The entangled geographies of social exclusion/inclusion for people with learning disabilities
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Transcript of The entangled geographies of social exclusion/inclusion for people with learning disabilities
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Health & Place 11 (2005) 107–115
www.elsevier.com/locate/healthplace
The entangled geographies of social exclusion/inclusionfor people with learning disabilities
Edward Hall�
School of Social Sciences, Media and Communication, Queen Margaret University College, Clerwood Terrace, Edinburgh EH12 8TS, UK
Abstract
People with learning disabilities (PWLD) are one of the most marginalised groups in Western society. Social policies
attempting to redress this situation focus on their ‘reinclusion’ into mainstream socio-spaces through engagement in
‘normal’ activities, primarily paid employment and independent living. Drawing on group interviews in Scotland, the
paper develops a nuanced account of the lives of PWLD, exploring their experiences of exclusion and seeming
‘inclusion’, and also the alternative spaces and networks of inclusion developed by many PWLD. The paper argues that
the situations and experiences of exclusion/inclusion are complex and ‘entangled’, shaped by the socio-spatial contexts
within which PWLD live. The paper ‘reimagines’ social inclusion as a transformation of mainstream social spaces to
incorporate PWLD, achieved through self-advocacy.
r 2004 Elsevier Ltd. All rights reserved.
Keywords: Learning disability; Social exclusion; Social inclusion; Self-advocacy
Introduction
People with learning disabilities (PWLD) are one of
the most marginalised groups in Western society,
experiencing severe personal, social and institutional
abjection and discrimination.1 This is manifest in low
levels of employment, restricted choices in housing, poor
educational opportunities, a lack of control over
decisions that affect their lives, and everyday experiences
of intimidation in public spaces (Foundation for People
e front matter r 2004 Elsevier Ltd. All rights reserve
althplace.2004.10.007
1 317 3601; fax: +44 131 317 3604
ess: [email protected] (E. Hall).
sability’ is the term used in UK social policy
ealth and care services and in popular discourse
those with mental impairment and, as such, is
he author acknowledges the usage of ‘learning
ning difficulty’ and ‘intellectual disability’ in
d spatial contexts (and as the term used in this
pers) (Hall and Kearns, 2001).
with Learning Disabilities, 2001). Their marginalisation
occurs in the context of the twin social policies of the
deinstitutionalisation of people with learning disabilities
and the ‘social inclusion’ of excluded groups within
‘normal’ spaces and activities.
Prior to the shift into ‘community care’ many PWLD
were housed in long-stay hospitals or asylums located
physically and socially on the margins (Radford and
Tipper, 1988). Metzel (1998) has shown how, as the
asylums closed and PWLD moved into nearby commu-
nities (where the majority of PWLD have always lived),
the experience of separation and isolation continued, a
situation termed the ‘asylum without walls’ (Dear and
Wolch, 1987, p. 6). As Laws and Radford (1998) note,
while the objective circumstances of many PWLD have
improved as a result of deinstitutionalisation—living
within mainstream communities and often being em-
ployed—subjectively it has been less good, as they have
encountered discrimination and abjection. The ‘‘ulti-
mate other’’ of mental difference (Parr and Butler, 1999,
d.
ARTICLE IN PRESSE. Hall / Health & Place 11 (2005) 107–115108
p. 14) that lay behind the building of the asylums
continues, albeit in a subtler form, in the policy of
community care and ‘social inclusion’.
‘Social inclusion’ is the unifying principle of UK
social policy, reformulating poverty and marginalisation
as exclusion from majority social activities and spaces,
and constructing inclusion as a process of incorporation
into these activities and spaces (Madanipour et al, 1998;
Byrne, 1999). For PWLD, social inclusion is framed in
the ‘Same as You?’ review of care and services in
Scotland (Scottish Executive, 2000) and the similar
‘Valuing People’ document in England and Wales
(Department of Health, 2001). The reports assert that
PWLD should be afforded ‘‘the same opportunities as
others to get a job, develop as individuals, spend time
with their family and friends, enjoy life and get the extra
help they need to do this’’ (Scottish Executive, 2000,
p. iv), guided by the ‘‘four key principles of rights,
independence, choice and control’’ (Department of
Health, 2001, p. 3).2 In practice, inclusion within and
exclusion outwith mainstream society are more narrowly
conceived, namely as employment and independent
living (Barnes, 1999; Christie and Mensah-Corker,
1999). Sibley (1998, p. 119) criticises the ‘singular
concern’ with economic (non)engagement as the marker
for inclusion/exclusion, arguing that it masks a far
greater complexity of inclusionary and exclusionary
situations and experiences. Drawing on Sharp et al’s
(2001) disruption of the domination/resistance dichot-
omy in power relations, the paper suggests that far from
being absolute positions, social inclusion and exclusion
are fragmentary and relational, ‘entangled’ within each
other in particular ways and in particular contexts. So,
while getting a paid job is a key criterion of ‘social
inclusion’ for PWLD, the experience of work can be
extremely variable—for some a positive inclusionary
experience, for many a difficult exclusionary combina-
tion of low-waged and low-skilled employment (Baron
et al, 1998). Conversely, many PWLD who do not want
to or cannot be employed are often involved in non-paid
social or cultural ‘work’ (Levitas, 1996), in separate
socio-spaces and networks, providing an alternative
context of ‘inclusion’, yet also ‘excluding’ them from
majority society (Colley and Hodkinson, 2001). What
emerges is a contested concept: the social policy of
exclusion/inclusion that is premised on PWLD achieving
particular social roles and the situations and feelings
of exclusion/inclusion that many PWLD experience
(cf. Parr et al, 2002). This paper attempts what Sibley
(1998, p. 119) calls a ‘nuanced’ account, that incorpo-
rates these policy, individual, material and conceptual
entanglements of inclusion/exclusion, by studying the
2Social inclusion is arguably a continuation of the long-
standing social policy agenda of the ‘normalisation’ of PWLD
(Nirje, 1969) into ‘socially valued roles’ (Wolfensberger, 1983).
‘fine print’ of the everyday lives of PWLD in a range of
socio-spatial contexts (Laws and Radford, 1998).
The research, on which the paper draws, involved
group interviews with 21 PWLD plus their supporters in
five locations in Scotland—Thurso, Perth, Helensburgh,
Glasgow and Annan—in late 2002 and early 2003
(see also Hall 2004). Group interviews, providing
support and giving confidence, and held in locations
familiar to the participants, were used to build up
‘narratives’ of people’s lives of work, home, care and
social life (Booth and Booth, 1996; Coles, 2001) and
their experiences of exclusion and inclusion, in specific
socio-spatial contexts. The narrative approach is re-
flected in the ‘conversational’ format of the interview
extracts.
The paper is in three main sections: firstly, the
‘entangled’ exclusionary and inclusionary experiences
of PWLD in mainstream social spaces in Scotland are
briefly documented; secondly, the paper describes the
spaces of refuge and collectivity being built by many
PWLD to provide alternative forms of inclusion and
raise awareness; and thirdly, the paper ‘reimagines’
social inclusion as a transformation of mainstream
social spaces to incorporate PWLD.
Experiences of social exclusion and inclusion
Documenting the everyday experiences of PWLD in
mainstream society reveals a complex geography of
exclusion and inclusion, from avoidance, verbal taunts
and physical abuse through to indifference, acceptance
and incorporation, in different social spaces (Sibley,
1995). For many PWLD, this means marginalisation
into ‘small action spaces’ on the ‘outer fringes of the
daily round’ (Laws and Radford, 1998, pp. 99–100),
while for some, spaces of acceptance are found. The
examples discussed below begin to illustrate the en-
tanglements of exclusion and inclusion in particular
social spaces.
‘They stare at you and all that kind of stuff’: everyday
geographies of exclusion/inclusion
In one location—Helensburgh, a seaside town west of
Glasgow—the geography of exclusion and inclusion in
the (quasi)public spaces of cafes and pubs is clear for the
PWLD interviewed, with some places known to be sites
of intimidation and rejection from both customers and
staff, and others understood as ‘welcoming’.3
Ed: When you go the pub or a cafe do people
sometimes say things to you or look at you?
Gordon: Sometimes.
3All names have been changed.
ARTICLE IN PRESS
4Enable’ is the main learning disability charity in Scotland.
E. Hall / Health & Place 11 (2005) 107–115 109
Beth [supporter]: Are people rude to you Leanne?
Leanne: Mmm.
Gordon: If you walk into White’s Cafe you’re
welcomed with open arms.
Leanne: Yeah, that’s right.
Kay [supporter]: How about the Pear Tree or
O’Neills, would you expect to be made to feel
welcome or unwelcome?
Irene: Be unwelcome.
Ed: What do people say or do to make you feel
unwelcome?
Irene: They stare at you and all that kind of stuff.
Gordon: I find that more in pubs than cafes y
Sometimes, I do get a feeling of like feeling
unwelcome.
The looks, body language and verbal comments
experienced in some of these spaces are intimidating
and hurtful for many PWLD, and combine to give a
strong sense of exclusion or being ‘unwelcome’. Their
mental ‘map’ of exclusionary and inclusionary spaces,
demonstrated above, guides them to a limited number of
places in the centre of the town—such as White’s Cafe
and a church tearoom—where they are confident of
being treated well. Further, in close social networks such
as the group above, ‘word gets round’ amongst PWLD
of the places within the relatively small town of
Helensburgh to avoid and those to visit.
In another location—Perth, a market town in east
Scotland—the rather more public space of the street
becomes a site of an exclusionary experience for one
PWLD, an event recounted by the group. A friend of the
participants was attacked by some young people whilst
walking between her day centre and care home:
Mandy [supporter]: What about that story about
something that happened to Geraldine, that wasn’t
very nice?
Janine: Yes, the schoolboys hitting stones to her, as
she came over from the centre as she was going home.
Winifred: Aye, you told me about that.
Mandy: Is she okay now?
Janine: Yes, she’s fine. The boys hitting her with
stones, the lady looking after her went to sort it out.
The boy from the house y so they reported it. Just
came and hit her with stones.
y
Jane: Oh, what a shame! What a shame.
Physical abuse is perhaps the ultimate form of
othering and exclusion, and experiencing it in a
community space where the individual lives marks out
very clearly the exclusionary sense of being ‘out of place’
(Mencap, 1999). Talking about the incident stirs up
feelings of fear, sympathy and anger amongst the group,
seemingly confirms the exclusionary and intimidatory
nature of certain public spaces, and asserts the value
of the ‘intimate social and spatial worlds’ (Parr, 2000,
p. 226) developed amongst PWLD and their supporters
in Perth and elsewhere to avoid such confrontations.
For example, most of the group now travel between
their homes and other activities by private car, taxi or
minibus, avoiding public transport and the street. For
them, a sense of safety and a type of ‘inclusion’ can be
achieved by self-exclusion from the spaces and activities
of the majority.
‘It happens in every workplace doesn’t it?’: experiences of
‘inclusion’
The policy of social inclusion for PWLD assumes
(and it is a significant assumption) that once PWLD are
‘normalised’ into the social roles of worker, house
buyer/renter and consumer, they will experience less
discrimination and be incorporated into other main-
stream social spaces and activities (Scottish Executive,
2000). However, for some of those interviewed, being
employed and/or living in private rented housing can be
a continuation of feelings and experiences of social
exclusion, as discriminatory attitudes and processes
structure these supposedly inclusive spaces. For exam-
ple, Gordon has worked part-time in a supermarket,
filling shelves in Helensburgh for 12 years, working
1 day a week. His limited work role is compounded
by hostile attitudes and behaviour:
Ed: What are the other people like that you work
with?
Gordon: They’re fine. There was a bit of a time,
well it happens in every work place doesn’t it,
when there was just, and that’s why I’m involved in
the thing that me and Kay [supporter] are involved
in, with the [‘Enable’]4 anti-bullying campaign.
It’s not just schools you get it in, it’s workplaces
as well.
Ed: This has happened where you work?
Gordon: Oh, yeah, but I don’t take it lying down.
Ed: What would people do?
Gordon: They would just say all sorts of, they would
just use all sorts of tones, well, put it this way, a
couple of months ago, I went to the management
because it was just getting ridiculous Ed, it just
wouldn’t stop.
Ed: What were they doing?
Gordon: Well, they just kept on antagonising and
taunting me all the time.
Irene: People calling you names you mean Gordon?
Gordon: Yeah. People call you names. It’s unaccep-
table Irene. y So, what I did was I just went up to
the manager’s office and said, ‘Look, I’ve had
ARTICLE IN PRESSE. Hall / Health & Place 11 (2005) 107–115110
enough’, I said, ‘I want this to stop’, and immediately
it was done.
y
Ed: And did they say anything anymore?
Gordon: No, they didn’t say anything, but I knew
what they were thinking, I could tell in their faces.
Within this supposed space of ‘inclusion’, a series of
exclusionary practices and experiences are in play—
verbal and non-verbal intimidation from fellow employ-
ees and the management’s treatment in terms of job role,
hours and (lack of) career development. Although
Gordon says he will continue to work in the super-
market—it is near to his home and the hours fit in with
his other activities—he has to do so in the knowledge
that he is seen as ‘out of place’ by others. Social
inclusion policy’s narrow focus on employment per se
makes such exclusionary experiences—workplace dis-
crimination (Guardian, 2003), low pay (Reid and Bray,
1998) and social isolation (Pearson et al, 2002)—
inevitable. For example, Gordon does not have estab-
lished social contacts with his fellow employees;
his friendships are almost exclusively within PWLD
networks.
The other key marker of social inclusion policy for
PWLD is the move from supported accommodation in
the community to living independently in rented or
owner-occupied housing. Of the 21 people interviewed,
five lived independently; the remainder lived with
family or in supported accommodation. Significantly,
these five all accessed their housing through PWLD
networks of family or friends; securing inclusion in the
exclusionary property marketplace necessitates using
alternative inclusionary networks. For some inter-
viewed, usually the more able—for example, Gordon
has a flat in the centre of Helensburgh—living indepen-
dently has been a positive experience. For others, living
on their own has been a difficult and exclusionary
experience. Here, Anne, a supporter, recounts the story
of one PWLD in Glasgow, who was unable to attend the
group interview:
Brian lives on his own, and has lived on his own for
quite a long time, he was in a supported living place
[before]. He’s now in his own flat, but he has said he
doesn’t know if he prefers it or not. He had his own
room in the supported living place, but now he says
it’s really difficult for him to be on his own, he has 24
hour care, he goes to day-care so he’s not with the
carers all the time, but he has said that now he is with
carers all the time, he feels rude saying he wants to be
on his own. When he was in the supported place he
could go to his room and it was okay, now it’s one-
to-one, they’re there all the time. y That’s some-
thing that people would think is the ideal, to be on
your own, but Brian’s not sure.
For Brian, independent living—in a rented flat
provided by a housing association for disabled people
in a housing estate in outer Glasgow—is a complex
experience. Having secured a flat of his own he now feels
more dependent on support staff, who are continuously
present. When living in supported accommodation he
had the support of staff and other PWLD. The
supposedly inclusionary space of independent living
can produce exclusionary experiences for some, parti-
cularly the less able and in particular support contexts,
as PWLD are removed from supportive (and inclusive)
environments and are isolated (French, 1993; Oldman,
2003). Gordon’s and Brian’s cases show how, although
within a space of apparent inclusion, different combina-
tions of housing availability, support, and location—
Gordon lives in the middle of a relatively small
mainstream community, while Brian is in a group of
houses for disabled people within a larger urban
community—can produce highly variable individual
experiences.
Spaces and networks of refuge and collectivity
Many people with learning disabilities are in a
‘double-bind’ of marginalisation, experiencing exclusion
from and abjection and discrimination within the very
social spaces that are the key markers of social inclusion
policy. This section explores some of the ways in which
PWLD are responding to these experiences, from
forming spaces of ‘safety’ and inclusion, to asserting
themselves in exclusionary situations, and acting collec-
tively. Importantly, such strategies presently fall short of
challenging the underlying reasons for and processes of
the social exclusion of PWLD.
Refuge and safety
Milligan (1999) and Pinfold (2000) argue that in the
process of deinstitutionalisation the notion and physical
space of ‘refuge’ was lost, a place of bounded safety
from the rolling turmoil of a discriminatory and often
confusing world for many PWLD. The closure of long-
stay hospitals and asylums, while overwhelmingly
positive, has failed to replace the ‘community’ of the
institution with adequate spaces of care and rehabilita-
tion within an often hostile mainstream society (Gleeson
and Kearns, 2001). Many PWLD, with their families
and carers, have instead formed their own ‘places of
safety’ or networks of ‘safe havens’ (Pinfold, 2000). A
key space is the care home, increasingly sought by those
PWLD (and their families) who are not able to live
independently in their own homes or with their families,
despite being ‘out of fashion’ in policy terms (Scottish
Executive, 2000). Lisa lives in a care home in Perth—she
is dependent on support to live her life, with staff
ARTICLE IN PRESSE. Hall / Health & Place 11 (2005) 107–115 111
helping her to organise her time, money and everyday
living, and even providing some of her social
‘friendships’:
Ed: How many people live there with you?
Lisa: Four.
Ed: What’s that like? You have your own room and
then share other things, is that how it works?
Lisa: Yes.
y
Ed: Are there staff there?
Lisa: Yeah.
Ed: Are they there all the time?
Lisa: Yes.
Ed: What do they staff do for you, how do they help
you?
Lisa: Sort my money out, do my diary.
Ed: Help you to organise things?
Lisa: Yes.
y
Ed: So, you share with other people. Do you do other
things with them?
Lisa: No. I’m doing something else with the staff just
now, go to the gym.
Even though it is seen as a ‘poor relation’ of
independence, living with others provides a ‘nurturing
community’ for Lisa (Gleeson and Kearns, 2001, p. 62)
and arguably affords her more independence, as she is
able, with organisational support, to spend significant
timeout with the care home (Oldman, 2003). Such spaces
of inclusion are not unproblematic, however. Lisa’s
situation, for instance, could be read as one of
dependence, control and continued exclusion from
mainstream society. Further, such exclusionary spaces
and networks, while providing opportunities for build-
ing a supportive, inclusive and empowering ‘stretched
community’ (Valentine, 2001) of PWLD and their
supporters, necessarily accept and reproduce the broad-
er social exclusion of PWLD.
Lisa’s position could also be read as one of privilege,
as the opportunity and ability to access such spaces of
inclusion is dependent on the agency, support and
financial resources of the PWLD (and their family).
Further, some places, such as Perth, have well-developed
networks of safe spaces and support for PWLD, while in
others, such as Thurso—a remote small town in north-
ern Scotland—there are limited spaces in care homes
(most of those interviewed lived with their families) and
a thinly spread PWLD social network.
Self-identity and taking control
In some instances, PWLD use the opportunities
afforded by these safe spaces and networks to move
from coping with everyday exclusionary experiences to
asserting their own needs and identities. Philip has lived
with his mother in a flat in a large estate in east Glasgow
all his life (40 years); when she was recently admitted to
hospital, his non-PWLD siblings came to live in the flat
to look after him. This experience provoked feelings of
wanting to live ‘independently’:
My family was taking over y they more or less took
over the house. I said ‘you’ll no dictate to me what
I’m doing’. We had some rows and all that, and
eventually I said to my mother ‘I’m getting a house of
my own’y I said to my sister, ‘I’ve got to have a life
of myself’. [My family] didn’t think I could do it. y
Some families are over-protective. I made it plain to
my own family, I’ll make my own rules.
Through a family crisis and the ensuing conflict,
Philip made a claim for a change in his circumstances
and, further, asserted his ability to have control over this
change. In doing so, he was contesting the dominant
construction of PWLD identity as without agency and
competence. There is an important caveat, however:
Philip’s part-time job in a campaigning organisation and
voluntary work for Enable have provided him with the
confidence and skills both to know about independent
living and to assert himself to achieve it. This confidence
also encourages him to react forcefully to abuse he
receives from a neighbour in his community:
Philip: I’ve got one neighbour, and every time I pass
she shouts at me. One day I passed and I put the ‘V
sign’ up.
Ed: Why does she shout at you?
Philip: Because of my disability. If she’s got a
problem, I said this to [another] neighbour and she
said she’s got an attitude problem, she’s a bit dotty
in her old age. I’ll put you back in your place. As far
as I’m concerned she can put her nose in the air, for
all I care, but at the end of the day I’m 20 times taller
than her.
Philip’s defiance again challenges the dominant
understanding of PWLD as passive. Further, by placing
the responsibility for the abuse onto his neighbour—
‘she’s got an attitude problem’—and by claiming her
mental incompetence—‘she’s a bit dotty in her old
age’—Philip suggests that learning disability is a social
construction, and disrupts the connection between
competence and learning disability, if only temporarily.
Problematically, in this entanglement of inclusion and
exclusion, Philip only achieves a sense of empowerment
through the discrimination, labelling and exclusion of
his neighbour; shifting the source of exclusionary actions
between different marginalised social groups arguably
deflects attention from the deeper causes of margin-
alisation.
ARTICLE IN PRESSE. Hall / Health & Place 11 (2005) 107–115112
Contesting dominant understandings of learning
disability remains relatively unusual amongst PWLD.
It is perhaps easier for some, such as Philip in a larger,
more anonymous, community, to assert themselves
vocally and demand alternative living arrangements,
with the support of local organisations. For others, such
as Richard in Thurso, living in an isolated rural
community outside the town where residents know each
other well and there are few support organisations, there
are fewer opportunities to act in this way.
Collective action and awareness
For some PWLD, individual assertions of needs and
claims to identity are developing into collective actions.
This is primarily in the form of (self)advocacy, the
representation of PWLD by themselves or fellow
PWLD. This is a significant moment, as PWLD have
for long been (mis)represented by others—mainly family
and carers—based on the assumption that they lack
the competence to make decisions for themselves (Laws
and Radford, 1998). For example, in Helensburgh,
Gordon and Peter, both more able, are involved in
advocacy work:
Kay [supporter]: Gordon and Peter advocate for
other people, they find it easier maybe to speak up for
what the other person needs than for themselves.
Ed: So you do advocacy. Do a lot of people need
help?
Gordon: Yes. It’s support. You’re taking the side of
the one that needs it.
Ed: Do you think life can be a bit of a battle?
Gordon: Absolutely, yes.
Peter: Yes.
Ed: What are the things you really have to battle for?
Peter: Years ago, getting what you wanted. y But
having said that I think we’re getting some success in
that.
Kay: But your battle is still about trying to help other
people to get where you are?
Peter: Yes.
Kay: ‘Cos you’ve been there?
Peter: Help them to get the best for themselves.
This mutual support by PWLD and supporters to
access services and to cope with the ‘battles’ of everyday
life asserts a self-constructed identity of learning
disability, as PWLD speak for themselves (Bersani,
1998; Guardian, 2001) and ‘‘embrace positive self-
perceptions’’ (Goodley, 2000, p. xii; Simons, 1992).
In Glasgow, some of the participants are involved in
the ‘Voice’ advocacy group, a forum for PWLD to
discuss services, care and everyday experiences; the
group is also involved in the selection of staff for care
and support agencies. However, while advocacy can
empower some PWLD and give them some control over
their lives, these can be temporary and isolated
achievements, as not all PWLD are represented and
the terms defining their exclusion and inclusion
remained unchallenged.
Another form of collective action is awareness raising
amongst the mainstream communities within which
most PWLD live yet from which they commonly still
feel separate (Laws and Radford, 1998). In Helens-
burgh, members of the ‘Advisory Committee of Enable’
(ACE), a group of PWLD who ‘shadow’ the manage-
ment of the charity (Enable, 2003), participated in a
town celebration:
Kay [supporter]: ACE’s float was based on playing
cards, wasn’t it? On the ‘ace’ theme.
Gordon: That’s right.
Ed: Were the other floats on all sorts of things?
Kay: It was intended to be, and I think it worked out
quite well, as a way of involving ACE and people
with learning disabilities as part of the community, to
celebrate the town’s 200th birthday, no matter what
part of the community you came from. So, there was
a whole mixture, wasn’t there?
Peter: Aye.
Gordon: That’s right.
y
Ed: Was that unusual?
Gordon: It was, it’s almost as if the town is finally
beginning to wake up.
Such a public presence of PWLD can be read as an
assertion of a positive identity and a claim to inclusion
within the community that is beginning to ‘wake up’ to
its diversity. It can also be read, though, as a temporary
moment of inclusion in a broader context of the
separateness of PWLD within the community in
Helensburgh. Raising awareness of PWLD through
such a public presence—a learning disability ‘themed’
float—can re-emphasise rather than undermine the
separateness of PWLD in this community.
The self-advocacy organisation, ‘People First’,
run by PWLD and supporters, has begun to widen
its interests to issues of discrimination, but is limited
in size, organisation and presence (Guardian, 2001).
Of the five areas, only Thurso has a People First
group and of those interviewed, one individual had
had some rather tentative contacts with the group,
through her involvement with the more ‘legitimate’
Enable ACE group. Collective action amongst PWLD is
largely limited to advocacy for improved care and
services and awareness raising, undoubtedly significant
for a group so under-represented, but limited in its
possibilities for a necessary ‘reimagining’ of social
inclusion.
ARTICLE IN PRESSE. Hall / Health & Place 11 (2005) 107–115 113
Reimagining social inclusion
The narrow policy discourse of ‘social inclusion’
masks a greater complexity of entangled patterns and
geographies of exclusionary and inclusionary situations
and experiences for PWLD. Within places of seeming
exclusion—care homes and non-paid work—can be
found spaces of inclusion, and within apparent contexts
of inclusion—independent living and paid employ-
ment—exclusion is commonly experienced. From the
‘nuanced’ account set out above emerges an approach to
social inclusion that concentrates on the complex
subjective experiences of PWLD, rather than their
objective excluded/included positions (Laws and
Radford, 1998).
Further, the account shows the importance of socio-
spatial context in shaping the exclusionary and inclu-
sionary experiences of PWLD, and begins to identify the
broader uneven and unequal processes and structures
that produce exclusion and inclusion. In short, for the
PWLD interviewed, it matters for their situation and
experiences whether they live in poorer or wealthier
circumstances in Thurso, Glasgow or Perth. From
the geographies of discrimination and acceptance, to
the experience of work and independent living, and to
the ability to assert themselves individually and collec-
tively, for some PWLD exclusionary experiences can be
countered by inclusionary networks of support and care,
while for others there is social isolation and a limited
number of opportunities. Some individual PWLD and
some places are seemingly ‘rich’ in financial and social
resources and others are less so; and this makes a
significant difference to the subjective experience of
PWLD, whatever their objective position. For example,
the availability of care home places, private transport
and a network of support for the PWLD interviewed in
Perth creates a safe and enabling space of ‘inclusion’; in
Thurso, by comparison, spatial isolation and a lack of
adequate support and facilities, produces experiences of
exclusion, even for those ‘included’ in independent
accommodation.
Whether ‘social inclusion’ is imagined as paid employ-
ment and independent living or as safe spaces of
refuge and social networks, it is presently dependent
on the reproduction of exclusion. That is, social
inclusion policy and alternative networks of inclusion
both perpetuate exclusion, as the discriminatory con-
texts are left unchanged and inclusion within PWLD
networks ignores broader exclusionary processes. A
reimagining of social inclusion would critique the
dominant meaning of the concept, shifting the focus
from economic engagement to a broader notion of social
inequality and justice. For example, while there is long-
standing evidence that paid employment and indepen-
dent living are goals for most PWLD (Oldman, 2003), it
can perhaps be argued that it is not employment per se
that people demand, but access to the resources of
the majority and a position of respect in society.
Similarly, the desire for independent living of many
PWLD can be seen as a demand for something rather
broader, a degree of control over their lives. While social
inclusion policy is concerned with providing access to
the (economic) spaces of the majority, it pays little
attention to the structures and attitudes that dominate in
such spaces, the transformation of which PWLD
arguably desire.
Whilst there is a growing recognition of the limita-
tions of social inclusion policy within government
(Social Exclusion Unit, 2004), for the concept of social
inclusion to be reimagined a challenge will have to come
from PWLD (and other marginalised groups) them-
selves. The growth of self-advocacy is the beginning of
collective awareness and critique amongst PWLD, yet
they remain marginalised within the broader disability
political movement. This is partly due to the continuing
control of learning disability charities and informal
networks by non-PWLD families and carers who more
or less consciously perpetuate the concept of ‘normal-
isation’ into mainstream social roles (Walmsley, 1997).
More crucially, the mainstream disability political
movement has not fully recognised the concerns, issues
and identities of PWLD. The social model of disability,
which revolutionised disability theory and provided a
philosophical core for the emerging disability political
movement (Campbell and Oliver, 1996), does not readily
imagine learning disability as a social construction,
as it does other disabilities, largely content for it to be
seen as an organic state (Chappell, 1998). Self-advocacy
and the beginnings of a political activity amongst
PWLD must be nurtured by the broader disability
movement (Guardian, 2001), and learning disability
reconceptualised as a social construction—as a position
of oppression in a society organised socially and
spatially for the able-bodied and minded (Oliver,
1990). More specifically, the focus of social inclusion
must be switched from access to employment and
independent accommodation, to a broader restructuring
of how work and housing are socially and spatially
organised, and, more widely still, to institutional reform
and equality law, underpinned by the notion of social
justice, and driven by PWLD, their networks and the
wider disability movement.
Acknowledgements
Thanks to all those who took part in the interviews,
and to Lena Gillies at Enable. The referee’s comments
were thorough and constructive. Chris Philo and Deb
Metzel provided support and encouragement. The
research, on which this paper draws, was funded by an
RGS-IBG Small Research Grant 2002.
ARTICLE IN PRESSE. Hall / Health & Place 11 (2005) 107–115114
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