Power, Andrew (2008) Caring for independent lives: geographies of caring for young adults
with intellectual disabilities. Social Science & Medicine, 67, (5), 834-843.
This paper engages with the emerging disciplinary clash between ‘care’ and ‘independence’
within disability studies by examining the geography of home care for young adults with
intellectual disabilities. The care system as a whole is viewed as central to disablist structures
within disability studies (see Thomas, C. (2007). Sociologies of disability and illness:
Contested ideas in disability studies and medical sociology. Hampshire: Palgrave
Macmillan.). However, despite the theorisation of dependency as being in antipathy to the
goals of the disability movement, caregiving at home still continues to dominate community
care. The paper attempts to address how family carers are ‘caught-in-the-middle’ between
their ‘duty’ to care and at the same time, perpetuating dependency; the reality being that
parents have to deal with issues of being overprotective and confronting various social
assumptions about disability. It examines the narratives from 25 family caregivers in Ireland
who provide personal assistance to young adults with intellectual disabilities.
The informal care sector –made upmostly of family caregivers – has for a long time been the
largest source of care for adults with intellectual disabilities (ID) (referred to as ‘learning
disability’ in social policy documents and in popular discourse in the UK), even during the
‘institutional era’, albeit in the shadow of the asylum (Metzel, 2005; Thomas, 2007). In any
case, the experience of separation and isolation has continued since the asylums closed and
people with ID moved into nearby communities (Dear & Wolch, 1987). People with IDhave
since faced newentanglements of inclusion/ exclusion in the community between ‘special
schools’,‘special’ transport, sheltered and group housing on one hand, and mainstream
schools, accommodation and types of employment on the other (Hall, 2005).
The definition of an ID is the possession of the following features: intellectual functioning is
significantly below average; there are difficulties with everyday life skills; and the condition
is present from early childhood. It is marked by lack of understanding and communication
(NAMHI, 2004). While definitions of ID may provide some insight into the impairment
itself, it is important that these definitions do not overly label the person and that generalised
assumptions are not made. People with ID are a group regarded as being particularly
vulnerable to dependency creation on one hand (Swain, French, & Cameron, 2003) yet can be
highly independent on the other; depending on the level and type of advocacy provided
(Lemon & Lemon, 2003).
The aim of this paper is to conduct an in-depth examination of the daily geographies of carers
of young adult children with ID in order to explicate the ways in which they negotiate
providing, and are challenged by constructions of, independent living. Independent living is
defined as achieving control, choice and self-governance in one’s life (Morris, 1993). The
paper uses what Hall (2005) refers to as the socio-spatial ‘fine print’ of the everyday lives of
carers of people with ID to question the assumption that this variant of community care
guarantees independence and autonomy for the young adult with an ID. It attempts to
illustrate the ways in which both social and spatial life shape carers’ abilities to provide
opportunities for independent living. The paper thus briefly documents the wide body of
literature on ID, then addresses work within disability studies on the notion of a disciplinary
clash between care and dependency (Thomas, 2007). Finally, it examines the recent
geographical work on ID, and proposes that a health geography perspective offers important
insights to this debate, by focusing on the daily geographies of family caregivers.
The literature review is followed by a detailed exploration of the interconnections between
the physical, social and spatial experiences of carers in order to tease out how carers are
‘caught-in-the-middle’ within this debate. The analysis draws on qualitative data from 25
interviews with family caregivers of young adults aged between 18 and 30 years with ID in
Intellectual disability (ID) (and the caregiving of people with ID) has a long tradition of
theoretical and empirical research. One particular project of great significance for people with
ID has been Wolfensberger’s (1983) concept of ‘normalisation’, otherwise known as ‘social
role valorisation’ (SRV). SRV is defined as the creation, support and defence of socially
valued roles for people who risk devaluation (Dowse, 2001). This principle, however, served
to accord professionals ‘‘a central role in interpreting disabled people’s socially valued roles
and activities’’ (Barnes, Mercer, & Shakespeare, 1999: 74). In terms of family perspectives,
Birenbaum (1971) suggested that family coping becomes more difficult as the child with ID
ages and as families face support network shrinkage over time. Similarly, there has been a
focus on the health-related stress and depressive symptoms experienced by caregiving
mothers of adults with ID (Pruchno & Meeks, 2004). Work has also been done on coping
strategies of aging mothers of adults with mental retardation (Seltzer, Greenberg, & Krauss,
1995). An ‘adaptation’ hypothesis has suggested that people adjust to caregiving over time,
and acquire skills and competencies which help them to cope better, even when their own
support networks may indeed be more depleted (Seltzer & Heller, 1997).
Despite the breadth of the ID literature, there have been strong calls that this group has been
ignored by broader discussions on disability, in particular, the social model of disability. For
example, Chappell (1997) makes the plea that writers in the disability movement keep the
question of learning difficulty in their minds. Much of the subsequent work on ID in
mainstream disability literature has been on how the social model has failed to satisfy people
with ID who feel themselves to be excluded by definition (McClimens, 2003). Dowse (2001)
goes on to examine why the disability movement’s promotion of a strong disabled identity
may be difficult to achieve for all its constituents, particularly people with ID. She points out
they may have been better served by their own political collective identity (self advocacy in
the UK), as well as considering that ID is not a unitary or homogenous category of
impairment in itself. She also acknowledges some people with ID will have cognitive
limitations which curtail a broader awareness of the experience of oppression as common to
all people with impairments.
As this specific ID and caregiving literature developed, research on ‘care’ more generally has
met a lot of resistance from the disability studies literature, which has been described as
‘ideological dynamite’ (Oliver & Barnes, 1998). First of all, ‘care’ has been for a long time
synonymous with health/medical care and the medicalisation of disability/ impairment, which
led to the institutionalisation of people with ID (Metzel, 2005). Since then, with the move
away from care in large institutional environments, the concept of community care has been
viewed as central to the process of disablism in disability studies (Thomas, 2007). Disablism
here refers to a term introduced by Abberley (1987), meaning the social beliefs and actions
that oppress/exclude/disadvantage people with impairments. It has been argued that home
care can contribute to this process of disablism by impeding the chances of the person with
ID achieving the fundamental principles of independent living; control, choice and self-
governance (Morris, 1993).
As a reaction to the persistence of disablism within new forms of care, writers such as Oliver
and Barnes (1998) have argued that, ‘‘constructing the category carer and developing policies
in respect of this group has neither enabled disabled people to become independent nor freed
other family members from their ‘caring’ duties’’ (Oliver & Barnes, 1998). Indeed, Twigg
and Atkin (1994) even went as far as suggesting that they may be seen as part of the problem
as well as part of the solution. This arose as a result of caregiving research both assuming the
need for ‘care’ as self-evident (thus re-enforcing the notion of dependence) and ignoring the
disabling effects their ‘duty’ to care can have on the individual with the impairment.
While this debate has flourished in disability studies, more recently, geographers have turned
their attention to ID and have begun to ask questions about the role of space in understanding
dependency which offer important insights into the debate (see Hall, 2005; Hall & Kearns,
2001; Metzel, 2005). This area of study gathered pace with Hall and Kearns’ (2001) article
on making space forthe ‘intellectual’ in geographies of disability and a subsequent special
section on the geographies of ID in Health and Place (2005), documenting their position ‘off
the map’ (Smith, 2005) and being ‘outside the participatory mainstream’ (Philo & Metzel,
Of particular relevance to the issue of dependency has been firstly Metzel’s (2005) work on
the extent that people with ID are still socially and economically controlled in the community
by intensive regulation of funding and services, thus leading to ghettoisation and segregation;
thereby contributing to the experience of living within an ‘asylum without walls’ (Dear &
Wolch, 1987). Secondly, Hall’s (2005) work on the entangled geographies of social
exclusion/inclusion for people with learning disabilities has contributed a nuanced account to
our understanding of places of exclusion and inclusion. He examines how seeming places of
inclusion – sites of paid employment and independent living – can be spaces of exclusion.
Similarly, apparent places of exclusion – sheltered workshops and care homes – can often
make the person with ID feel more included.
This recent literature has shown that a health geography perspective can advance our
knowledge and understanding of the experience of carers of young adults with ID, by
focusing on the daily geographies of the caregiving situation.
This paper builds on this research and offers a unique addition to both the geographical and
disability studies literature on care by attempting to unpack the notions of dependency and
informal caregiving through the use of a socio-geographical perspective. In particular, the
paper examines the interplay between everyday social experiences and space within the local
caring nexus in order to try and gain what Sibley (1998: 119) calls a more ‘nuanced’ account
of the tensions between care and dependency.
In order to determine the experiences of carers at the local scale, 25 semi-structured
interviews were conducted with people who identified themselves as family caregivers
looking after a young adult with ID (18–30 years) in North County Dublin and County
Kildare. These are two suburban ‘commuter belt’ areas of moderate affluence outside Dublin
city. The majority of carers in the study are women, thus reflecting the gender divide in
informal caregiving (Central Statistics Office, 2004). The predominant impairment of the
care recipient is Down Syndrome (followed by moderate autism), which reflects the fact that
this is the most common form of ID.
Two strategies were followed to gain access to the participants. The first strategy was to use
media advertisements in the local press asking for respondents. The second strategy was to
provide local voluntary groups with information on the project, including the research
questions and a contact telephone number, and let carers who were interested in participating
make contact. The questions provided enabled them to get comfortable with the idea of
approaching the researcher. Burnard and Morrison (1994) maintain that a full and
comprehensive explanation about the research is likely to encourage people to participate in
the study. Although the second strategy proved a very slow process of gaining respondents, it
worked out as more effective in the long-run as very few carers came forward after the
advertisements were printed.
Because first contact was made by the participants, the ethical guidelines were outlined prior
to the commencement of each interview. Often carers spoke openly and freely about intimate
issues and experiences of caregiving. Therefore, the anonymity of those who participated in
the interviews was guaranteed. It was also made clear that the respondents had the right to
expect that any information they felt too sensitive or revealing would be treated in
All the interviews were carried out by the author and lasted at least an hour. All but three of
the interviews took place in the caregivers’ homes, with the remainder in a local Down’s
Syndrome centre, as given the nature of caregiving there was a need to be as flexible as
possible. The interview questions were divided into two themes:
The first involved a group of questions relating to their socio-spatial experiences of
caregiving in the home and in public. The second focused on their experiences and
perceptions of accessing and using services. The approach taken did not assume the need for
care to be immediately self-evident and also challenged carers to reflect on whether they felt
they ameliorated or created dependency. The questions allowed participants to talk about
their personal attitudes, beliefs, values and perceptions.
Data were typed and then analysed using the NUD-IST computer package to help manage the
large volume of data. This meant that data from the transcripts were placed into
distinguishable categories, then later refined by subcategorising databits in order to
interweave related categories (Kitchin & Tate, 2000). The broad categories were arrived at
with a prior knowledge from the literature of the complexity of the relationship between
‘carer’ and ‘cared-for’ and the contested nature of dependency. The layout of the presentation
of findings in this paper resembles particular classifications regarding carers’ social and
spatial experiences. Inevitably, throughout the study, disparities existed between individual
abilities, tolerance levels, values and approaches to caring. Nonetheless, common experiences
and opinions did emerge. This paper presents experiences and opinions that were shared by
the majority, however, throughout the text I have referred to ‘‘some’’ or ‘‘many’’ caregivers,
in order to make clear the level of shared opinion.
Experiences of caregiving
The following section draws on the findings of the 25 interviews with family carers, looking
at how the impairment intermeshes with the effects of disablism in the case of young adults
with ID and their carers. The geographical outcomes of both are examined in more detail in
the later section on daily geographies.
In the case of raising a person with ID from childhood to adulthood the tasks that are
generally made to be selfevident were often inherently non-technical. Although carers of
those with ID had fewer physical tasks than those providing personal assistance to someone
with a physical disability (such as help with lifting, dressing, eating), participants felt that it
was the long hours minding and attending to the person which caused physical exhaustion
and the limitations on their freedom.
Whilst many carers continuously supervised the person, perhaps more difficult and tiring,
however, was the active motivation constantly required to ‘promote the independence’ of the
person. Carers felt they were trapped in this instance between providing personal assistance
and at the same time, trying not to perpetuate dependency:
You want the person with the disability to be independent. You don’t want them to be
institutionalised [after you’re gone]. He’s not that independent, I make him go places. We’d
say we’re going to the football match, c’mon get your coat, whereas you could sit at home
and do nothing. (R13, Feb. 2004)
This acknowledgement that independence needed to be ‘assisted’ is itself an interesting point
and will be addressed further.
Many of the carers talked about being regularly exhausted due to the extra rigor of keeping
the person stimulated and occupied in order to encourage their independence. This was more
acute for carers of adults with ID who were out of the school cycle and either used some form
of day centre provided by parents, or were trying to negotiate finding a job. This intimate task
featured largely in the qualitative experience of the carers’ narratives. This was very different
to other forms of disability, in that someone with a physical disability can try to motivate
themselves to overcome their barriers. More often, the parent with an intellectually impaired
son or daughter had to play the role of advocate and provide the motivation:
Once [Michael] came along, it justwasn’t possible [to return to work] because of the path we
chose with him. I was the one providing all the information to the school, helping with the
homework every day. It was a big commitment, even researching how to teach, but it meant a
commitment every single day and it meant being there every day. It was time consuming, but
it was also very draining emotionally because people would always say to you, ‘ah he’s grand
now, but what are you going to do when he’s 7 or 8, he might get into the primary school but
what happens when he gets there’? And then when he got through primary school, ‘you don’t
think he’s going to go through exams, do you?’ [Laughs]. But it wasn’t about exams really. It
was about being part of the community. It was about knowing people in the community. I
mean, his whole social life is around the people he grew up with. So that’s what stopped me
from working. (R9, Nov. 2003)
With this level of dedication, it was not surprising that most carers talked about being
physically tired by the long days involved in meeting this commitment at home and
participating in local support groups. The emotional nature of this type of care work was
regarded as more important therefore, than any physical tasks. This was similar to Wiles
(2003) findings for carers of frail elderly people. What was often instilled in families from
community care workerswas that they had to provide the most amount of care in terms of
time and effort possible, and only when that resourcewas exhausted, intervention occurred.
Professionals and service providers often affected decision making by parents, particularly in
their ability to ‘let go’ of holding on to the control of the life of the person with ID:
It’s all up to the parent, who’s starting off in life with this baby and may not know what they
will have to do when the child is 6 months. And then at 6 months, somebody says did you get
a hearing test? And of course, it takes another 3 months to get that specialist. So right from
that stage, nobody is saying, ‘look, your child will need this and we’ll organise it for you’. I
think that’s the saddest thing for people starting off. Nowadays – their dreams are taken
away. There’s no reason nowadays why somebody with DS can’t have a very fulfilled
independent life. As a parent, you have to see [check] yourself a lot of the time and say ok, I
have to let go. And letting go is difficult. But that isn’t something that the service providers
instil in families. (R16, Feb. 2004)
This unsupportive approach by service providers is bound to colour the carers’ judgement on
how they think and go about their tasks. Indeed, it hardly encourages parents to think more
positively about promoting independence. When coupled with a lack of alternatives, carers
felt they had little choice but to take control over the development of the young person’s life.
Therefore, the ‘taken for granted’ daily physical activities generally did not fill the carers’
day in this instance. Instead, it was the non-technical hard-toclassify tasks such as motivating,
policing and attending to the person that pervaded their physical experiences.
Risk of overprotecting
Although enhancing independence was an important element of caregivers’ narratives,
overprotection on the part of carerswas also a key issue whichwas raised. It is seldom
addressed in caregiver literature, and is a key psychological issue for parents and the
development of the child into adulthood. In the interviews, it was not uncommon for parents
of adults with ID to be ill-prepared in dealing with issues around encouraging independence
and becoming overprotective:
Do you think some parents are over-protective?
Oh yeah I could fall into that category very easilymyself. I would really. I try not to. (R17,
The same parent, despite admitting she was aware of the risk of being overprotective, later
admitted that she often struggled with overprotection herself. The following quote shows this
ongoing exchange felt by most carers of wanting the young adult to be independent but at the
same time, bound in the cycle of overprotection:
I just want her to be able to look after herself. She can do it. She had her bags one day and
was late getting the school bus home from town. No word from her. She hadn’t rang. She
pulled into the taxi rank and got a lift home. When she saw my face, she said ‘Mam, don’t
make a fuss’.My own fears?We’re very attached. Dangerously attached. She worries about
me. It’s ok of course but I don’t know how you detach [yourself]. That’s a silly question. I
really don’t know how to separate us. (R17, Feb. 2004)
One of the main reasons for being so attached and fearful appeared to be the lack of
professional counseling and social work that could encourage parents to gauge what degree
of freedom would be appropriate for their sons or daughters to attain. The lack of support
services more generally left parents susceptible to closing off potential occasions where the
young adult child could have more control, choice and self-governance and tended to rely on
ever smaller and closer networks:
What happens with the family then, is they become nearly more protective. Because if a
service provider is saying, ‘oh god, we couldn’t mind him, he’d need three people’, then
they’re not even going to ask their relatives to take him for a weekend. Because they’re
saying well if they can’t, our sister surely can’t. So it does colour the whole thinking on the
situation. (R16, Feb. 2004)
While most just want their disabled son or daughter to be able to look after themselves, at the
same time, some found it quite shocking for them to exhibit much more independence than
they thought possible. It is usual for parents of non-disabled children to learn to facilitate
their emerging needs and desires as they develop. However, the presence of ID can
compound this parenting skill. Often parents made all decisions, instead of trying to facilitate
the choices of the disabled person. This became even more acute when dealing with the shift
from adolescence to adulthood and meeting the norms and desires of young adults with ID as
they became aware of their own sexuality and changing bodies:
A lot of parents make a lot of decisions for people, which is wrong. A lot of parents don’t
believe in people with learning disabilities having relationships. Because some form
relationships, not in the sense of a sexual thing, but as a friendship thing. But parents get all
bothered all of a sudden about these things. But it’s fine. Like you’ll read or hear about
people making decisions for other people which is wrong. You should facilitate them. (R2,
This overprotection not only came fromthe physical need to shelter the person; but it also
arose from social norms – which assume the full-dependence of a disabled person – feeding
into expectations of parental practices. Because of this, eventhosewhocouldleave the
personalone talked about how they have a bad conscience if anything should happen.
Daily geographies: coping with stigma
While the experiences in the previous section were largely psychological, they had significant
consequences on the carers’ daily geographies, meaning the places, routes and paths in which
carers and young adults with ID live (Crooks, 2006), as well as their interactions and
experiences with(in) these places. Documenting the everday lives of carers of young adults
with ID in mainstream society reveals a complex geography of exclusion and inclusion (Hall,
2005). In this complex geography, coping with stigma can have profound effects on carers’
ability to promote independence on one hand, and grapple with overprotection on the other.
Both problem-focused and emotion-focused coping strategies appeared to mutually exist
depending on the particular people, places and circumstances involved. Problem-focused
strategies are used in situations in which the individual feels a sense of personal efficacy and
perceives the possibility for making positive change, whereas emotion-focused strategies are
used in situations where there are high levels of uncertainty and the individual perceives few
possibilities for effective beneficial change (Seltzer et al., 1995).
The social impacts of caregiving are compounded by the physical proximity of the care
recipient to the carer throughout life. Proximity is a key theme of geographic research on
informal caregiving (Wiles, 2003). Difficulties can arise in the relationship between the carer
and the cared-for due to the close proximity of co-existence. There is a risk that the lives of
people in a caring relationship might become so inextricably entwined that one individual can
have no independence of the other; either at the scale of public space, the homespace, or the
in-between hidden social spaces such as parent-support groups or neighbours’ homes.
The effects of having responsibility for promoting the autonomy and independence on the
carers’ mobility were an important element of the participants’ narratives. Many felt that their
mobility, as well as that of the care recipient, was considerably restricted in the local
community. In order to better understand the experience of limited mobility, it is important to
examine the complex processes of negotiating public space for young adults with ID, and by
direct result of their close proximity, their carers. Carers argued that in everyday public
spaces, non-disabled people responded to the care recipient and to themselves differently.
The sites that were generally identified were busy places, where non-disabled people had less
time to be patient. Public reactions tended to be characterised by odd looks, uncomfortable
body language and verbal comments, which combined to give a strong sense of showing they
were ‘out of place’:
We’re becoming a lot harsher, especially in Dublin. I notice when I go into a shop or
something.there isn’t as much tolerance anymore.with fumbling with their change, or if
somebody can’t manage something. (R25, Feb. 2004)
In describing many awkward instances with ablebodied people, carers regularly had to face
people in hybrid states of awkwardness, confusion, and distraction. Referring to the words of
Thomson, in talking about an encounter with a person with a visible disability, ‘‘it almost
always dominates and skews the [normate’s] process of sorting out perceptions and forming a
reaction’’ (Thomson, 1997). In the words of one of the carers:
Well you’d come across a few barriers now when you’d go into a few companies with a child
like [Sharon] that has Down’s Syndrome. They’re kinda very uneasy.They don’t expect her
to be as normal as she is. Do you know, they look at her, they know she’s Downs, but they
kinda treat her like a child, even though she’s an adult. And she doesn’t like that at all. She
likes her drop of Bailey’s. And people are shocked then. People have asked, ‘And would she
be all right?’. I said, ‘of course she’d be alright after a couple of Baileys. But a lot of people
would kind of crouch away from her. And even little kids would stare. You don’t mind little
children but adults should understand it a little bit better. (R4, Nov. 2003)
Although the awkward state of the able-bodied person is generally transient, the fact that
carers had to face these looks and taunts continuously made it difficult for them to deal with
the public in a way they perhaps would have, without the person with the disability. In this
space, due to the close proximity of the care recipient, carers mentioned that they were
always aware of codes of behaviour or attitudes regarding expected social norms in particular
public places, hence calling into question their ability to presume their able-bodiedness, as
others may unconsciously do:
You have to be aware of people’s needs as well, what they want. (R3, Nov. 2003)
You have to be sensitive to everybody’s needs.You have to be fairly tuned in all around.
(R25, Feb. 2004)
These sentiments highlight the way many of the participants felt in lived space. According to
Dear and Wolch (1987), the production of difference is characterised as necessarily a social
and spatial process, which allows the self to be partitioned from the other. Consequently,
there is, as Lefebvre (1991) argues, an immediate relationship between the living body and its
occupation of space (cited in Hawkesworth, 2001: 300). From this viewpoint, carers had to
accept the disabling daily space in which they occupied. Living within this spatiality often
exposed the carer to the stigma associated with disability as well as societies’ understanding
of a ‘carer identity’.
This experience of embodying the stigma of the care recipient among carers resonates with
Goffman’s (1963) idea of a courtesy stigma (a stigma acquired as a result of being related to
a person with a stigma) (Birenbaum, 1992). This has been namely used for persons who are;
‘‘[normal] but whose special situation has made them intimately privy to the secret life of the
stigmatised individual and sympathetic with it’’ (Angermeyer, Schulze, & Dietrich, 2003:
593). From this viewpoint, the loyal caring parent of the person with ID is obliged to share
some of the discredit of the stigmatised person to whom they are related. Furthermore, the
parent is obliged to assume the management control of stigma.
Confronting stigma and its associated exclusionary reactions by the public was a major
source of frustration for carers who spent large amounts of time and emotional energy in
trying to promote the independence of their child with ID. Some carers had developed
effective problem focused coping strategies in dealing with these public responses to
disability, such as putting the responsibility of behaving ‘normally’ on the public:
People would be looking at him. Because he looks normal. I don’t care anymore. It’s funny
their reaction when you say ‘he’s special needs’. They back off. I’m always a great believer
in telling people if he’s screaming or shouting. The doctor told me, ‘if you’re under stress and
he’s carrying on, just turn around and say, he’s ‘special needs’. It takes it all off you. Then
it’s on them on how to react. (R3, Sept. 2003)
Practical coping strategies like this were highlighted in many of the interviews, particularly as
the carers had now at least 18 years of experience in caregiving for their adult child.
However, therewas also evidence of emotion-focused coping. This included denial,
behavioral disengagement, and mental disengagement where many struggled with ‘being a
I hated this admission; ‘‘my child is handicapped’’. It’s the admission. It was saying, ‘oh do I
have to do this?’ We were lucky [Gill] was healthy. But for some reason, when she was 16, I
just didn’t want to tell the world my child is officially handicapped.I didn’t want that. It is
like an identity being forced upon you. That’s exactly it. I was avoiding it. I just didn’t want
it. Whether you like it or not, you’re forced into this relationship with health and social
services. (R17, Feb. 2004)
This reaction was consistent with Seltzer et al.’s (1995) finding of emotion-focused coping
strategies for ageing mothers with adults with ID. Consequently, there was at times a strong
sense of guilt, which arose as a result of not living up to the notion of being a ‘good’ carer in
public life. This guilt was evident when some carers revealed they sometimes ‘‘wanted to
wish it all away’’ (R3, Feb. 2004). Such responses made it clear that the social attribution of
stigma and a carer’s identity were closely inter-related.
It was clear from the above section that the carers’ daily space and focus of their activities
were largely restricted to the needs of the recipient. Some carers were very conscious of the
narrowness of their spatial lives, while others appeared to have adapted or resigned
themselves to it. This often resulted in a carer being tied to the home, with a feeling that there
had to be someone in the house at all times to look after the person. The lack of home help
compounded this problem:
I still am very tied to the home. Because I can’t have a job. I could never have had a job after
[Cliona]. I wouldn’t like to leave her too long. She’s never been away on her own, without
me. So she’s at home with mam, all the rest of the time. And nobody else added. No other
help-aid. We can’t get them. It’s available to be there but we can’t get them. And it’s very
hard to get volunteer people to take the job. For some reason I don’t know. But even say,
with neighbours.If anything goes wrong with [Cliona], I may ring the emergency services.
I’ve nobody here. I’m in the middle of the country. Where would you get anyone around here
all day – they’re all working. (R19, Feb. 2004)
Many carers shared a similar sense of isolation from being tied to the home, having nobody
to talk to or nobody to listen to them. Clearly, this sense of isolationwas enhanced by a lack
of social resources, such as having access to good community care services as well as
supportive networks of family and friends. These were important factors in carers’ ability to
enhance mobility and to promote independence. More often this proved a cause for
frustration and extra planning, however, due to the reactionary ‘crisis management’ nature of
community care services.
Whether being tied to the home was a function of caregiving or a coping strategy varied a
great deal depending on the severity of impairment; at the severe end of the spectrum, being
tied to the home was explained largely as a function of caregiving, whereas at the mild end,
this appeared to be more of an emotion-focused coping strategy of not wanting to engage
with public life. In the latter case, there was little physical reason for being tied to the home;
rather it was a way of coping with feelings of discomfort and being stigmatised in places
outside of the home.
Geographically, the limits on a carer’s home range led to a shifting meaning of the
homespace from being relatively carefree to a careful monitoring of movement and traffic
and noise (Yantzi, Rosenberg, & McKeever, 2007). Some carers felt uncomfortable inviting
neighbours, friends or other visitors inside the house because of the behaviour of their
disabled adult. One of the most significant changes, according to Wiles (2003) was that the
homespace is no longer a place for social entertaining. According to Milligan (2000),
domestic space can therefore be seen to have merged with a space for carrying out caring
duties to become a ‘site of caring’, thus resulting in an institutionalisation of homespace.
Evidence of the changed social meaning of the home was identified by the majority of the
participants, who argued that having strict routines and having to cope with outside disablist
assumptions often had severe implications on the carer inside the home. Space and scale were
therefore important issues in understanding the caring situation, in that there was a scalar
continuity of coping routines that extended from the larger public sphere to within the
contained homespace adopted by caregivers.
Carers often did not have the energy to organise and entertain, or else it was too difficult for
the recipient or the guests. This was more common with the presence of an adult with a
moderate form of autism in the home for example:
Even visitors to the house is a big no no. Because he just goes crazy with new people. He gets
very excitable. Not even new people. Even the grandparents. He doesn’t like people invading
his territory. I suppose he kinda wants us for himself. But he’s kinda hyper. For instance, if
he was here, we couldn’t sit here and talk. He’d be trying to push the coffee away. So you
couldn’t have a baby around. I suppose he just wants all the attention himself. (R3, Sept.
This relationship between comfortable ‘norms’ of behaviour and society often affected who
came and went from the household. As most carers therefore argued, the rhythms and
routines of the home were often re-organised to comfort the care recipient, including social
activities, recreation, and administration. This reflected a complex conjoining of the physical
behaviour of the care recipient and social relations which produced this specific meaning of
the home for the carer. The geographies of the caregiving situation were therefore connected
and mutually constituted by the physical and psychological aspects of care. Altogether then,
the private space of the homewas a very different space, than that of an able-bodied family,
often characterised by isolation, loneliness and imbued with different meanings.
Consequently, the carer’s potential geography was greatly limited. One of the closing
sentiments made by one of the participants was: ‘‘Freedom.you haven’t got the freedom’’
(R25, Feb. 2004).
Hidden social geographies
In-between mainstream public space and the homespace, there appeared to be a complex
mapping out of safe places and comfort zones by carers. Most carers had developed strict
routines as a problem-focused coping strategy around where and when to go to these different
places. According to Wiles (2003), routines help to ensure the comfort of recipients through
structure, help caregivers manage the demands of their day, and help mitigate the stress of
crises. The carers appeared to display various forms of regulation of the care recipient’s
everyday space as well as self-regulation of their own space, where the tension between care
and dependency mentioned above also fed into decisions about their everyday geography:
Does that mean you’re very tied to the home?
Ah yeah. Yeah. We can’t really bring him to a lot of places. He gets fed up and he starts
crying and [gets] agitated, with everything. You couldn’t bring him to the pictures. We have
to lock all the doors. Or else bring him everywhere. I suppose I’ve got used to it now. I mean,
he couldn’t go out there and play out there with the other children. Oh, he’d just keep going.
Or else he’d go with anyone. He trusts everybody. (R3, Sept. 2003)
As a result, breaks from caregiving tended to be shorter and were characterised by ‘popping
down to the shops’ or going for a coffee in the town. Instead of being able to head off
somewhere, many had to organise and maintain a routine, only being allowed to go
somewhere when organised in advance:
Yes you’d have to have a routine. Everything has to be planned and then sometimes you can’t
go. It might depend on the way [Orla] is. I mean, your lifestyle changes. If you want to go
away, you have to do way more planning with regard to getting away. If you go shopping for
her clothes, I need someone to sit with her while I pick out her style, then two people to try
on the clothes with her. It takes two people. You can’t shop for her with one person. It’s
impossible. (R21, Sept. 2003)
Having to invest time in organising and regulating public ‘outings’ tended to assert the value
of the ‘intimate social and spatial worlds’ (Parr, 2000) developed amongst people with ID
and their carers, meaning the complex hidden social geographies which many people with ID
live out on an everyday basis.
Both the carer and care recipient therefore had developed complex mental ‘maps’ of daily
life. Most had very straightforward consistent guidelines and routines about places which
were either ‘out-of-bounds’ or ‘comfort zones’ such as parent’s groups or homes of
neighbours who also had a child with a disability. This led to increased marginalisation into
ever smaller spaces, on the ‘outer fringes of the daily round’ (Laws & Radford, 1998: 99).
Consequently, key sites were agreed upon and etched out in their maps of use where both felt
comfortable in terms of attitudinal repose. In the words of one carer:
In reality what you need to do is develop extended families as such. For example, if you had a
friendship, or relationship with [James] or a person with a disability and you found it
comfortable for [James] to come to you. And you also found it comfortable to go to them. So
they’re looked upon as a visitor or friend. And I think that’s the model to develop. (R3, Nov.
This example was quite common for carers, where they found that taking the care recipient to
other people’s homes, where both could feel comfortable, worked well for their own caring
position. Day care centres organised by other parents were also used, and provided a social
outlet for the carer. In these places, the person with ID could learn to assert their own needs
and identities rather than cope with everyday exclusionary experiences. These differed from
public respite centres which appeared to have negative effects on the mentality and
temperament of the person with ID due to the lack of the social element of support.
It was clear from looking at carers’ lives, that their caregiving situation had strong spatial
outcomes, as seen in the restrictions on their daily geographies. This was seen at three spatial
scales; public space, the homespace, and the in-between hidden spaces. Carers’ experiences
of getting outside the household and using public spaces revealed how the caring experience
is one that is embedded in relationships with social ‘norms’ of behaviour. This involved
dealing with the stigmatised representation of the disabled body in society and having to
challenge the barriers caused by these social attitudes in mainstream and professional circles.
This aspect of care work was just as important, if not more so, than the physical tasks, as
carers were acutely self-conscious of issues of overprotection. The experience and outcome
of broader social, attitudinal and environmental circumstances, beyond the immediate
confines of the home were common, which often caused the person to ‘stay-at-home’, rarely
venturing beyond the front door. This proved quite similar to the experiences of people with
physical disabilities living at home (e.g., Imrie, 2004; Morris, 2001), However, in contrast,
where living in the home for a physically impaired personis achieved by adapting the design
that reflects the primacy of non-impaired bodies, the experience of living comfortably at
home with somebody with ID is achieved through rhythms and routines typically designed to
mood of the person with ID. In an effort to get out of the house, and at the same time shelter
themselves from exclusionary reactions, carers routinely used in-between places such as
parent-support groups or neighbours’ homes. Inherent in all three scales was the use of both
emotionbased and problem-based coping strategies. In the first instance, sometimes carers
preferred denial, behavioral disengagement, and mental disengagement such as the
imposition of spatial constraints on themselves and the care recipient. In the second instance,
evidence showed that at times, carers had developed effective routines, confronted public
reactions, and formed their own ‘places of safety’ or networks of ‘safe havens’ (Pinfold,
2000) which often revolved around other people’s homes or local day centres.
It was clear from the narratives of the carers, that the independent living model in the home
setting is greatly muddied. The fundamental principles of independent living are control,
choice and self-governance (Morris, 1993); that is, disabled people must have control of their
own lives, and must have choices available that make control and selfgovernance meaningful
(Thomas, 2007). This paper has attempted to unpack this contested terrain: When caregiving
takes place at home, the principles are blurred by three separate and intertwined factors;
firstly, limited (and limiting) support by professionals and gatekeepers to community care;
secondly, disablist assumptions by society and thirdly; the presence of overprotection and
fear on the part of the carer. Each of these simultaneously appear to re-enforce each other,
leading to carers self-regulating their own and their care recipients’ behaviour, thus re-
igniting the care/dependency debate.
In the first case, the service providers’ limited recognition of the care recipient’s ability and
reactionary support generally means the choices of independent living prospects are greatly
minimised; thus re-enforcing a carer’s position in the middle of the contested ‘dependency’
terrain. Only when the disablist assumptions in professionals’ work practices and gatekeepers
to services are challenged, can adults with ID have control over their lives, and barriers be
removed to family members facilitating independence. However, in terms of a person with ID
realising their potential for independent living, it was clear that success depends on more pro-
active community support from social workers, non-profit groups and public services.
Secondly, despite the unique nature of individual caregiving experiences, each carer had to
grapple with a shared mainstream discursive and ideological construction of disability as well
as the material consequences of these discourses in everyday society. This was evidenced in
the looks, impatience, body language and verbal comments experienced in public spaces.
These everyday experiences of intimidation reinforced the notion of carers having to inhabit
‘disabling spatialities’ (Hawkesworth, 2001), meaning that although space has a physical
form, it has an inherently political and strategic quality and temporality constructed out of
specific social relations; in this case, public attitudes about disability and behaviour affecting
carers’ occupation of space.
Thirdly, when professional support and society fail to encourage those with disabilities to live
independently or to participate as facilitated agents in their own lifeworld, the evidence from
the interviews suggests that carers struggle with promoting independence; the reality being
that parents have to deal with issues of being overprotective and confronting various social
assumptions about disability and how best different methods of care are. These psychological
experiences, and material decisions about the care recipients’ social and spatial life were
evident at all three spatial scales; the public sphere, the home, and the in-between hidden
spaces, and thus permeating the care recipient’s ability to achieve control, choice and
selfgovernance. The complexity and close inter-relationship between these three factors
suggest that achieving independence is always blurred. Furthermore, it reveals that the
culturally normative meaning of ‘independence’ which dominates our understanding of the
term – that unless we can do everything for ourselves we cannot take our place in society –
masks a greater complexity of entangled patterns and geographies of dependency. Instead, as
Brisenden (1989) has argued, independence should not be linked to the physical or
intellectual capacity to care for oneself without assistance; independence is created by having
assistance when and how one requires it.
In an effort to reconceptualise independence, the conceptof ‘(inter)dependence’ is perhaps
more suitable, in that it allows for the option of living and taking care of oneself by having
assistance when and how one requires it (Watson, McKie, Hughes, Hopkins, & Gregory,
2004). Furthermore, it acknowledges that everybody has certain dependencies to assist in
living their lives. This concept has emancipatory potential for both carer and cared-for as it
recognises reciprocity and mutuality in the caring relationship.
Moreover, it allows for the notion of emotion work, such as motivation and advocacy, to be
recognised, which is often downplayed in disability writing. There are growing signs of an
acknowledgement within social studies research of this concept of ‘interdependence’,
particularly the work by Fine and Glendinning (2005) and Watson et al. (2004). However,
this concept of interdependence is one that has to take place somewhere. As we saw, the
caring nexus is deeply intertwined with the everyday places of inclusion and exclusion,
including a complex geography of comfort zones, safe places, as well as uncomfortable
places and attitudinal barriers. If the space of interdependence solely remains the intimate
social sphere of the home, it will continue to be difficult for the carer to enhance the mobility
of the person with ID and overcome the self-regulaton of their space. The role that support
services and society play is crucial in this instance; in assisting carers grapple with care and
While this debate informs and adds to the geography of caregiving, the spatial perspectives
which arise from providing care and tackling issues of independence are also important for
understanding the care and dependency themes within disability studies, as such an approach
argues that where this clash plays out matters to both the people involved and the outcome of
This paper builds upon work done by Hall (2005) and Metzel (2005) to illustrate the ways in
which both social and spatial life shape carers’ abilities to provide opportunities for
independent living. In terms of emerging directions in the geographies of disability, Crooks,
Dorn, and Wilton (in press), notes that a small literature in geography is developing that
explores relationships between disabled people and their family caregivers, formal service
providers, and others who contribute to creating their social space. This paper identifies how
geography is central to how these relationships within the caring nexus play out, as well as
understanding how the issues of promoting independence and the risk of overprotection both
shape and are shaped by space. A recognition of the complex interplay of physical behaviour,
impairment, social ‘norms’ and space marks out the possible parameters of ID within
I thank Dr Christine Milligan and the reviewers for their helpful comments and suggestions.
The research was funded by NIRSA and ESRC (PTA-026-27-1455).
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