Spaces of social inclusion and belonging for people with intellectual disabilities
Dr Edward Hall, Geography, School of Social and Environmental Sciences, University of Dundee, Dundee DD2 4HN, UK (e-mail: firstname.lastname@example.org).
People with intellectual disabilities (IDs) have been defined as ‘socially excluded’ and policies of ‘social inclusion’ invoked to counter this through a focus on paid work and independent living. For many people with IDs this is either not desired or not possible, and as a result many have sought out alternative spaces and activities of inclusion. The paper provides a critique of social exclusion and inclusion, and then goes onto examine (using two case studies) the ways in which people with IDs develop feelings of attachment and belonging within artistic spaces. The paper concludes that not only do these spaces provide mostly positive outcomes for individual people, but also have a potential role in ‘reinscribing’ the social and cultural understanding of people with IDs.
The marginal position of people with intellectual disabilities (IDs) in UK society is well documented: long-standing social, cultural and personal abjection and discrimination has produced a situation where people with IDs are more likely to be deprived, to not be in employment, to be in poor health, to be absent from mainstream social spaces, to experience abuse and neglect, and to sense a low valuing of their lives (Foundation for People with Learning Disabilities 2001; Hall 2005). This marginalisation has been manifest in the historical distancing of people with IDs from majority society, in spatially separated institutions and, later, while living in mainstream communities, provided with adequate services but excluded from wider social opportunities (in what have been termed ‘asylums without walls’; Dear & Wolch 1987, p. 6).
The rediagnosis of poverty and discrimination as ‘social exclusion’, in the first year of the UK's New Labour Government in 1997, was a significant moment for welfare policy in general and for people with IDs in particular (Amin et al. 2002). It placed people with IDs under the same conceptual heading as the long-term unemployed, lone parents, physically disabled people and people with mental-ill health, as those elements of the population who were ‘socially excluded’ and as such in need of the receipt of policy to enable their ‘social inclusion’ (Cameron 2006). This can be viewed as a very positive development: while poverty focused on individuals and was viewed as a fixed state, social exclusion shifted the focus to social structures and was understood as inherently dynamic (Byrne 2005). For the first time, the experiences and situations of people with IDs were being examined and identified alongside those of other groups, with the assumption that their experiences were not only serious and unacceptable, but also were mostly the product of social processes beyond their control. And, further, their social inclusion was being taken seriously, and a set of proposals and actions put in place to address this.
As we approach the tenth anniversaries of ‘Valuing People’ (Department of Health 2001) and ‘The Same as You?’ (Scottish Executive 2000), the documents that identified the social excluded positions of people with IDs and set out routes to social inclusion (in England and Scotland, respectively), it is important to reflect on the central concepts of ‘social exclusion’ and ‘social inclusion’ used in the documents. And, further, to think beyond social inclusion to other ways of conceptualising paths to improved lives and acceptance for people with IDs, emphasising spaces and relations of ‘belonging’ and well-being.
Critiquing social exclusion and inclusion
‘Social exclusion’ was the big social policy idea of the New Labour Government that came into power in the UK in May 1997. While the origins of the term are in mainland Europe in the 1970s, concerned with the fracturing of national ‘social cohesion’ (Room 1995), social exclusion was adopted in the UK as a new way of understanding those people and places in poverty and more generally in marginalised positions in society (Social Exclusion Unit 1997). Much of the early work on social exclusion very usefully characterised the multifaceted nature of the problem, extending beyond straightforward material poverty to a range of social, cultural, economic and political contexts to which people were not gaining access. For people with IDs, this description of social exclusion was set out in the reports ‘Valuing People: a new strategy for learning disability in the 21st century’ (Department of Health 2001) and ‘The Same as You? A review of services for people with learning disabilities’ (Scottish Executive 2000).
The documents characterised people with IDs as marginalised, poor and, in many cases, dependent: ‘[people with intellectual disabilities] are amongst the most socially excluded and vulnerable people in Britain today. Very few have jobs, live in their own homes or have real choice over who cares for them. Many have few friends outside their families and those paid to care for them. Their voices are rarely heard in public. This needs to change’ (Department of Health 2001, p. 14). Further, the causes of social exclusion were identified in the reports as discrimination and prejudice, lack of education and employment opportunities, and systems and structures (within, e.g. housing and healthcare services) that permitted the marginalisation of the needs and interests of people with IDs. In addition, the separated care and accommodation circumstances of people with IDs – in particular, shared homes and day care – and the absence of personal choice over these, were identified as both a result and a cause of exclusion (Department of Health 2001).
The initial broad enthusiasm for the reimagining of poverty as social exclusion slowly began to evaporate as the identified cause became clearer and policies to address the problem were put into place. Sibley (1998, p. 119) noted that social exclusion is a ‘problematic concept’ that draws a clear line between those who are within (included) and those who are outside (excluded) ‘normal’ society, crucially without there being an examination of the principles and criteria for being excluded from or included within that society. Further, the initially identified multifaceted nature of the social exclusion problem was rapidly replaced with a ‘singular concern’ with economic (in)activity (Sibley 1998). Levitas (1998) characterised the discourse of social exclusion in the UK, arguing that it combined an emphasis on the need to be in paid employment with a moral obligation to do whatever was necessary to become included. Again, the initial breadth of the concept of social exclusion, focusing on the level of social group, and the scale of community, and siting the cause within structures and institutions, was narrowed, with the focus shifting to individuals and their ‘deficits’ (Colley & Hodkinson 2001, pp. 346–7). As Cameron (2005) notes, there developed, among organisations representing marginalised social groups, and academics, a ‘deep and growing unease about the concept of social exclusion’ (p. 194).
For people with IDs, the characterisation of their exclusion – absence from employment, living with families or in other dependent situations, and lack of control and choices – has swiftly become the identification of cause at the individual level – lack of educational qualifications and skills, limited opportunities to become a tenant or home owner, and the absence of self-directed care. Policy responses likewise (unsurprisingly) address this narrow identification of cause: although there is the call for people with IDs to be ‘better understood and supported by the communities within which they live’ (Scottish Executive 2000, p. iv), the policy solution is to provide ‘the same opportunities as others to get a job, to develop as individuals, spend time with family and friends, enjoy life and get the extra support they need to do this’ (Scottish Executive 2000). The process of ‘social inclusion’ for people with IDs is to be guided by the ‘four key principles of rights, independence, choice and control’ (Department of Health 2001, p. 3), to be practically achieved through increased levels of paid employment, independent living and participation in communities (Christie & Mensah-Corker 1999). The initial stress on discrimination, prejudice and vulnerability, implying structural, institutional and sociocultural causes, has been replaced with a focus on individuals with IDs, and the steps they need to take to gain access to – to be included within – mainstream society (Burton & Kagan 2006). If people with IDs therefore do not take part in paid employment, live more independently and engage in community activities, they will become socially excluded and will, along with their families and carers, be largely to blame. The role of institutional structures, social and individual discrimination, and deep-seated abjection towards people of mental difference, have seemingly been erased from the picture.
Cameron (2005) examines the broader problem (noted above): that amidst the flurry of interest around social exclusion, there has been ‘relative silence over the meaning of social inclusion’ (p. 194), which is usually taken to mean ‘normal’ levels of participation in society, that is, the opposite of exclusion. By not defining inclusion and by paying no attention to what people are to be included into, Cameron (2005) goes onto argue, the focus is placed entirely on the excluded individuals and broader structural factors are obscured. So social inclusion becomes more about ‘a set of normative practices’– of consumption and lifestyle, and identity – than the transformation of society (Cameron 2005, p. 400). Bauman (1998) goes so far as to say that social inclusion is an exercise in ‘normative boundary setting’, where what is acceptable, moral, independent and competitive, is separated (by the clear line, as noted above) from what is unacceptable, immoral, dependent and non-competitive. To be socially excluded therefore is to be an exception, to be deviant from the ‘universe of moral obligation’ (Bauman 1998, p. 77).
As noted above, the response to the identified social exclusion of people with IDs in ‘Valuing People’ and ‘The Same as You?’ was to emphasise the importance of affording ‘opportunities’ (rather than, significantly, outcomes) – to secure paid employment to live independently, and to participate in community activities – and so become socially included into mainstream society. Macintyre (2008) has also identified access to education, health and service provision in mainstream contexts as central indicators of social inclusion. However, the ‘success’ of some people with IDs in gaining paid employment, living independently and engaging in their local communities, does not necessarily secure them an automatic status of social inclusion (and the benefits that is meant to imply). A study by Hall (2004) examined the experiences of a sample of people with IDs, some of whom had paid work; it was not commonly a positive experience. If they manage to gain employment (a significant achievement in itself, given that the employment rate for people with IDs is around 10%; Labour Force Survey 2008), people with IDs are more likely to be in low-paid, low-status jobs, and often experience neglect and abuse from their employers and fellow employees. As Hall notes, having paid employment ‘is spatial and economic inclusion, but this also includes the “normality” of discrimination, abuse and social isolation’ (Hall 2004, p. 303). From such studies, MacIntyre (2008) concludes that ‘the whole notion of employment as a route out of social exclusion for people with IDs needs to be problematized . . . [there is a] question as to whether employment does result in greater social inclusion for people with intellectual disabilities’ (p. 51). Also, Hall (2005) shows that to live independently as a person with IDs is not straightforward, and not just because of support needs; denial of tenancies by landlords, problems with benefits and reactions of neighbours can make living alone difficult to sustain [of the 21 people interviewed by Hall (2005), five lived independently in rented or owner-occupied housing – significantly, all five had not accessed their accommodation through the open housing market, but via ID networks or friends].
The discourse of social exclusion/inclusion, which has informed all current UK social policy, has shifted to place less emphasis on the multivariate processes that cause poverty and marginalisation, and to put greater emphasis on the individual, and their social engagement and activity. Cameron (2005) notes that this has been exemplified in the new language of ‘active citizenship’, the actions of individuals in their movement towards becoming socially included, centred on the New Labour axis of ‘rights and responsibilities’. MacIntyre (2008) has criticised this move to citizenship that has to be gained, arguing that ‘the link between citizenship rights and obligations has continued to emphasize paid employment as a key duty or obligation in order to gain entitlement to certain benefits or rights’ (p. 15). The implication for people with IDs (and all social groups deemed to be socially excluded) is that citizenship can only be claimed/achieved if they participate in paid employment. As such, Walmsley (1991) has argued that ‘citizenship, as it has traditionally been conceived, has seemed an impossible status for people with intellectual disabilities’; with the narrow focus on paid employment, this continues to be the case. To be a citizen, to be socially included, requires you to be active, participating, useful and self-reliant (in very specific ways) (MacIntyre 2008; Parr 2008), challenging for most people with IDs, and impossible for many.
From social inclusion to belonging?
The diagnosis of the marginalised social position of people with IDs as ‘social exclusion’ has generated a very limited and even damaging discourse and set of policy responses. The social inclusion of people with IDs, along with other social groups, has centred on the economic and moral expectation to move from dependency on welfare payments into paid employment, to live independently of the care system, and to be an active participant in ‘normal’ social activities in local communities. Fulfilment of these ‘obligations’ grants access for the individual to the rights of citizenship in society. The policy documents that have followed the original ‘Valuing People’ and ‘The Same as You?’, culminating in ‘Valuing People Now: a new three year strategy for people with intellectual disabilities, making it happen for everyone’ (Department of Health 2009), acknowledge the limited progress on opportunities for employment, persistent health inequalities and lack of choices in care and housing, and absence of broader social participation, yet press ahead with the core strategies of social inclusion (centred on employment, independent living and community participation) and active citizenship. As noted above, these standards and expectations are very difficult, if not impossible, for many people with IDs to reach, such is the extent and degree of discrimination and abjection experienced within spaces of mainstream employment, housing and community (as well as the care and support needs of many). Just as significantly, many people with IDs have decided that they do not wish to be in paid work or in independent accommodation, for reasons of poor experiences of employment (Hall 2004), isolation and abuse suffered when living alone (Hall 2005), the complexity of welfare benefits, and the need for practical, social and emotional support. In response, many have begun (and indeed continued) to seek alternative spaces of inclusion.
In previous work, I have examined the ways in which a significant number of people with IDs have expressed their lack of desire and/or ability to reach the standards set by social inclusionary policy by seeking out and developing other ways and spaces within which to experience ‘inclusion’ (Hall 2004, 2005). Several human geographers have identified and studied these new spaces of inclusion, termed ‘safe havens’ (Pinfold 2000) and ‘oases’ (Philo et al. 2005), for people with mental-ill health, where some of those who cannot achieve standard norms of inclusion can gather, share experiences, gain support, be ‘safe’ and crucially be able to be ‘normal’ within an accepting environment. Parr (2000) classifies such spaces as ‘semi-institutional’, suggesting that they lie in-between the segregated locations of the asylum and the ‘integrated’ sites of community. And, further, that their value for people with mental-ill health lies in this status, through satisfying a need for being within a mainstream community location, but with some separateness, privacy and exclusivity.
For people with IDs the situation is slightly different. As is well documented, people with IDs were never present in large numbers in separated institutions, instead largely living with their families within communities. And therefore, unlike people with mental-ill health, there was not the process of mass deinstitutionalisation into local community spaces and the gap in provision that many people with mental health experienced (Dear & Wolch 1987). Instead, people with IDs have experienced community-based care largely within their families, day care facilities, social clubs, colleges and sheltered employment – all in the community, but largely out of sight. The language and tone of ‘Valuing People’ (2001) and ‘The Same as You?’ (2000) has judged such practices and spaces of care as isolating, exclusionary and denying access to citizenship for people with IDs (Burton & Kagan 2006). Social inclusionary principles of attaining work, living independently and being active participants in communities, are seemingly pitched against the dominant model of care for people with IDs. And there is growing pressure on separated ID exclusive care spaces (day care, group homes and sheltered employment) and organisations to be remodelled or even closed in favour of more ‘open’ forms of support, accommodation and support.
This paper is not concerned with the benefits and limitations of the current social care system, but rather with identifying the possibilities that some elements of the provision of care (in its broadest sense) can provide for a significant number of people with IDs. As for people with mental-ill health, can spaces of existing care and activity be reimagined as ‘safe havens’ and ‘oases’? To examine this, the paper will consider the notion of ‘belonging’ in place of ‘inclusion’, as perhaps a more useful way of thinking about what people with IDs want from their spaces of support and care and, further, how they can relate to and find a place within wider society. The paper will then introduce two case studies of such possible spaces of inclusion.
As noted above, people with IDs have experienced long-term personal, social and institutional discrimination, resulting in their absence from mainstream spaces of employment, residence and leisure. At the core of this discrimination, arguably, is a powerful sense of difference. Sibley (1995) argues that social and spatial exclusion of particular groups – marked by ethnic or sexual difference, for example, by dominant society, comes from feelings of ‘anxiety, nervousness or fear’ (p. 3) regarding these groups and their bodies/minds. Certain groups of people can become associated with fear or ‘repulsion’, generated through emerging individual and collective notions of ‘otherness’. Kristeva (1982) uses the term ‘abjection’ to describe how people define what constantly threatens their sense of self – things that are ‘out of place’– and so produce a desire to be distanced from or even to ‘expel the abject’ (cited in Sibley 1995, p. 8). For Sibley (1995), such identification of difference has been expressed in the demarcation of boundaries in society, ‘beyond which lie those who do not belong’ (p. 4); for people with mental-ill health and people with IDs, these ‘other’ people were restricted to ‘other’ places, either within asylums or in separated community facilities. People with mental impairment are ‘in varying degrees “other” and beyond the bounds of normal society according to some narrower definitions of normality’ (Sibley 1995, p. 69), drawing on the notion of mental competence, and its affordance of rationality and an autonomous self, as perhaps the most powerful demarcator in society (Parr & Butler 1999) [the concept of ‘competence’ is central to the Mental Health Act 2007, and the Adults with Incapacity (Scotland) Act 2000, which define the balance between individual ‘rights’ and societal ‘safeguards’].
For people with IDs, the historio-cultural ‘starting point’ is that they are understood as ‘other’, as abject, as potentially dangerous to the social order, as needing to be separated out and bounded, in short designated as not ‘belonging’. Sibley (1995) makes a clear connection between this sense of not belonging and the social and spatial exclusion that people experience (and the excluded positions that society imagines them as ‘appropriately’ being in), and the social spaces – employment, transport, care, health, leisure – that are shaped and designed to reflect this. This close relationship between the processes of exclusion and the status of not belonging of course poses questions for the policies of ‘social inclusion’– to identify and promote routes to inclusion for people and groups who sense that they do not belong is hugely problematic. That people seek out other forms and spaces of ‘inclusion’, where a sense of belonging can be gained, is therefore perhaps not surprising.
Parr (2008) uses examples of arts and environmental projects in the UK to examine the experiences of inclusion and belonging for people with mental-ill health; in these she identifies some important concepts and issues relevant to the case studies of ID projects subsequently discussed. In the two arts projects (in Dundee and Glasgow) Parr (2008) sets out how people with mental-ill health take part in self-directed arts activities, with a view to both produce art work ‘for itself’ and for exhibition and sale. Drawing on Probyn (1996), Parr observes that the people involved ‘yearn’ for ‘some sort of attachment, be it to other people, places or modes of being’ (p. 19, emphasis added). Those involved in the project experience friendship and communal support from those taking part with them, generating a possible ‘bonding’ form of social capital. In addition to this individual and communal belonging within the project (generating enhanced self-esteem and strengthened self-identity), and feelings of safety and a reassurance of accepted ‘normality’ within these private spaces and moments, the participants have irregular opportunities for inclusion and belonging to the wider cultural spaces and networks of the cities when exhibitions are held on equal and non-marginal terms, for both those with and without mental-ill health (a possible ‘bridging’ form of social capital). However, Parr is aware that: first, the connection between ‘creativity and belonging is an uncertain and unstable endeavour’ (p. 130) – there is no guarantee of acceptance and attachment in such moments and spaces; second, that there is a tension between the inevitable (and potentially advantageous and empowering) categorisation of the art as ‘special’ or ‘different’ and the desire to be judged simply as an ‘artist’; and, third, that wider social belonging, beyond the artistic social and cultural ‘world’ (where unusual behaviour and expression are commonly accepted and often celebrated) is much more difficult to secure.
In the environmental projects (in Glasgow and Nottingham) the feelings of therapeutic benefit and generation of within group belonging are seemingly in tension with the expectation to be socially active and useful (Parr 2008). The participants at the sites stressed the individual physical and mental health benefits of ‘nature work’ and the inherently relational experience of gardening with others with mental-ill health. The Glasgow project, restoring urban green spaces, while providing a sense of individual and communal ‘insider’ belonging, was also very much in wider public view and, as such, could, Parr argues, ‘help convince local residents that people with mental health problems are useful citizens contributing to the improvement of community life’ (2008, p. 96). For many of those involved, they gained self-esteem by being understood as gardeners first (before people with mental-ill health), as Parr notes, ‘patients of mental health services are arguably gardening their way to sustainable community positions or social and associative citizenship’ (p. 100, emphasis added). Crucially, this implies a rather different notion of ‘citizenship’ to the dominant individual idea of gaining a place within the social body. Wilton (1998) suggests that ‘proximate exposure to difference’ (for the local population) can help overcome the psychological unease regarding those bodies and minds seemingly threatening to the boundaries of the self. This could begin to heal the disconnect identified by Sibley (1995) between inclusion and belonging – if ‘othered’ individuals begin to feel, through their activities and social relations with mainstream society, that they are not so distant (physically and metaphorically) from the society which excludes them, then a sense of belonging is possible. Parr reflects on this possibility by suggesting that the extension of belonging beyond the gardening activity itself could, perhaps unlike the more limited art projects described above, involve broader ‘significant social reinscription’ of those with mental-ill health in Glasgow and beyond. This reinscription could involve people – gardeners and perhaps artists – as insiders, as belonging (to a range of networks across society) and included (within a series of social and cultural spaces and representations, but not in any way ‘fully’ included within every space and aspect of society, a clearly impossible position for any person). However, as gardening and art are seen as culturally a ‘good thing’, is this the acceptable face of inclusion and belonging, what Parr terms ‘pretty active citizenship’ (p. 93)?
Case studies of inclusion and belonging for people with intellectual disabilities
Parr (2008) is clearly focused on people with mental-ill health and while there are many overlapping issues and concerns about social inclusionary policy, for people with IDs there are distinct issues, which two case studies aim to capture. The case studies are ongoing, and while the data collection phase is complete, little analysis has so far been undertaken. So what is presented here is necessarily general and brief; future papers will discuss the findings in detail. Both projects are arts-related, the first a theatre company and the second an arts and crafts organisation, and were chosen because both, in very different ways, provide an alternative way of understanding, practising and promoting ‘inclusion’[in a similar way to Parr's (2008) chosen sites]. In addition, the arts were chosen for three reasons: first, because there is a long-standing traditional role of artistic practice in the therapeutic ‘treatment’ of people with IDs, and I was keen to explore and critique this (Chesner 1995); second, because artistic work provides opportunities for expression, performance and connection with the public, which can stimulate interest and debate (Goodley & Moore 2002); and, third, because as a researcher I was keen to consider overtly positive (yet not uncontested) examples of activities and outcomes for people with IDs. People with IDs remain, despite almost a decade of inclusion policy, in marginalised positions in society, and the identification of activities, spaces and moments of connection to dominant society are important to capture if these positions are to be changed.
The first case study, ‘Lung Ha's’, is a small, yet high profile theatre company, which devises and performs theatre at major mainstream venues in Edinburgh and Glasgow, plus tours across Scotland and in Europe; it also undertakes issue-based ‘forum theatre’ events for a range of people and organisations (within and beyond the ID arena). Lung Ha's define themselves as a ‘professional theatre company’ (they are funded by the state in a mix of Scottish Arts Council and City of Edinburgh Council funding; the staff are paid, the actors unwaged primarily for reasons of benefit entitlement), undertaking auditions each year to select those individuals (25 in total) with the most ‘ability’ (in the broadest sense) and, most crucially, it is stressed by the company, enthusiasm to participate, to join the company for the year and the one large group production. The company employs professional musicians, writers, designers, stage managers, prop makers and so on, to ensure that the show has high production values. Such high quality support is central to the presentation of the participants as actors first (before people with IDs). As noted above, I am yet to analyse the data gathered (a set of interviews with the actors, staff, artistic director, volunteer supporters and funders; and a period of ethnography across the rehearsal and performance period of a full company production), but several key findings have emerged, some of which resonate with the themes identified by Parr (2008), and others which are distinct. First, the membership of the company and the spaces of rehearsal are ‘intellectual disability exclusive’ and separated from mainstream society – this, it is claimed, is crucial to its operation and artistic and social success as the people with IDs involved are in supportive, safe and non-judgemental surroundings, very different to the normality, for many, of their everyday lives (there is a discussion within the company regarding working with a non-disabled theatre company, and the opportunities for crossing boundaries, but also the risks of reproducing the marginalisation of the disabled actors). Second, although the arts are now seen as much more than a therapeutic activity, offering some vocational skills (Goodlad et al. 2002), theatre in itself is a non-employment activity, with the only objective outcome the performance; a few of the actors had some form of employment, or related activity, but for many Lung Ha's is their work and their life, a situation they are very happy with. Third, like the gardening activity discussed by Parr (2008), theatre is a valued activity by the dominant middle class, and so is seen as an acceptable route to becoming a ‘pretty’ active citizen. This can be seen either critically as diverting attention from the deep-seated culturally marginalised position of people with IDs, or alternatively as a useful broadening out of social inclusion from its core concerns with paid employment, independent living and (unspecified) ‘participation in local communities’; disability-exclusive theatre is, of course, a form of participation, but perhaps not the one conceived of by the Government. Fourth, the theatre performances are in major mainstream arts spaces, such as the ‘Traverse’ in Edinburgh (with a reputation for new writing and performance), not in community centres or church halls, so ‘showcasing’ ID to a wider theatre-going public (and to other people with IDs, who often constitute a significant part of the audience), and perhaps producing a degree of ‘reinscription’ of ID (Parr 2008). Fifth, the actors in the company gain a form of inclusion within theatre networks in Edinburgh and Glasgow (and further afield when on tour) and also potentially respect from non-disabled actors (some of whom work as volunteers at rehearsals). Sixth, and very importantly, people form friendships and gain support (a form of ‘bonding’ social capital) within the ‘safe spaces’ of the rehearsal room, and the networks of the company, which can afford them confidence and a strengthened sense of self-identity to engage with an often difficult and discriminatory mainstream world (Hall 2005).
The second case study is an arts and crafts organisation, ‘Garvald’, based in two sites in south-west Edinburgh (interviews were carried out with staff and members on both sites, with further interviews with the organisation's management, and City of Edinburgh Council, the principal funder; ethnographic data were also collected, over a two week period). One site – a former primary school – is in the midst of a mainstream community, with the other hidden away behind a car showroom in a less accessible location. The former site focuses on painting, pottery, glass-making and weaving; the latter on joinery, baking and puppet making. Both are ID ‘exclusive’ in terms of the participants, understood as a crucial element of their approach, providing a safe and supportive ‘community’ of ‘members’ (as the participants are termed) and staff to allow for productive and therapeutic experiences. Significantly, both have a café where members, staff and guests (including myself during fieldwork) meet for lunch every day, with vegetarian food prepared by a group of members. For most people who attend the sites, the activities, companionship, support and calm atmosphere are important, providing a space of safety and security, along with the sense of being productive. Significantly, while there is a flow of outputs from the workshops – the bakery, for example, produces bread and cakes sold in specialist food shops across Edinburgh – for many who attend the work is primarily therapeutic, done to a slow or varied pace, with only gentle pressure from staff to complete a task. The head of the organisation emphasised the production of art ‘work’, the high prices of some of the paintings produced, the public exhibitions held, the production and sales of the bakery (celebrated in an award-winning documentary film), and the shop in the middle-class Morningside area. All this, it is claimed, builds the artistic reputation of the organisation and its members, and people with IDs more generally, in a possible ‘reinscripting’. The local authority, the principal funder, as part of a wider restructuring of care provision, is suggesting that Garvald becomes a centre primarily for those with more severe ID needs, with those with moderate needs encouraged to receive more one-to-one care in mainstream spaces. A consultation of members at one site (at which I was present) revealed concerns about this, with strong feelings of attachment, structure and routine, opportunities for friendship and communality expressed. Within the spaces of the organisation, and in moments of connection to mainstream arts and crafts spaces and networks, people with IDs were experiencing feelings of attachment and belonging. This is not ‘social inclusion’ to fulfil the standard criteria, but rather inclusion within particular spaces and groupings, where ID is valued and celebrated.
As noted above, analysis of the data is yet to be completed. When it is, a full assessment of the nature of the ‘inclusion’ experienced, and the role of ‘belonging’ in the situations and experiences of the people with IDs in both case studies will be made. However, some preliminary conclusions can be drawn.
First, what ‘social inclusion’is is being contested and redrawn through the activities of the projects. For the Artistic Director of the theatre company, to be ‘included’ is to be part of the theatre ‘world’ in Edinburgh and Scotland, to be part of cultural networks, to be seen as an ‘actor’. The arts and crafts organisation, while also acknowledging the access to artistic/craft social networks for their members, through exhibitions and commissions, stress inclusion within their community or ‘family’. The ‘belonging’ that people yearn for and experience is largely that within the organisations, within the ID exclusive spaces and activities. The development of belonging to wider society is much more limited, but is possibly beginning to happen through the production of socially-valued art and theatrical ‘work’, and occasional presence in mainstream spaces of theatres and art galleries. In this way, there is a small-scale ‘social reinscription’ of ID occurring.
Most people with IDs do not want to or cannot seek out the dominant routes to social inclusion – primarily paid work and independent living – yet still wish to be ‘attached’ and to ‘belong’. The case study projects are spaces within which people can attain the feeling and status of belonging, without being exposed to the rigours associated with ‘normal’ social inclusionary positions (Hall 2004).
One key limitation is the lack of clear transformation of the broader structures and processes that sustain the exclusion, discrimination and abjection of people with IDs. Parr (2008) suggests that the activities of the volunteers in the urban green space project mean that they were ‘gardening their way to sustainable community positions’ (p. 96) and so gaining greater social status. This may be the case for the individuals involved in this particular project (and the ones described above), but for other people with mental health problems, and also people with IDs, there are many other people, and many other places and spaces, where absence of citizenship, feelings of not belonging and social exclusion, are experienced. By engaging in such activities do people with IDs slowly but surely challenge the stereotypes and intense ‘othering’ that is so closely associated with socio-spatial exclusion (Sibley 1995)? And is this a more effective pathway to inclusion and belonging than people with IDs getting a job and living independently?
For Probyn (1996) to ‘belong’ is a fundamentally social thing, which happens in everyday life and connections with people in a range of spaces. Crucially, then, to achieve belonging is much more than being socially included (as it is normally envisaged). To belong is to feel attached, to feel valued, and to have a sense of insiderness and proximity to ‘majority’ people, activities, networks and spaces. And it is arguably only with people with IDs (with support and advocacy) taking part in continuous active processes of insiderness and proximity, perhaps through projects such as those outlined above, that the deeply-set structures of society can be gradually dismantled.