children were in school or in bed. For example, some prepared meals when

their children were in school since this could not be done when their time and attention

would be absorbed in supervising or keeping a disabled child occupied. Shopping was

another activity that had to be, for some, conducted without children, and therefore,

was accomplished when children were at school:

`We cannot go to the shops with him. He'd be banned. He'd smash so many things.

You can't hold his arms and legs down and pay for your goods and collect your

goods.'

Thus, to ensure that the limited time available to them was used to meet all their

domestic responsibilities and personal needs, mothers had to perform àrticulation

work' (Strauss et al. 1985), i.e. they had to ®nd, plan and organize time for: the care of

their disabled children; domestic work; the care of other children; their partner; their

own leisure; personal care, such as washing and dressing themselves; and rest and any

other activities. Under such pressure of time, mothers prioritized the needs and time

schedules of their families above their own personal needs. Therefore, they placed self-

imposed restrictions on their use of time. As described above, the time when their chil-

dren were at school had to be reserved for domestic work and personal care, and

could not be easily committed to activities such as employment.

One particular feature of the time demands associated with being a mother of a

child with intellectual disabilities was that, even when their children were at school

and if such time could be devoted to employment, the maternal role was always at

risk of `breaking through'. They were relieved temporarily from the direct care of their

children, but like individuals who are inseparable from their occupational roles such as

physicians (see Zerubavel 1981), they were expected to activate their duties whenever

they were in demand (Todd & Shearn 1996a). For example, mothers felt they had to be

available during the day to take their children to health appointments, to meet with

social services and education professionals, and to participate in school activities, as

found elsewhere (Sloper & Turner 1993). They were expected to be on call during the

day to collect their children the moment they became ill or were injured at school, or

even if staff had dif®culties managing their behaviour. While this is a feature of

mothers' lives in general (Davies 1990; Brannen & Moss 1991), it was felt to be more

likely for this group of mothers:

`With normal children, you get your normal run-of-the-mill playground scrapes. But

serious incidents don't tend to happen as often. In any period of 3 months, they would

maybe have one accident. You're going to get ®ve or six with a special needs child. In

a special school you've got 80 kids with special needs who sort of don't care who they

lash out at. You feel like you're tied to the house in case the phone rings.'

The demands of caring for a child with intellectual disabilities implied that mothers

would only be able to take up employment that had a loose and ¯exible time structure,

one which would allow them to prioritize their child's care demands. Mothers believed

this to be largely inconsistent with the temporal discipline of current employment prac-

tices, and therefore, they tended to perceive themselves as ùndesirable employees':

Òbviously, I'm only available for 39 weeks per year because of the school holidays

and there are inset days. If ever James is unwell, then obviously I have to be here to

look after him. Also, at the drop of a hat, I might have to go home if James is ill at



school. So, from the point of view of an employer, I wouldn't imagine I would score

very highly on a desirability scale because I would be potentially unreliable.'

The factors described above were seen as largely insurmountable by most of the

mothers in the present study. Therefore, they largely ruled out being able to combine

motherhood and employment. However, there were another two factors which prohib-

ited work. These were the lack of adequate support and a sense that, as mothers of

`special children', employment was, at least in the eyes of others, an illegitimate con-

cern.

Informal and private child care

Many mothers in the present study revealed that, in order to work, they would need

to overcome some of the dif®culties highlighted above. Since this could not be done

within their current resources, it required mothers to seek substitute care, in particular,

but not exclusively, before and after school, and during the school holidays. However,

their accounts suggested that ®nding substitute child care was more problematic than

for mothers in general. The preferred substitute child care arrangement for mothers in

the general population is their informal network such as family, friends and neigh-

bours (Brannen et al. 1994). However, some mothers had lost relatives or had relations

who lived too far away. In addition, some felt that other mothers they knew would

not want to help because they had their own children to look after or were working

themselves:

`All my friends work. So, I mean, there's nobody really in the day who could help. I

did have slightly more help in the past, but women do work more now than they used

to.'

With one exception, mothers living with a partner did not feel that there was an

equitable distribution of responsibilities between them. This has been found for

mothers in general (Brannen & Moss 1991). However, as found elsewhere (Bristol et al.

1988), most mothers in the present study felt that their husbands assumed less respon-

sibility for family tasks than their perception of fathers of children without disabilities.

Indeed, mothers' comments revealed both a belief that their husbands lacked the skills

and ability to cope with their child's needs and behaviours, and an observation that

their husbands were not as willing as other fathers to spend suf®cient time with their

disabled children. It is possible, and worthy of dedicated study, that such families'

lives are built around a more idealized version of the gendered division of family

labour.

Mothers perceived that their children were more vulnerable to accidents or events

which might cause emotional upset or physical injury. In turn, they saw themselves as

`special mothers', owning exclusive competencies acquired through prolonged expo-

sure to the particular needs of their child. These were not seen as typical or natural

competencies. Mothers felt that it was dif®cult to ®nd others in their informal networks

who possessed similar competencies to care for their children. In particular, this

excluded an important source of support, that of slightly older siblings and older rela-

tives. They pointed out that, under `normal circumstances', their older children and

older relatives would normally be able to baby-sit for their younger children. However,

the responsibilities were viewed as too great for older siblings and too physically

demanding for older relatives. While mothers viewed the work that they did as `special

work', giving them a special maternal identity, it was seen as `uncoveted work', i.e.



they believed that others in their informal network as well as private child care agen-

cies were unlikely to want to look after their children:

`The main reason I'm not working is the fact that, if he were a normal child, then I

could call on friends to a certain extent to help me. They all have an arrangement

where everybody helps everybody. But the amount of attention that you have to give

him is so much more than a normal child that it's exhausting really. You can't switch

off at all. You just can't expect friends to do that, and not that they want to anyway.

It's not the sort of thing I'd put upon somebody.'

If mothers felt that their informal networks might not offer adequate resources, it

was also clear that there was little adequate support available from services or other

organizations. As with other mothers with disabled offspring (see Todd & Shearn

1996b), they valued the support services which they received and the occasional break

it provided from having to balance all their children's demands simultaneously. How-

ever, despite the support that they received, only one mother stated that she was

receiving enough services to noticeably reduce the demands of caring for disabled and

non-disabled children, and running a home, let alone help her work. In keeping with

an emerging body of research (Todd & Shearn 1996a, b), these ®ndings suggest that

the support services were inadequate for encouraging participation in non-parental

activities, in this instance maternal employment. For example, ¯exi-care and respite

care were not provided at times which would support mother's involvement in

employment, such as at the beginning and end of the school day, and/or over school

holidays. Some mothers considered that services, such as `link families', had only been

provided to enable them to spend more time with their non-disabled children and they

would lose such services if they used them for other activities, such as paid employ-

ment, a point returned to below. Some mothers felt that using support services to

work was making illegitimate or improper use of them. During the interviews, mothers

were asked whether they felt that service providers were aware that they wished to

work. Most had not discussed this. They felt it would be pointless since resources were

limited and were currently not even managing to successfully achieve their current

goal of lessening the load of caring. Some had already been engaged in battles with

social services to obtain respite services. The dif®culties they had encountered strength-

ened their perceptions that requesting any additional support would be futile. Impor-

tantly, some respondents also felt that service providers would disapprove if they were

to request support that could be interpreted as `sel®sh'. Others were reluctant to

increase the level of service involvement in their lives or to hand over control concern-

ing who would look after their child:

`With a normal child, you could choose. You could say, ``Oh well she doesn't look as

though she's settling down here, I'll take her away from here.'' Well I couldn't do that

with social services. They would say we've got nobody else available at the present,

you have to manage with this person. I mean, if they got their facts wrong about a per-

son, Caroline wouldn't know what's going on. Caroline is totally reliant on that person

who is looking after her. You only see that person when they come to take Caroline

and bring her back. In other words, the situation is totally out of your control.'

Some mothers had negative experiences of using existing service support and did

not feel that they would be able to rely on it to provide an acceptable standard of care

so that they could work. Some claimed that services could be unreliable since domicili-

ary workers sometimes did not turn up as arranged and could not cope at other times.

Many women also felt that such workers lacked the skills to care for their child because



they were changed so frequently that they did not develop `expert knowledge' about

their children's speci®c care needs. Finally, mothers also pointed out that there was a

lack of private child care agencies which had staff trained to deal with their children

and that the cost of specialist care for children with special needs was prohibitive,

re¯ecting the special and extensive care these children required:

`She needs someone specialized. Mark [non-disabled offspring], his school were talk-

ing about having school facilities for mothers who were working during the summer

holidays. and Juliette [non-disabled offspring] goes to a private nursery and they're

opened all year round. So that would take care of them. But then I'm back to the same

problem with Caroline because there's no specialist help.'

Moral proscription

A key variable in¯uencing the relationship between the home and the workplace was

the concept of the `good mother'. Subjects indicated that they were eager to provide

the best possible care for their children and to consider themselves a `good mother'.

Their accounts revealed that this concept was ®rmly anchored to their use and prioriti-

zation of time. Typically, where there was a shortage or incompatibility of time,

mothers felt they should sacri®ce their own needs and desires to that of their families,

mirroring ®ndings elsewhere (Laws 1979). Accordingly, while mothers' accounts

appeared to re¯ect a growing acceptance that women should be able to participate in

paid employment (Brannen & Moss 1992; Newell 1993; Brannen et al. 1994), their

accounts indicated that they did not feel that it was acceptable to allow employment to

interfere with the welfare of their children. Thus, while mothers valued employment,

they also tended to see it as self-indulgent, particularly since the bene®t system,

together with the cost of child care, meant that employment would bring little or no

®nancial gain to their families. For some women, the decision to have children entailed

a personal subscription to the idealized model of the `good mother':

`Because I chose to have children, for myself personally, I don't believe in giving

birth, and then going out to work and leaving the child with somebody else. I'm their

mother. I know other people have different ways, but for myself, I believe I had my

children and I want to be the one to look after them.'

Nevertheless, there was some variation between participants in the amount time that

they felt ought to be devoted to child care and whether, if at all, any of this time could

be delegated to someone else. Some mothers felt that they should be with their chil-

dren constantly when they were not at school, and therefore, would not consider sub-

stitute child care. Many mothers in general are reported to experience guilt and anxiety

about leaving their children in the care of others. This is thought to stem from a wide-

spread belief that only the mother's care is good enough (Brannen & Moss 1991). How-

ever, mothers' judgements about the vulnerability of their children, the nature of their

impairments and the lack of suitable support, no doubt heightened the sense that only

their own care was adequate. As described above, their special identities brought with

them `special responsibilities'. These responsibilities, as well as limiting the depth of

their support networks, also brought with it a deeply rooted anxiety. The subjects felt

that they would be harshly treated if they were seen to place their own needs before

those of their child in order to work, thus underlining their tendency towards `sel¯ess-

ness'.

Mothers felt that other people held views about how much time they should spend

with their children. Such people included those who are typically thought of as helpful



and supportive; for example, partners, other parents and service personnel. Mothers

reported that their partners held attitudes concerning the amount of time that they

should spend with their children and about substitute child care which were similar to

those reported by mothers in the general population (Rothwell 1980). Some husbands

felt that their wives could work if they (the mothers) made sure that their children

were being `properly cared for' by another. Others held stronger attitudes against their

wives working, believing that they should always be at home when their children got

home from school and during school holidays:

`He couldn't complain about a couple of hours. As I say, if it was a full-time job or

whatever, he'd have cause for complaint. Well, with the children and stuff like that, if I

wanted to go out and work, he would say I shouldn't have had children.'

The unprecedented growth of the number of women in the workplace has been a

signi®cant change in family life over the past few decades, a change supported by a

more general acceptance of non-familial roles for women (Thornton 1989). Neverthe-

less, if mothers in general may continue to face criticism for working and thereby

neglecting the family (Rothwell 1980), the mothers in the present study seemed to feel

that there was little acceptance of their working needs, and that they were expected,

more so than other mothers, to conform to traditional gender roles. The subjects

seemed to indicate that their desire to work could easily be seen by others as an act of

sel®shness and that realization of this desire might be considered deleterious to their

disabled child. Thus, it appears that the ideological tenet that a `woman's place is the

home' applies more strongly if she is the mother of a child with disabilities. It is possi-

ble that such criticism may be more strictly applied to mothers of children with intel-

lectual disabilities, and also for a substantially longer period, because of the continuing

dependency of their offspring. The mothers in the present study revealed a keen

awareness of how others might judge their efforts as `special mothers', and shared

Schur's (1984) view of the social dif®culties employment raises for mothers and the

fear of the verdict of ùn®t mother' that others might pass. One mother was clear that

the role of `sel¯ess mother' was one she was expected to perform and that it was less

acceptable for mothers of children with intellectual disabilities to work because such

children were thought to be dependent on their mother in a way similar to that of a

very young child:

`Because you've got a handicapped one, and that child only associates with you,

they think you're being cruel. People are shocked when you say to them that your

child goes to school. `Òh, I thought you had them home all day.'' It's because a handi-

capped child like ours, who's totally dependant on their parent, is like a new-born

baby. But going to work doesn't mean you don't care. You're going to work because

you want to make life better for them. They think you're going to work because you

can't stand being with them all day!'

Unsupported employment

`My mum heard of a little part-time job going, just photocopying. I can remember

going to work. The sun was shining. I had the radio on and it was lovely. The kids

were in school. It was nice on my own, in my own car playing Gloria Gaynor, `Ì Will

Survive''. I was going to earn my own money. I was actually going into work and mix-

ing with people. It was a new experience for me, it was just wonderful.'



The accounts of working mothers supported the potential bene®ts other mothers had

linked with employment, but not without some quali®cation. They felt that employ-

ment had protected them from some of the negative aspects of being full-time house-

wives and mothers so evident in the accounts of non-working mothers; for example,

isolation, monotony, the low status of housework and dependence on male partners. It

also enabled them to escape the sense of `peripherality' from society. Some mothers felt

employment was important to keep them going through stressful events relating to

their children's disabilities. Indeed, one mother reported that having a job helped her

through the emotional trauma of the diagnosis of her son's disability:

`It hit me hard. It broke my heart. It's the only way that I handled it, by going to

work.'

However, while all mothers valued employment, their accounts revealed their

experience of employment was not entirely positive. While these working mothers

might be considered `success stories' in that they had found solutions to their employ-

ment dif®culties and were reaping the assumed rewards outlined by non-working

mothers, the accounts of the working mothers revealed an altogether different picture.

Rather, their experiences validated the obstacles outlined by those mothers who were

not working, and highlighted that this group of mothers were performing a ®ne balan-

cing act between the needs of their children, other family members, employers and

themselves, often at considerable personal cost. The longer the hours which they

worked, the more pronounced these dif®culties were and the more precarious their

support was.

Fitting-in

For most working mothers interviewed in the present study, their involvement in

employment was restricted to a few hours a day, often in low-paid, low-skilled jobs,

such as being a supervisor of school children during dinner hours. These mothers

viewed their jobs as convenient. The work allowed them to balance employment with

domestic responsibilities and permitted a modest income which did not affect their

bene®ts. These mothers reported that they had selected these jobs because they allowed

them to be with their children outside school hours. They also reported that their

employers were fairly sympathetic to their extra child care responsibilities, and allowed

them some time off to collect their children because of illness, injury or when they had

a medical appointment. The subjects felt that such leniency was partly because of the

fact that their work was low-skilled and that ®nding a replacement was unproblematic

for their employer. Mothers predicted that, if they were performing more demanding

jobs, their employers would not be as tolerant. The following account of one mother

who worked preparing meals in a school kitchen illustrates this point:

`Where I work now, they're very understanding. They don't mind because, after all,

it is only a part-time job. It is easy for somebody to step into my shoes. If you were

doing a job that held some responsibility, like a secretarial job, you can't expect any-

body else from another of®ce to step in and carry on doing your work. Employers

wouldn't look on you very favourably.'

While mothers had selected jobs which ®tted in with the demands of home, many

still encountered dif®culties in balancing work with their child care responsibilities.

Those who worked in schools had the additional advantage of being able to be with

their children during the school holidays. Those mothers not working in schools

reported that they had inadequate support to cover the school holidays. Furthermore,



mothers found it dif®cult to replace support when their child care arrangements broke

down. At such times, they felt that they could not ask services for support since, like

non-working mothers, it would be futile and treated as an illegitimate request. More-

over, some mothers reported that there were dangers in involving services to help

them balance domestic work with employment. For example, one mother reported that

she did not want services to know the number of hours she was working, fearing that

services would disapprove. It is important to note that she even feared services might

take her son away from her:

Ì thought, `Òh! What if the social services think I'm working too much, when I've

got a special needs child? Will they take him away from me?'' I don't tell them I'm

working.'

However, the subjects often had to rearrange appointments given to them by social

services and health professional during working hours to minimize the impact that

these had on their employment. As described above, many mothers who did not have

a job indicated that they would feel guilty if they worked since they could not always

be with their children. To avoid this, many mothers who worked part-time had

selected jobs which had a minimal impact on their duties as mothers, and thereby,

they avoided feelings of guilt as well as moral pressures from others. However, the

type of job that they did was inconsistent with their work aspirations, thereby dampen-

ing the derived bene®ts of employment. Only one subject, who worked part-time as a

family carer, felt that she had a satisfying and ful®lling job. Most mothers who worked

part-time felt that their jobs allowed them little expression of creativity, did not pro-

vide them with opportunities to use their abilities and skills, and gave them little sta-

tus. The following accounts from two working mothers (one worked part-time in a

pub and the other in a school playground) illustrate this point:

Ì trained to work with special needs kids, I always wanted to do it. I was offered a

job in the hostel before Rhys. It gnaws away at me that I didn't work there. If I'd have

done that, I'd still be doing that and I'd be quite high up because, without sounding

big-headed, I'm not a stupid woman. I feel frustrated because I'm not using my abil-

ities and I feel a bit guilty sometimes. I think I've done 2 years training and I didn't use

it, it is a waste. and that's got to be my biggest regret.'

In the next case, work was viewed as too closely resembling the experiences of home

and motherhood, and did not offer the variety and adult contact many mothers

expressed a desire for:

Ì'm a mum at work as well really. My boys are in the school. It's not really what I

want to do. You don't dress up to go there. You've got kids' hands on you all the time.

You don't put on any make-up, you go down there as ``Mum''. An of®ce or something

would be a different branch of my life. The school is still connected to home. It's con-

necting me with children. I'm fed up with being ``Mum, mum, mum, mum''. It would

be nice to be called ``Karen''. It's nice not to have someone tugging at you.'

Thus, while some of the mothers worked, the majority had opted for work which

was not consistent with their competencies or their aspirations for adult contact and

personal development. The following section reveals that mothers who had sought and

found such work encountered a range of dif®culties which were always potentially

overwhelming, and which reveal that the arrangements they had made were never so

fully established that they could be pushed into the realm of `taken-for-grantedness'.



Right place, right time but left over-stretched

Two mothers in the present study worked full-time and in more skilled jobs. One

mother worked as a secretary, the other as a medical administrator. These mothers

were dependent on child care support from their informal networks; for example, an

older son, relative, neighbour or ex-husband. These were people who had known their

children for many years, and thus, had secured the special competencies related to the

care of their children. They were perceived to feel some special bond with their chil-

dren:

`If, while I'm in work, something crops up and nothing's been arranged, then I have

to try and get hold of one of my neighbours. My neighbour's been my main baby-sitter

since the children have been small. He's out of work at the moment so he can help out.

I would leave Sharon with him without any doubt at all. I have seen how he is with

her, he absolutely adores her, he's always been very good.'

The situation for mothers working full-time differed considerably. While they shared

a perception that they should place their families' well-being above their own, these

mothers felt that employment was not a self-indulgent pastime. They de®ned work as

not only bene®ting themselves, but also their families. Thus, work was seen as crucial

to secure the day-to-day life of the family and the psychological bene®ts of employ-

ment enabled them as mothers to cope with the demands of their families. Conse-

quently, as dif®cult as combining employment and motherhood was, they argued that

it made them better mothers. Re¯ecting ®ndings by Callender (1992), the following

account of a single mother reveals how she felt that employment was not secondary to

her domestic tasks, but was part of being a `good mother':

`You have a responsibility to go to work for a living. It's your responsibility to keep

a roof over his head, to keep him fed and clothed. You've got to provide, where else

would I get it from?'

These two mothers worked in jobs which demanded more skills and were of higher

status, and they reported that their work provided them with the potential for heigh-

tened satisfaction. Nevertheless, their accounts revealed that they found the experience

of balancing their employment and their domestic responsibilities extremely stressful.

For example, one mother who worked full-time revealed that time for her own perso-

nal care had been squeezed out: she declared she had no time to relax and that on

occasions she was unable to ®nd time to wash or feed herself:

`I went to work not having had breakfast, I wouldn't have a cup of tea. I got to the

stage where I didn't bother putting make-up on. I'd wear the same clothes for four

days to cut down on the washing and they'd start smelling. I wouldn't have time to

have a bath because I'd be so busy seeing to the kids and the house.'

The subjects revealed that they experienced severe feelings of guilt from, in their

view, failing as dutiful mothers. This stemmed from being unable to participate in

their children's school activities or from feeling that they were neglecting their non-dis-

abled children. These mothers were caught in an acute dilemma: not only did they

wish to gain ful®lment, they also felt bound to provide ®nancially for their family, and

thus, felt compelled to continue in employment:

`There is certainly a lot of guilt with employment. As I said before, I need to be in

about four places at the same time. If I'm at work and Sharon's taken ill at school, then

you get that guilt straight away. I feel I should have been at home. But I know, if I'm

at home, just doing nothing, I've got that guilt thinking I should be out bringing some

money into this family. It's a no-win situation really.'



The stress some mothers experienced was also exacerbated by their perception that

they were failing as employees. Although several working mothers had managed to

®nd understanding employers, maintaining favour with them was experienced as a

struggle. They tried hard to minimize the time they had off work, feeling that they

could lose their jobs without such self-imposed control. This fear was not without

some foundation. One mother reported that her employer had criticized the amount of

time she took off work to take her son to his hospital appointments. It was pointed out

that she should prioritize her job above her family's needs. Because she was unable to

do this, she felt obliged to leave her job as a medical administrator. She subsequently

returned to a similar job with poorer pay and poorer entitlements:

`At the hospital, they'd just told me Aden was epileptic. I should have come straight

home to digest it, but I had to go back to work. I had asked for the whole day off, but

my boss said that I couldn't because someone else would be off. So I told him I'd be in

as soon as I was ®nished at the hospital. When I got back to the of®ce, he called me

over. He said, ``Look, all these appointments, the company must come ®rst.'' He just

given me another blow, hadn't he! I'd had one blow that day because of the epilepsy,

and I think he'd just gone and hit me in the other eye. Eight years with the company!'

Securing and maintaining child care support could also add to mothers' experience

of stress since they had not found an ideal solution to their support needs. They were

faced with heavy emotional costs from the support that they gained; for example, one

mother felt very guilty about depending on the support of her eldest son who had his

own interests to pursue. These mothers reported that they did not receive any help

from outside agencies similar to those mothers working part-time. While they were

thankful for the support they received, the subjects felt that it might not be so easy to

maintain this level of support in the future, as discussed below. For the most part,

therefore, the two mothers who worked full-time reported that their jobs coupled with

their domestic demands caused them considerable stress. It is noteworthy that both

had reported having had `nervous breakdowns' which they believed were related to

their full-time employment. One of these mothers was currently on sick leave and the

other had recently asked her mother to look after her child full-time during the week.

While mothers in general may experience extreme great stress from balancing their

work with their families (Epstein 1986; Brannen & Moss 1991), these mothers' accounts

suggested that such dif®culties were exacerbated by the nature of the time demands of

their children with disabilities, as suggested elsewhere (Parker 1990). However, even

under such severe pressure, mothers maintained that paid work was important for

their mental health. They felt that they would be unable to carry on caring without a

break from their children, and an escape from the isolation of being at home and the

unful®lling nature of housework.

Therefore, the mothers' accounts revealed that, although some were currently work-

ing and that they valued their jobs highly, the bene®ts which they derived from

employment were severely restricted, either by the unful®lling nature of the jobs which

they did, or else by the extreme stress and guilt they experienced from having to bal-

ance competing demands of domestic work with employment. However, despite this,

all working mothers felt that employment was important to them at some level and

wished to continue working. One mother expressed this sentiment in the following

way:

`I'd be a raving lunatic if I didn't go to work because there would be no outlet what-

soever. If I didn't work, I couldn't keep doing what I do with Rhys. I'd be horrible, I'd



be hateful. Because we get into times where I'm like a 14-year-old because he's arguing

and I'll argue back at him, like a kid. Work keeps me going. It's like two roads. My job

is like a road up here [gestures with hand]. Everything I have to do at home, is like a

road down there [gestures with hand]. Running along this road up here keeps me

going on the road down there.'

The future

Most mothers were pessimistic about their future employment situation and felt that it

was unlikely their employment status would alter much over the coming years. They

expected that their children would continue to live at home for an indeterminate num-

ber of years and that the demands made upon them would continue to be consider-

able. Such a situation is at odds with the family and employment careers of most other

mothers. While mothers with non-disabled children are increasingly likely to be found

in full-time work as their children mature (OPCS 1993; Brannen et al. 1994), research

suggests that mothers of children with intellectual disabilities rarely take up full-time

employment as their children age (Glendinning 1992; Shearn 1998a). However, those

mothers in the present study who felt that the situation might change in the future, felt

it would change for the worse. Some believed that the number of hours that adult ser-

vices would care for their children might be less than they received now. This belief is

supported in the research literature, which indicates that adults with intellectual dis-

abilities increasingly receive fewer hours of day service than before and compared to

school hours, and almost one in ®ve adults living at home with their parents do not

have any day service (Todd et al. 1993). Thus, as their children became older, the

employment opportunities for mothers may well diminish further. The growing diver-

gence between the careers of mothers of children with and without disabilities is only

likely to exaggerate a sense of peripherality in later life (Todd & Shearn 1996a). One

mother clearly anticipated such events:

Òur [mothers of children with intellectual disabilities] life is not our own, I know it

isn't your own when you have kids but what do they always say, `Òh your kids have

grown up and gone now, so you've got a life of your own.'' I can't look forward to

that. I might have Lauren for the rest of my life. I've actually seen one woman in her

sixties looking after a child like Lauren, on her own, and she doesn't get support.'

Mothers who depended upon informal support also recognized, as other carers have

(Freedman et al. 1995; Todd & Shearn 1996b), that informal networks alter over time.

Thus, mothers who had managed to ®nd child care support from their informal net-

work were beginning to face up to the possibility that they might lose support in the

future. For example, supporters may become older and unable to provide support, or

may move into jobs themselves. For example, one mother's support arrangement was

dependent on the goodwill of an older child. He was becoming increasingly indepen-

dent from his family and was not keen to continue to look after a disabled sibling.

Unfortunately, his mother was encountering dif®culties in ®nding someone else to

look after her 14-year-old son with intellectual disabilities:

`My son, Tom [non-disabled] is 16. He's doing his own thing now. Also, Tom's had

a rough time with Rhys because, if Tom used to bring his friends home, Rhys used to

perform. Tom used to get embarrassed, so he's not got a lot of time for Rhys. He stays

in with him because he knows it's helping me, not through choice. It's dif®cult now

getting somebody to be here. Also Rhys says, `Ì don't need a baby-sitter''.'



Furthermore, while mothers in general use child care to enable them to work when

their offspring are children (Epstein 1986; Brannen & Moss 1992), the use of child care

was likely to become less normative as their children grew older. This had implications

for the future of this support. For example, one mother was currently able to recipro-

cate the support she received. However, it was likely that she would eventually be

unable to do this because her friend's son became increasingly independent and no

longer needed `baby-sitting'. While ®nding child care was likely to become more dif®-

cult, their need for support to enable them to work was likely to continue since their

children were likely to remain dependent.

Non-working mothers perceived that, even if the obstacles they faced in gaining

employment were removed, they would continue to be ùnemployable'. Many felt that

their chances of employment had or would diminish as a consequence of being out of

the labour market for so long. Some felt that they had lost skills and that some of the

skills necessary for employment had changed during their years of unemployment.

They also felt that employers would see them as undesirable simply because of their

long absence from work. In a competitive job environment, mothers felt that without

training, they would stand little chance of being employed:

Ìt's doubtful whether somebody would employ me. They all go for the young girls

now. I haven't worked on a till since 1981. They're all different now. I wouldn't know

how to use one.'

Overall, owing to the continued dependency of their children, the uncertainty of

future support and lack of help to gain training, most mothers were pessimistic about

their future employment prospects. Many mothers in the present study were drawn

towards the view that they were likely to be `perpetual mothers' and would always

lack opportunities to be able to develop other aspects of their lives. When considering

such a future, one mother summed up its value if it were not to change:

Ìt wouldn't be a life would it? You'd just be stuck in the house doing the cleaning.'

Discussion

While mothers of children with intellectual disabilities are vastly under-represented in

the work force compared to mothers in general, the data would suggest that they are

not happy with this situation. Work was a salient aspiration for many. Their absence

from the workplace was not through choice, but an outcome of the shortcomings of

support, including a lack of adequate and affordable child care. Furthermore, behind

these factors lies the powerful in¯uence of gender. Although there is evidence that

understandings of appropriate roles for mothers are altering, for mothers of disabled

children, as for carers in general (e.g., see Baldwin & Twigg 1991), gender is still an

obdurate in¯uence. Such attitudes were internalized by mothers themselves, leading

them to see their dif®culties as a private rather than a public concern. As a conse-

quence, many mothers did not vocalize their need for support and there are few who

might encourage them to do otherwise, as one mother commented:

Ìt's really the ®rst time I ever dared think about how I really feel about these things,

let alone had the opportunity to talk about them.'

Perhaps in contrast to a substantial proportion of the care-giving literature, the pre-

sent study indicated that the stresses which mothers encounter do not derive solely

from their care-giving tasks, but from their inability to build adequately on other

important life domains, such as employment (Todd & Shearn 1996a; Felce et al. 1998).



The present study revealed the emotional and psychological costs in these mothers'

lives which derived both from the lack of employment and the lack of being supported

in employment. Like many mothers at home with young children, those who did not

work experienced, in varying degrees, isolation, lack of ful®lment, low self-esteem and

®nancial dependence. For some, it led to ®nancial hardship. They also experienced

costs unique to mothers of children with intellectual disabilities, i.e. a sense of being on

the periphery of society, and a lack of an alternative focus of thought and energies that

might provide a release from some of the pressures of caring. However, the experi-

ences of those who had a job were not altogether positive. Many of the subjects who

worked were in part-time jobs which were low paid and of low status. These mothers

did not have jobs which were consistent with their aspirations, nor did they work in

settings where they could use their skills and abilities to the full. Those who attempted

a full-time job were faced with a heavy workload: they had to meet demands from

both home and work; with accompanying stresses; and con¯icts and tensions which

eroded the possible bene®ts which participation in employment might offer. Further-

more, and unlike the majority of other mothers, the dif®culties of managing employ-

ment and parenting were likely to be enduring over the life course. It appears that

there remains much to be done in terms of achieving a more informed understanding

of the links between caring, life-course concerns and the provision of effective support.

While intellectual disability policy seems to be justly concerned with improving the

rights and opportunities of people with intellectual disabilities, there seems to have

been a glaring neglect of the rights and opportunities of their parents. Within the ®eld

of intellectual disabilities, it has become increasingly accepted that people with disabil-

ities should be given opportunities for employment (Oliver 1996; Ramcharan & Bor-

land 1997; Souza 1997). Employment has been championed as an activity that offers

many rewards; for example, meaningful activity, self-esteem, social integration and

®nancial gain. A number of initiatives have arisen to support people with intellectual

disabilities in `real' jobs (Beyer et al. 1996). Nevertheless, there appears to be scant dis-

cussion of the employment needs of their mothers. However, it is evident that these

mothers, like their children, are constrained in their ability to make genuine choices

about employment. If they are to have jobs, and importantly, jobs offering adequate

®nancial reward, personal ful®lment and social inclusion without undue stress, then

these mothers, like their children, need adequate support. Evidence that the inability to

participate in employment may be linked to stress and dissatisfaction in the caring role

(Bradshaw & Lawton 1978; Bristol et al. 1988; Walker et al. 1989; Qureshi 1993; Sloper

& Turner 1993; Beresford 1994; Todd & Shearn 1996a) should not be overlooked.

The present paper highlights several areas which require the combined attention of

employers and service providers in partnership with parents. There are a number of

measures which might help to alleviate some of the dif®culties which mothers face,

including the greater provision of accessible and affordable child care (Shearn 1998a),

and greater communication between employers and service providers (Kagan et al.

1998). There is a need for employers, especially employers in smaller and more locally

based work settings, to make greater concessions to working mothers (Brannen et al.

1994); for example, the creation of job-share schemes, creÁches, ¯exible hours and staff

retraining programmes. Without more ¯exible work practices (see Shearn 1998a),

mothers of children with intellectual disabilities, and many mothers in general, will

continue to be excluded unnecessarily from the workplace. Finally, the bene®t system

in the UK has long been seen to act against people with intellectual disabilities acces-



sing employment (Beyer et al. 1996; Brown 1997) and for people on welfare bene®ts

generally (Rothwell 1980). For mothers of disabled children, the bene®t system may

also act as a substantial disincentive to work (Kagan et al. 1998). The conditions of the

Invalid Carers Allowance (ICA) make it extremely dif®cult to work since mothers are

penalized if they earn over a certain amount or if they work for more than a set num-

ber of hours. Overall, the conditions of the ICA and social security need reform so that

maternal employment results in a higher family income not just improved emotional

well-being.

Maternal employment should be a central issue when considering the design and

development of support services. Although it appears that such aims are embedded

within recent policy [e.g., see the Carers (Recognition and Services) Act 1995; DoH

1995], service providers tend not to view carer employment as a feasible objective

(Twigg & Atkin 1994). Thus, although the Carers' Act offers carers an independent

assessment of their own needs, the moral context in which such discussions take place

may act against the self-expression of personal aspirations, and without encouragement

from professionals, such needs will remain private and latent. In addition, the implica-

tions for services must also go beyond a simple increase in the current provision of

support services. Within the UK over the last decade, a number of policies have been

implemented which have increased local authority support services for carers of people

with intellectual disabilities. For example, in Wales, where the study reported in the

present paper was conducted, the All-Wales Strategy for the Development of Services

for Mentally Handicapped People (Welsh Of®ce 1983) aimed to change and improve

services for people with intellectual disabilities and their families substantially over a

10-year period. However, as has been argued, the rationale of support services and the

development of precise outcomes have not been deliberated over (Todd & Shearn

1996b; Felce et al. 1998). As a result, the development of services has been based on

unhelpful assumptions of parental need. Services have been designed to provide

respite from caregiving rather than to enable parents to employ liberated time in a

more constructive and personally relevant ways. Little attention has been given to

what other activities parents might wish to conduct alongside their parental roles.

Such a dimension seems crucial to development of effective support (Todd & Shearn

1996b; Shearn & Todd 1997). From the data presented above, maternal employment

appears to be a salient issue for service development. It requires a model which views

carers as sharing the aspirations of many and as active citizens seeking ways of partici-

pating in the routines and rhythms of everyday life. Moreover, it must also be empha-

tically underlined that such desires are legitimate.

Acknowledgments

The authors wish to thank the mothers for their participation in this study, and for the

time and commitment which they gave. The advice and support of Drs Ian Shaw and

Andy Pithouse were instructive and also much appreciated.

Correspondence

Any correspondence should be directed to Julia Shearn, Welsh Centre for Learning Dis-

abilities, University of Wales College of Medicine, Meridian Court, North Road, Cardiff

CF14 3BG, UK.



References

Abbott P. (1982) Towards a social theory of mental handicap. PhD Thesis, Thames Polytechnic,London.

Aneshensel C. S., Pearlin L. I. & Schuler R. H. (1993) Stress, role captivity and the cessation of car-egiving. Journal of Health and Social Behavior 34, 54-70.

Ayer S. & Alaszewski A. (1984) Community Care and The Mentally Handicapped: Services for Mothersand their Mentally Handicapped Children. Croom Helm, London.

Baldwin S. & Twigg J. (1991) Women and community care. In: Women's Issues in Social Policy (edsM. McLean & D. Goves). Routledge, London.

Bartley M., Poppay J. & Lewis I. (1992) Domestic conditions, paid employment and women'sexperience of ill-health. Sociology of Health and Illness 14, 314±343.

Baruch G. K. & Barnett R. (1986) Role quality, multiple role involvement and psychological well-being in mid-life women. Journal of Personality and Social Psychology 51, 578±585.

Beresford B. (1994) Positively Parents. HMSO Publications, University of York, York.Beresford B. (1995) Expert Opinions: A National Survey of Parents Caring for a Severely Disabled Child.

Policy Press, Bristol.Beyer S., Goodere L. & Kilsby M. (1996) The Costs and Bene®ts of Supported Employment Agencies.

The Stationery Of®ce, London.Bielby D. (1992) Commitment to work and family. Annual Review of Sociology 18, 281±302.Birenbaum A. (1968) Non-institutionalized roles and role formation: a study of mothers of men-

tally retarded children. PhD Thesis, Columbia University, New York.Bradshaw J. & Lawton D. (1978) Tracing the cause of stress in families with handicapped children.

British Journal of Social Work 8, 181±192.Brannen J. & Moss P. (1991) Managing Mothers: Dual Earner Households after Maternity Leave.

Unwin Hyman, London.Brannen J. & Moss P. (1992) British households after maternity leave. In: Dual Earner Families (eds

S. Lewis, I. N. Dafna & H. Hootsmans). Sage Publications, London.Brannen J., Meszaros G. & Moss P. (1994) Employment and Family Life: A Review of Research in the

UK (1980±1994). Department of Employment, London.Bristol M. M., Gallagher J. J. & Schopler E. (1988) Mothers and fathers of young developmentally

and non disabled boys: adaptation and spousal support. Developmental Psychology 24, 441±451.Brody E. M., Kleban M. H., Johnsen P. T., Hoffman C. & Schoonover C. B. (1987) Work status and

parent care: a comparison of four groups of women. The Gerontologist 27, 201±208.Brown G. (1997) Wasted resources behind welfare to work. Viewpoint July (20), 8.Bryman A. (1988) Quantity and Quality in Social Research. Unwin Hyman, London.Callender C. (1992) Redundancy, unemployment and poverty. In: Women and Poverty in Britain in

the 1990s (eds C. Glendinning & J. Millar). Harvester Wheatsheaf, Brighton.Chamberlayne P. & King A. (1997) The biographical challenge of caring. Sociology of Health and Ill-

ness 5, 580±601.Crehan K. (1986) Women, work and the balancing act. In: Women, Work and Family in Britain and

Germany (eds T. S. Epstein, K. Crehan, A. Gerzer & J. Sass). Croom Helm, London.Davies K. (1990) Women, Time and the Weaving of the Strands of Everyday Life. Avebury, Aldershot.Department of Health (DoH) (1995) Carers (Recognition and Services) Act 1995. HMSO, London.Epstein T. S. (1986) Time management at work and at home. In: Women, Work and Family in Britain

and Germany (eds T. S. Epstein, K. Crehan, A. Gerzer & J. Sass). Croom Helm, London.Felce D., Grant G., Todd S., Ramcharan P., Beyer S., McGrath M., Perry P., Shearn J., Kilsby M., &

Lowe K. (1998) Towards a Full Life. Butterworth-Heinemann, Oxford.Freedman R. I., Litch®eld L. C. & War®eld M. E. (1995) Balancing work and family: perspectives

of parents of children with developmental disabilities. Families in Society: The Journal of Contem-porary Human Services 76, 507±514.

Gallimore R., Weisner T. S., Bernheimer L. P., Guthrie D. & Nihira K. (1993) Family responses toyoung children with developmental delays: accommodation activity in ecological and culturalcontext. American Journal on Mental Retardation 98, 185±206.

Geertz C. (1973) The Interpretation of Cultures: Selected Essays. Basic Books, NY.Glaser B. & Strauss A. (1967) The Discovery of Grounded Theory. Aldine, Chicago, IL.



Glendinning C. (1983) Unshared Care: Parents and their Disabled Children. Routledge and Kegan

Paul, London.

Glendinning C. (1992) Employment and community care: policies for the 1990s. Work Employment

and Society 6, 103±111.

Harris V. S. & McHale S. M. (1989) Family life problems, daily care giving activities and the psy-

chological well-being of mothers of mentally retarded children. American Journal on Mental

Retardation 94, 231±239.

Hautamaki A. (ed. ) (1996) Stress and Stressors and Factors Alleviating Strain Over the Life-Cycle ofParents of Children with Down Syndrome in Different Ecological Contexts. Proceedings of the10th World Congress of International Association for the Scienti®c Study of Intellectual Disability,

Helsinki, 1996.

Heaton J. (1999) The gaze and visibility of the carer. Sociology of Health and Illness 21, 759±778.

Hirst M. A. (1985) Young adults with disabilities: health, employment and ®nancial costs for

family carers. Child: Care, Health and Development 11, 291±307.

Higgs D. (1986) Unpaid work, housework and the work ethic. In: Women, Work and Family in Brit-

ain and Germany (eds T. S. Epstein, K. Crehan, A. Gerzer & J. Sass), pp. 179±185. Croom Helm,

London.

Hoffman L. W. (1974) Psychological factors. In: Working Mothers (eds L. W. Hoffman & F.I. Nye),

pp. 32±62. Jossey-Bass, San Francisco, CA.

Kagan C., Lewis S. & Heaton P. (1998) Caring to Work: Accounts of Working Parents of Disabled Chil-

dren. Family Policy Studies Centre, London.

Kiernan K. & Wicks M. (1990) Family Change and Future. Joseph Rowntree Foundation, York.

Laws J. L. (1979) The Second X: Sex Role and Social Role. Norton, NY.

McRae S. (1991) Occupational change over childbirth: evidence from a national survey. Sociology

25, 589±605.

McCraken G. (1988) The Long Interview. Sage Publications, London.

Moen P., Robinson J. & Dempster-McClain D. (1995) Caregiving and women's well-being: a life

course approach. Journal of Health and Social Behavior 36, 259±273.

Newell S. (1993) The superwoman syndrome: gender differences in attitudes towards equal

opportunities at work and towards domestic responsibilities at home. Work, Employment and

Society 7, 275±289.

Oakley A. (1982) Housewife. Penguin Books, Harmondsworth.

Oliver M. (1996) Understanding Disability. Macmillan, London.

OPCS (1993) The General Household Survey. HMSO, London.

Pahl J. & Quine L. (1987) Families with mentally handicapped children. In: Coping with Disorder in

the Family (ed. J. Orford). Croom Helm, London.

Parker G. (1990) With Due Care and Attention: A Review of the Literature on Informal Care. Family

Policy Studies Centre, London.

Pascall G. (1997) Women and the family in the British Welfare State: the Thatcher/Major legacy.

Social Policy and Administration 31, 290±305.

Qureshi H. (1993) Impact on families: young adults with learning disabilities who show challen-

ging behaviour. In: Research to Practice? Implications of Research on the Challenging Behaviour of

People with learning Disabilities (ed. C. Kiernan). BILD, Clevedon.

Ramcharan P. & Borland J. (1997) Preface. In: Empowerment in Everyday Life: Learning Disability

(eds P. Ramcharan, G. Roberts, G. Grant & J. Borland). Jessica Kingsley, London.

Ruddick S. (1980) Maternal thinking. Feminist Studies 6, 342±367.

Rothwell S. (1980) United Kingdom. In: Women Returning to Work (ed. A. M. Yohalem), pp. 160±

217. Frances Pinter, London.

Schur E. M. (1984) Labelling Women Deviant: Gender Stigma and Social Control. McGraw-Hill, NY.

Scott J., Alwin D. F. & Braun M. (1996) Generational changes in gender-role attitudes: Britain in a

cross-national perspective. Sociology 30, 471±492.

Selwyn J. T. (1990) Applying to adopt: the experience of rejection. MSc (Econ) Thesis, University

of Wales, Cardiff.

Shearn J. (1998a) Still at home: participation in paid employment of mothers of children with

learning disabilities. British Journal of Learning Disabilities 26, 100±104.

Shearn J. (1998b) Mothers and work: time for change. Llais 50, 7±10.



Shearn J. & Todd S. (1997) Parental work: an account of the day to day activities of parents ofadults with learning disabilities. Journal of Intellectual Disability Research 41, 285±301.

Simon R. W. (1997) The meanings individuals attach to role identities and their implications formental health. Journal of Health and Social Behavior 38, 256±274.

Skaff M. M. & Pearlin L. I. (1992) Caregiving; role engulfment and the loss of self. The Gerontologist32, 656±664.

Sloper P., Knussen C., Turner S. & Cunningham C. C. (1991) Factors related to stress and satisfac-tion with life in families of children with Down's syndrome. Journal of Child Psychology and Psy-chiatry 32, 655±676.

Sloper P. & Turner S. (1993) Risk and resistance factors in the adaptation of parents of childrenwith severe disability. Journal of Child Psychiatry 34, 167±188.

Souza A. (1997) Everything you ever wanted to know about Down's Syndrome but never both-ered to ask. In: Empowerment in Everyday Life: Learning Disability (eds P. Ramcharan, G. Roberts,G. Grant & J. Borland), pp. 3±14. Jessica Kingsley, London.

Stephens M. A. P., Franks M. M. & Atienza A. A. (1997) Where two roles intersect: spilloverbetween parent care and employment. Psychology and Aging 12, 30±37.

Stephens M. A. P., Franks M. M. & Townsend A. L. (1994) Stress and rewards in women's multi-ple roles: the case of women in the middle. Psychology and Aging 9, 54±52.

Stephens M. A. & Townsend A. L. (1997) Stress of parent care: positive and negative effects ofwomen's other roles. Psychology and Aging 12, 376±386.

Strauss A., Fagerhaugh S., Suczek B. & Weiner C. (1985) The Social Organisation of Medical Work.University of Chicago Press, Chicago, IL.

Stull D. E., Kosloski K. & Kercher K. (1994) Caregiver burden and generic well-being: oppositesides of the same coin. The Gerontologist 34, 88±94.

Thoits P. A. (1991) On merging identity theory and stress research. Social Psychology Quarterly 54,101±112.

Thornton A. (1989) Changing attitudes towards family issues in the United States. Journal of Mar-riage and the Family 51, 873±893.

Todd S. & Jones S. (1999) Lives in the Balance: The Experiences of Parents of People with Learning Dis-abilities during their Middle Years. Welsh Centre for Learning Disabilities, Cardiff.

Todd S., Shearn J., Beyer S. & Felce D. (1993) Careers in caring: the changing situations of parentscaring for an offspring with learning dif®culties. Irish Journal of Psychology 14, 130±153.

Todd S. & Shearn J. (1996a) Struggles with time: the careers of parents of adult sons and daugh-ters with learning disabilities. Disability and Society 11, 379±401.

Todd S. & Shearn J. (1996b) Time and the person: the impact of support services on the lives ofparents of adults with learning disabilities. Journal of Applied Research in Intellectual Disabilities 9,40±60.

Twigg J. & Atkin K. (1994) Carers Perceived: Policy, Practice in Informal Care. Open University Press,Buckingham.

Walker L. S., Ortiz-Valdes J. A. & Newbrough J. R. (1989) The role of maternal employment anddepression in the psychological adjustment of chronically ill, mentally retarded and well chil-dren. Journal of Paediatric Psychology 14, 371±387.

Welsh Of®ce (1983) The All-Wales Strategy for the Development of Services for Mentally HandicappedPeople. Welsh Of®ce, Cardiff.

Wheaton B. (1990) Life transitions, role histories and mental health. American Sociological Review55, 281±288.

Zerubavel E. (1981) Hidden Rhythms. University of California Press, Berkeley, CA.



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