creating spaces of wellbeing for people with learning disabilities: a commentary

New Zealand Geographer

(2007)

63

, 130–134 10.1111/j.1745-7939.2007.00100.x

© 2007 The AuthorJournal compilation © 2007 The New Zealand Geographical Society Inc. Published by Blackwell Publishers Ltd.

Blackwell Publishing Asia

Comment

Creating spaces of wellbeing

Comment

Creating spaces of wellbeing for people with learning disabilities: A commentary

Edward Hall

Geography, School of Social Sciences, University of Dundee, Dundee, DD1 4HN, UK

People with learning disabilities

1

are on thewrong side of the persistent and worseninginequalities in health in the UK (DisabilityRights Commission 2006). Overall, they havea lower life expectancy, and poorer physicaland mental health, than the general population(Alborz

et al

. 2003). In addition, people withlearning disabilities (PWLD) commonly ex-perience inappropriate and discriminatoryhealthcare provision, through a combinationof intense medicalization and ‘diagnosticovershadowing’ (when clinicians relate most orall health problems to the learning disability);further, low value and expectations are placedon their health by health professionals, carersand often PWLD themselves (Cooper

et al

.2004; NHS Scotland 2004). Policy responses,from easy-read health promotion informationto regular health screening, and training forhealthcare staff, have proven to be inadequate,hampered by institutional discrimination withinthe health and care systems, and by the emphasison individualized consumption-based healthbehaviours that dominates health policy(Nettleton 2006). This commentary will arguethat these health and healthcare inequalitiescan only be effectively tackled by a shift towardscollective notions of ‘wellbeing’ amongst PWLDthat take seriously the social spaces and networkswithin which they live. Importantly, this hasbroader significance: PWLD are undoubtedlyat the ‘sharp end’, but many others on themargins experience health injustice.

Geography’s interest in health has undergonea dramatic transformation over the last decade,broadening out from biomedically informed

studies of the distribution of disease andhealthcare (though these still dominate), toan expanded notion of health as a physical,mental and emotional state of being, embeddedwithin particular places (Kearns 1993; Kearns& Gesler 1998; Gesler & Kearns 2002). Thisreflects broader developments within the socialtheory of health, in particular the emergenceof the ‘new public health’ (Petersen & Lupton1996), and the associated shift in health policyfrom treatment to prevention, focused on thebehaviours of individuals. In short, we see thebenefits and disbenefits of the post-modernizationof health (Nettleton 2006): the recognition ofdifference and identity, and subjectivity andexperience, but at the possible expense ofa shift in explanation and responsibility fromstructures to agency, and from state to individual.In this period, arguably, inequalities in healthhave increased, with those able to respondbenefiting and others left behind, while at thesame time research and policy interest in andconcern for health inequalities has declined.

PWLD have largely not benefited from ahealth policy centred on the individual, withexpectations of particular behaviours, bodyconsciousness, individual responsibility andconsumption. A combination of particularembodiment (many have long-standing geneticand biophysical conditions), lack of symptomawareness, low value placed on health, plus poorliving conditions, dependency, poverty, poordiets and an overall lack of power over theirlives, means that it is very hard, if not impos-sible, for PWLD to achieve ‘health’ in such anenvironment. The spaces of medicalization,

Note about the author: Dr Ed Hall is Lecturer in Human Geography at the University of Dundee, Scotland.

E-mail: [email protected]


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© 2007 The AuthorJournal compilation

© The New Zealand Geographical Society 2007.

dependency and disempowerment in whichthey largely live their lives, are such that ahealth policy based on individual consumptionwill inevitably fail.

The promotion of health (part of the newpublic health) has been at the heart of theindividualization of health. However, successivegovernments in the UK have made a veryselective reading of the theory and practice ofhealth promotion – set out in the OttawaCharter (WHO 1986) – emphasizing individualresponsibility for and control over behavioursand health; in particular diet, exercise, andalcohol and cigarette consumption (Departmentof Health 1999). Arguably, the main thrust ofthe Charter – the empowerment of individualsto shape their health through the creationof supportive ‘socio-ecological’ environments(WHO 1986: 1) – has been purposively side-lined in an individualized health policyenvironment. However, some initiatives thatrecognize and promote the contexts withinwhich people live have emerged, allied tothe UK Government’s place-based policy onsocial exclusion/inclusion. What ‘Healthy Cities’,‘Health Action Zones’ and ‘Healthy LivingCentres’ (Curtis 2004) have in common is anholistic and in some senses collective approachto health, acknowledging and connecting healthto issues of housing, the physical environmentand employment, and involving the participationof people within the community in improvinghealth (Department of Health 2004). To cite oneexample: the Healthy Living Centre in Partick,a deprived area of Glasgow, offers walkinggroups, fitness classes, youth groups and healthyeating advice, in a context where othercommunity-centred activities and groups are held.

2

However, looking more closely at theseinitiatives, which seemingly shift the balance backtowards the collective and the multifacetedenvironments of health, significant weaknessesbecome evident, which arguably further exacer-bate health inequalities for PWLD and others onthe margins.

First

, there remains a restricted conceptual-ization of health as biomedical status, withthe success of the above initiatives tied tomeasurements of mortality and morbidity in aselected range of chronic illness conditions (inparticular, cancers, heart disease, mental healthproblems, diabetes and poor physical health).

Possible health outcomes less easily measured,such as empowerment and individual andcollective wellbeing, are not prioritized. Formany PWLD, whilst improvements in chronicillness may be beyond reach, positive healthgains can be made with an emphasis on sup-port and wellbeing.

Second

, and relatedly, these narrow policytargets for health improvement reflect nationalpriorities of disease reduction and healthcarespending, and broader ideologies of individu-alism, consumption and embodied normality;they do not reflect the often very differenthealth beliefs, understandings and needs ofPWLD. In other words, the policy solutionto reducing heart disease and diabetes –achieving a healthy body through physicalactivity and healthy eating – is beyond thecapabilities and resources of many PWLD.

Third

, these place-based health strategiesare focused on a limited number of areas,usually selected on the basis of significantdeprivation and, as a consequence, many otherpeople and places in need are omitted. PWLD,although mostly poorer than the mainstreampopulation, are not concentrated in any sig-nificant numbers in deprived areas; insteadtheir numbers and social networks stretchacross areas, and so as a group they often missout in a place-based strategy. Further, thesestrategies rely on the active participation ofpeople within the area, indeed for HealthyLiving Centres the application for funding mustbe made by local people (Curtis 2004). Therehas long been a concern that establishedcommunity individuals and organizations, aswell as local agencies and institutions, candominate such initiatives, restricting the parti-cipation and empowerment of the full rangeof the population (Foley & Martin 2000). Inparticular, those already socio-spatially excluded,such as PWLD, find it very hard to be includedin forms of participation determined byexisting power networks, and so the needs ofthe mainstream population, and the solutionsthey demand, dominate locally driven policy.Further, the act of participation itself can havehealth benefits, with those involved furthergaining and those excluded falling furtherbehind (Curtis 2004).

Fourth

, despite the rhetoric of ‘joined up’policy, these initiatives tend to focus on a

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E. Hall



limited range of health outcomes, and shyaway from broader structural processes thathelp to generate poor health, such as housingquality, institutional discrimination and access.For PWLD and others, these issues play acentral role in placing them in positions ofhealth inequality.

Fifth

, most place-based health policies havea limited life-span of around five years, afterwhich funding is shifted elsewhere. Whilst theestablishment of a Healthy Living Centre isoften accompanied by a burst of investmentand activity in a deprived area, for PWLDsuch is the nature of their needs and experiencesacross the lifecourse that short-term projectsare of limited value.

Importantly, this is not to reject place-basedhealth policies outright. The establishment oflocal social networks, the empowerment oflocal people and groups, and the recognitionof broader causal factors of health, are all tobe welcomed. However, as argued above, notonly do such policies commonly fail to live upto these intentions, but also PWLD mostly donot benefit. Most PWLD live in family or carehomes, have no or very limited employment,limited financial and social resources, restrictedsocial networks of other PWLD, supportersand families, experience discrimination in health,social care and everyday life, and have un-healthy bodies. Given this embedded depend-ence, and social and bodily vulnerability, it isperhaps not surprising that place-based healthpolicies, such as those critiqued above, com-monly both miss the particular positions andneeds of PWLD

and

further disadvantage themin relation to others better positioned in thelocal communities being targeted. To trans-form the lives and health fortunes of PWLDrequires a further shift away from the biomed-ical approach that dogs many place-basedinitiatives, and outwards from bounded placesand communities to broader processes andstructures that constrain people (whilst stillcentring action at the local scale). The remainderof this commentary sets out possible ways ofcreating spaces/places that generate health or,perhaps more appropriately, ‘wellbeing’.

Wellbeing better captures what is at stakehere; that is, a state of embodiedness that notonly embraces the WHO’s (1946) much quoteddefinition of health – ‘a state of complete

physical, mental and social wellbeing, and notmerely the absence of disease and infirmity’ –but also extends it to capture how well peopleare placed within supportive and empoweringsocial, economic and political contexts. Impor-tantly for PWLD, the notion of wellbeingallows their commonly ever-present experi-ences of ‘disease and infirmity’ to be incor-porated into their broader lives, and the issueswhich have as much of a say in shaping theirfutures – employment and poverty, housing andcare services, and discrimination and exclusion– placed centre stage. In short, your wellbeingis what you define it to be, which can beextremely empowering. As Kelly

et al.

(1993)suggest, the WHO’s 1946 definition of healthrequires a recognition of difference, identityand contingency; we can use these concepts tothink through how wellbeing for PWLD canbe reimagined.

PWLD (on the whole) live in dependentand controlled circumstances, with restricted(yet strong) social networks and constrainedconnections with mainstream society (withregard to housing, work, leisure and so on)(Hall 2004, 2005). A focus on wellbeing – onthe broader landscape of people’s lives andcontexts – draws the attention away frombiomedical health (and the related individualbehaviours) and towards the structures,policies and actions that shape the lives of PWLD,from the presence of PWLD in everyday spacesto their access to leisure facilities, and fromsupport for empowered decision-making todiscrimination experienced in health andsocial care contexts. However, this is not themoment to begin to list changes to socialpolicy for PWLD – important though these are– but instead to outline more place-centred,empowering, perhaps temporary, initiatives tobuild (admittedly slowly) spaces and experiencesof wellbeing for PWLD.

More than environments,

spaces

of wellbeingsuggests social contexts, networks and resourcesthat allow for, encourage, develop and nurture,at the very least, bodily and mental stabil-ity, and at the very best, happiness and peace(cf. Parr 2006). For PWLD, more precisely,this could mean:

first

, empowerment, through(self)advocacy, to take decisions regardingtheir care, lifestyle behaviours and everydaylife;

second

, being employed, whether paid or


133



unpaid, or employing a carer or assistant, tohave a presence in and make connections withmainstream society (and to challenge under-standings of learning disability);

third

, havinga community presence, from entering main-stream spaces of leisure to participating indominant community groups and activities,and so ‘normalizing’ learning disability withinsociety;

fourth

(self)advocacy to counterindividual experiences of discrimination inhealth and social care, and housing, and sobegin to challenge institutional discrimination;

fifth

, choosing self-exclusion at certain times,in learning disability specific housing, employ-ment and social activities, to provide respitefrom discriminatory society and gain supportwithin a differently imagined ‘normal’ environ-ment (Hall 2004);

sixth

, strengthening identityand social networks, and more simply enjoy-ment and laughter, through collective activitiessuch as walking groups, drama, music, art, film-making, and so on (cf. Parr 2006). Importantly,the discriminatory places and often constrainedspaces within which many PWLD live – andfrom which current policies set out to freethem – can be reshaped, rethought and reownedby PWLD. For example, a care home, com-monly tied to notions of dependency andexclusion, can become a space of support,inclusion and wellbeing through effective advo-cacy by the residents (Hall 2005). Crucially, thestimulus for and the shaping of the above initi-atives is coming from the gradual empower-ment of many PWLD, nurtured and developedby the tight networks of friends, families,supporters and advocates, and organizations(such as ‘Enable’ in Scotland), within whichPWLD live their lives (Goodley 2000).

PWLD can take an active role, with supportand advocacy, in reshaping the spaces withinwhich they live, to generate environments,experiences and bodies of wellbeing. Theseare not only therapeutic landscapes (Gesler1992) for the recovery from illness and infirmity(important though these are), but also land-scapes of support and care, and action andresistance. As stressed at the beginning of thiscommentary, the positions and experiencesof PWLD are arguably a distillation of allof our health injustices. Indeed, much of theargument above could be applied to any socialgroup that has been disenfranchised by dom-

inant individualized, consumption-led healthpolicy. Seizing back the agenda and focusingon social structures and places, wellbeing andempowerment, rather than individual beha-viours and biomedical bodies, is a task for all;health geographers must play a role in realiz-ing these ambitions.

Acknowledgements

Many thanks to Robin Kearns, Damian Collinsand Janine Wiles for organizing the conferenceand this collection. Many people with learningdisabilities and their supporters I have spokento have heavily informed this commentary;there are too many to name individually, butparticular thanks to Lena Gillies at Enable andmembers of the PWLD-run ACE (AdvisoryCommittee of Enable) groups in Scotland.

Endnotes

1 Better known internationally as ‘people withintellectual disability’; ‘learning disability’ remainsthe lay and policy term used in the UK (see Hall2004). The term incorporates a spectrum of im

-

pairments, from mild (e.g. dyslexia) to thesignificant (e.g. Down’s syndrome). I use it hereto refer in particular to those with moderate-to-significant disability.

2 See: www.theannexehlc.org

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