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The entangled geographies of social exclusion/inclusion for people with learning disabilities
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.
... In 2006, the UN CRPD-one of eight human rights treaties representing binding international law-was enthusiastically received by the global community (Winzer & Mazurek, 2015). Despite this enthusiasm, progress on inclusion has been slow and some have argued that a major obstacle impacting progress toward the universal standards for inclusion set forth by the CRPD is ambiguity in definition of inclusion (Bigby, 2012;Hall, 2005;Meiniger, 2014;Simplican et al., 2015). Nonetheless, the resounding impact of the CRPD on policy changes around the world has demonstrated the treaties' strong global support and influence; albeit lacking support for its universal approach to inclusion and ability to truly meet the needs of persons with disabilities in different contexts (Verdugo et al., 2017). ...
... (c) concepts of community and participation may vary significantly across cultures; and (d) pathways to inclusion that follow normative social standards may not be favored by all persons with disabilities (Carey, 2011;Hall, 2005;Hall, 2010a;MacIntyre, 2008;Meininger, 2013). The primary themes related to barriers impacting the social inclusion of people with disabilities included: Lack of knowledge and training on how to support individuals with disabilities (Arrah & Swain, 2014;Forlin, 2006;Ferguson, 2008;Ring & Travers, 2005); lack of resources to support persons with disabilities (Ainscow & Sandill, 2010;Campos et al., 2014;Miles & Ahuja 2007;Mukhopadhyay, et al., 2012); and, inaccessible environments and negative perceptions of persons with disabilities (Kuyini & Mangope, 2011;Lamichhane, 2013;Mosia, 2014). ...
... This study's results helped me to build on this observation and support the arguments made by other researchers. Specifically, that there is a need to understand inclusion as a concept that is shaped by a variety of different factors including context, lived realities, variations in concepts of community and participation, and pathways to inclusion that lie outside normative standards (Carey, 2011;Hall, 2005;MacIntyre, 2008;Meininger, 2013;Meekosha & Soldatic, 2011, Meekosha, 2008Rioux et al., 2019). ...
Despite international policy efforts aimed at promoting their human rights, individuals with disabilities continue to face many adversities. The influence of global initiatives for supporting people with disabilities is well documented, but successful outcomes have been variable, especially in the Global South. Some researchers have suggested that solutions to this problem could come from organizations providing support services for people with disabilities, because they are the point where international policies and individual factors meet. In this qualitative comparative case study, data were drawn from the online presence of an autism center (based in the United States and Ghana) and a grassroots Ghanaian special education school to explore (a) how each of the organizations interpreted inclusion for persons with disabilities, and (b) to
understand the contextual and cultural factors that influenced how inclusion was interpreted, promoted, practiced, and communicated by each organization. Using a qualitative content analysis, I found similarities across each organization in how inclusion of persons with disabilities is interpreted and promoted, but different influencing factors related to the organizational services and activities at each organization. The results also highlight key differences between each organization and offers suggestive evidence that a grassroots—bottom up—organizational approach to developing support services for persons with disabilities could help to promote social and community inclusion for persons with disabilities in Ghana.
... Ces processus sont conçus comme relevant d'un mélange complexe de situations et d'expériences, qui changent selon les contextes dans lesquelles elles prennent corps et au gré des interactions sociales qui les construisent. Ils sont ainsi complexes, « entremêlés » (Hall, 2005), « interreliés » (Billette et al, 2012a) de sorte qu'un même individu peut faire l'expérience simultanée de diverses formes d'inclusion et d'exclusion. Ces expériences dessinent alors des géographies complexes, « cachées » (Parr, 2000), que l'analyse des pratiques spatiales et la mise en lumière des rapports entre l'individu et la ville permet de révéler. 2 Interroger l'accessibilité des espaces et donc les possibilités de vivre avec et parmi les autres dans la ville 2.1 L'appropriation comme clef de lecture des pratiques de la ville « Les inégalités sont peut-être encore plus importantes, quoique parfois moins visibles, quand on appréhende l'appropriation comme maîtrise de son propre espace de vie, autrement dit comme usage autonome. ...
... L'atmosphère qui y règne les aide à se sentir mieux, à évacuer leurs émotions négatives et à se recentrer. Nombreux sont les auteurs comme Duff à insister sur l'importance pour les personnes en fragilité psychique d'avoir accès au sein de la communauté à des espaces capacitants (Curtis, 2010), des « safe havens » (Pinfold, 2000) ou des « spaces of refuge » 76 (Hall, 2005), autant d'expressions qui désignent toutes des espaces qui contribuent à leur inclusion sociale et/ou leur bien-être. ...
... Qui me met en contact (F, 1). On retrouve ainsi l'idée, évoquée dans le chapitre 2, d'un entremêlement des expériences d'inclusion et d'exclusion au sein des micro-géographies des individus, mis en avant notamment dans les travaux de géographie sociale de la santé mentale (Hall, 2005 ;Parr, 2000 ;Parr et al, 2004). Le GEM permet de sortir et de diversifier les géographies quotidiennes, tout en rappelant aux personnes qu'elles sont confrontées à des mécanismes d'exclusion qui les empêchent de pouvoir s'approprier la ville par elles-mêmes. ...
En posant un regard scientifique sur le vécu quotidien d’une population souvent négligée en sciences sociales et dans le débat public, la thèse vise à nourrir la réflexion sur l’inclusion dans la ville des personnes en fragilité psychique vieillissantes. L’objectif est d’interroger le rapport qu’elles entretiennent avec la ville, à travers l’étude de leurs géographies quotidiennes. Peuvent-elles pratiquer et s’approprier la ville comme elles le voudraient ? Trouvent-elles une place qui leur convient en tant qu’habitantes ? La recherche consiste en une étude qualitative des espaces de vie de 14 personnes en fragilité psychique vieillissantes (+50 ans) vivant dans une petite ville française ou dans les villages alentour. Ces personnes sont aussi adhérentes d’un Groupe d’Entraide Mutuelle (GEM), un dispositif d’entraide entre pairs organisé sous forme associative. La collecte des données s’appuie sur plusieurs mois d’observation participante au sein du GEM et sur deux séries d’entretiens (dont l’une avec réalisation d’une carte mentale) auprès des participants. L’analyse montre la multitude de facteurs contraignant les pratiques des participants, en particulier au regard de leur vie sociale, des loisirs et du logement. Les participants évoquent un sentiment mitigé d’appropriation des espaces, avec des géographies quotidiennes marquées par une alternance constante entre prises et manques de prises. L’analyse met aussi en lumière le statut particulier du GEM au sein de leurs espaces de vie. Celui-ci offre un espace-ressource dans la ville que les participants peuvent s’approprier. Ce dispositif, ouvert sur la ville, leur permet également de profiter de lieux où ils n’iraient pas seuls ou bien d’eux-mêmes, contribuant ainsi à diversifier et à accroître le périmètre des espaces de vie. L’analyse souligne la manière dont les adhérents se sont saisis collectivement de leur GEM pour agir eux-mêmes sur la ville et la rendre davantage inclusive.
... Others have become socially isolated because they have little to no contact with their family or friends (McConkey, 2007). Hall (2005) discovered that social inclusion and exclusion were experienced in unexpected environments: "Within places of seeming exclusioncare homes and non-paid work-can be found spaces of inclusion, and within apparent contexts of inclusion-independent living and paid employment-exclusion is commonly experienced" (p. 113). ...
... Self-advocacy is an important aspect of social inclusion. Hall (2005) found that those who have the knowledge and skills to advocate for themselves are better able to achieve social inclusion. Participants in the present study determined that if people with ID wanted change, they should ask for it themselves. ...
... The present study confirms that awareness-raising and opportunities to self-advocate can enhance the social inclusion of people with ID (Hall, 2005). Awareness-raising reduces the misconceptions community members have about people with ID, teaches them how to make accommodations, and emphasizes their similarities. ...
The purpose of this phenomenological study was to describe the social inclusion of young adults with intellectual disabilities. Participants included 14 adults from 21 to 35 years of age with a mild or moderate intellectual disability who were able to verbally communicate their thoughts and experiences. I ensued with open-ended questions about their involvement in activities, relationships, and sense of belonging. The findings consisted of themes and descriptions of their experiences of social inclusion. The themes included living accommodations and transportation, work and volunteer experiences, involvement in activities, relationships and social interactions, sense of belonging, social roles, and influential factors. I wrote descriptions of their experiences to understand how to enhance the social inclusion of young adults with intellectual disabilities.
... However, such references to socially accepted behaviour and cultural meanings do not align with the experiences of people with intellectual disabilities. Being noticed and welcomed is important to them, as they have hurtful experiences of being ignored or rejected in public places (Bredewold et al., 2016;Hall, 2005;Ootes, 2012). "Non-encounters" are interpreted as a rejection of their presence and confirmation of their stigma. ...
... In such a situation, the non-encounter does not constitute a relationship that is part of life as a citizen, but marks a situation of social exclusion. This resonates with the situation of people with intellectual disabilities, who are physically present in the community but remain in a segregated social space (Clement & Bigby, 2009;Hall, 2005). The "non-encounter" can thus both be the backdrop of everyday public life, which is filled with strangerships, or an enforcement of the stigmatised identity as a "stranger." ...
... Often, conviviality is not reached and positive encounters do not occur (Wiesel & Bigby, 2016). The concept of non-encounter provides a perspective on the ways places and situations can be unwelcoming or exclusionary for people with intellectual disabilities (Hall, 2005;Wiesel & Bigby, 2016). The experiences of the non-person's treatment of uncomfortable experiences of othering can be very hurtful and may sometimes not outweigh the potential of convivial encounters. ...
Background: Often, people with and without intellectual disabilities do not mingle. Research has mostly focused on how to foster "convivial encounters" for social inclusion, but further thinking is needed on situations in which potential encounters do not take place.
Method: Discussion of philosophical and urban sociological literature on social interaction in public.
Results: In non-encounters, people give subtle non-verbal cues in situations of physical proximity. This can both lead to hurtful experiences of invisibility and positive experiences of micro-recognition. In spite of best efforts, people can position others unintendedly as "strange," which leads to hesitation.
Conclusions: This analysis highlights how non-encounters can be both socially inclusive and exclusive. In spite of best intentions, interactions in public spaces also come with tensions. The question of how to transform social culture to encompass difference remains significant.
... Although the social geographies of people with cognitive disability have received much attention (Holt, 2010;Hall, 2004Hall, , 2005;Power, 2010), the focus has been on fixed spaces of support, employment and the neighbourhood. This research contributes to emerging understandings of the mobility of people with cognitive disability; importantly, this mobility is an integral part of people's lives and development of their identity and sense of exclusion and belonging (Feldman et al., 2020). ...
... As people undertake these activities, they are spending increasing amounts of time in community spaces, including local streets, shops, parks and leisure areas/centres (Power & Bartlett, 2018;Wiesel et al., 2013). For people with cognitive disability, community spaces and public transportation can be complex and sometimes challenging, with physical, social and emotional barriers to movement, participation and senses of belonging (Hall, 2005;Holt, 2010;Power & Hall, 2018). ...
In a policy context of personalisation, disability support organisations recognise the increasingly contentious nature of clustering people according to disability. Instead, they are placing more emphasis on activities that promote community inclusion. Accordingly, the work between people with cognitive disability and their support workers is increasingly mobile. In this context, drawing on research using a conceptual framework based in recognition theory and social geography,
this paper explores how the experience of liminal space-time influenced the working relationships between young people with cognitive disability and their support workers. It found that the pairs used liminal spacetime to build their relationships, creating conditions for mutual recognition to occur, whereby they experienced feeling cared about, respected and valued. These activities and negotiations were mediated at the institutional level by the policies and practices of the disability
services. The significance of liminal moments were noted at the interpersonal level, both explicitly and tacitly; but not well taken account of at the institutional level. This disjuncture opens both opportunity and risk to young people and support workers. Appreciating the richness of
liminal space-time for identity development opens the way for young people and support workers to use its productive potential.
... Similarly, people with learning disabilities often depend on others for their care and support and have limited financial means to participate in community life (Power, 2008). As Hall (2005) observes, this leaves many people with learning disabilities in an impossible position, typified by everyday experiences of social exclusion on the F I G U R E 7 Collage made by a member of the research group -to illustrate feelings of belonging F I G U R E 8 Image drawn by a member of the advisory group during an arts-based activity to illustrate the importance of being supported to make and meet friends F I G U R E 9 Photograph taken by the research group to depict 'helping hands' and the importance of volunteering and 'giving something back' one hand, and limited opportunities to meet the demands of social inclusion (narrowly defined) on the other. Disability scholars, people with learning disabilities, their families and allies are, therefore, increasingly turning to the concept of belonging as a way of describing the experiences and aspirations of people with learning disabilities and to challenge the narrowness of the goal of inclusion. ...
... In the literature, this is illustrated with examples of people with learning disabilities engaging in community-based activities, such as art-based projects, gardening, environmental projects and community farming activities (e.g. Hall, 2005Hall, , 2010Hall, 2013;Hall & Wilton, 2017;Parr, 2008;Kaley et al., 2019). ...
1.1 Background: his journal article draws on findings from a research project that examined how people with learning disabilities and their allies were seeking to build a sense of belonging. We wanted to focus on the concept of “belonging” in the context of personalisation and reduced government social care funding. Specifically, we sought to understand how people with learning disabilities and their supporters were coming together to “self-build” networks of support including friendship clubs and self-advocacy groups to enable a greater sense of belonging in their local communities.
1.2 Methods: qualitative interviews were conducted with seven local authority representatives across four case study areas in the UK, as well as 39 staff across 29 organisations providing a range of day and evening support and activities. We also talked to 43 people with learning disabilities across the four areas about their experiences.
1.3 Findings: our findings demonstrate how belonging involves a complex configuration of actors, places, times, relationships and institutional roles (much like the ingredients in a cake). The ways in which belonging intersects with agency and choice was also identified as an important and novel finding of our study.
1.4 Conclusion: while belonging is often presented to people as a desirable and realisable outcome of social inclusion policies, cuts in funding and a lack of appropriate support frustrate people's desires to meaningfully belong with other people in their local community. This demonstrates the importance of supporting social environments that meet people's needs for social connectedness and belonging.<br/
... Based on the information we gathered, it seems that Special Olympics Pakistan may serve as a critical collective space where people with intellectual disability and their families connect with others like them away from the dominant group/families without a member with intellectual disability (Wallin-Ruschman and Patka 2016). Another way to understand the notion of a critical collective space is through the concept of alternative settings or network of safe havens where a counter space is created when the mainstream/dominant environment is not responsive to needs (Hall 2005;Pinfold 2000). These spaces allow members to build social support networks and share strategies for engaging with marginalizing mainstream settings. ...
... It is often assumed that when people with intellectual disability participate within mainstream settings the experience will be more positive than if they are in a separate segregated setting. The expectations is that they will be meaningfully included in activities in the setting (Hall 2005;Power and Bartlett 2018). The guardians are aware that this is not always the reality, given their conversations about being overprotective and not wanting the athletes to be mistreated. ...
The present study sought to understand the experiences of five Special Olympics Pakistan athletes and their guardians. Together, we explored the role of the Special Olympics Pakistan in their lives and how they envision expanding the work of the organization to promote independent living among Pakistani Special Olympics athletes. The study was guided by a participatory approach using PhotoVoice where participants were involved in all phases of the research process. Through thematic analysis, we present the primary theme of Using Special Olympics Pakistan to Further the Intellectual Disability Movement, which focuses on how Special Olympics Pakistan has facilitated the development of sense of community, actions toward independence and goals for expanding the organization’s work. We discuss implications for research and practice.
• Points of interest
• Pakistani Special Olympics athletes and their guardians were involved in all parts of this study which focused on gathering information through group meetings.
• Pakistani Special Olympics athletes and guardians reported that the Special Olympics Pakistan helped them make friends, feel a part of a community, and learn how to be more independent.
• This study found that Special Olympics Pakistan has taught athletes skills to help them be a part of mainstream society such as finding jobs.
• Guardians reported that the Special Olympics helped them understand disability issues and find ways to work together to help improve the lives of people with intellectual disability.
• This study is important because it provides information on disability issues in Pakistan from people with intellectual disabilities and describes how Special Olympics Pakistan is helping people with intellectual disability be a part of mainstream society.
... In geographical scholarship there has been a long engagement with the sociocultural dimensions of decision-making by people with cognitive disability. Geographical analysis has focused more broadly on issues surrounding the selfdetermination of people with cognitive disability, through analyses of their agency in 'self-building' spaces (Power & Bartlett, 2018); participation in art (Macpherson et al., 2016), peer-support and self-advocacy (Power et al., 2016); the negotiation of everyday spaces (Hall, 2005;Holt, 2007;Power & Bartlett, 2018;Wiesel & Bigby, 2016;Wilton et al., 2018); and the co-production of knowledge (Holt et al., 2019;Murray, 2019). Despite geographers' ongoing interest in questions surrounding the self-determination of people with cognitive disability, explicit and direct links to supported decision-making have rarely, if ever, been drawn. ...
... In conclusion, our paper contributes a new perspective to geographers' ongoing interest in questions surrounding the self-determination of people with disability. Complementing geographers' interest in people with cognitive disabilities' negotiation of everyday spaces as a key feature of their self-determination (Hall, 2005;Holt, 2007;Power & Bartlett, 2018;Wiesel & Bigby, 2016;Wilton et al., 2018), our paper highlights the significant but often overlooked temporalities of self-determination. Our analysis points to the need for careful geographical engagement with the complexity of decision-making by people with cognitive disability, acknowledging the elusive lines that often separate 'support' from 'substitution' of decision-making. ...
In many societies, people with cognitive disability have been presumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geographical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision-making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.
... Social networks are also associated with happiness, selfconfidence, mental health and leisure activities (Forrester-Jones et al., 2006) and are deemed crucial wellbeing, social inclusion and tackling disadvantage across the life-course cannot be understated (Bele and Kvalsund, 2016). Despite this, non-disabled people rarely consider the importance of social networks for adults with learning disabilities (Dunbar, 2015;Emerson and McVilly, 2004;Hall, 2005). ...
Exploring and meeting the needs of people with learning disabilities in the New Forest and surrounding areas regarding their activities.
... De mate waarin wonen in de gemeenschap een positieve invloed heeft op inclusie en de levenskwaliteit van mensen met een handicap is mede afhankelijk van de specifieke ruimtelijke context waarin mensen terechtkomen (Hall, 2005), maar is daar niet toe beperkt. Met andere woorden: fysieke inclusie biedt geen garantie op sociale inclusie. ...
In deze bijdrage wordt ingegaan op de dominante interpretatie van het begrip de-institutionalisering, waar deze aan heeft bijgedragen, maar ook wat deze niet belicht. Van daaruit wordt gepleit voor een sociaal-ruimtelijk perspectief, en wordt beschreven wat dat kan betekenen in het denken en handelen van sociaal werkers. Daarop wordt een casus toegelicht van een residentiële zorgaanbieder die de woonzorgomgeving wil transformeren naar een inclusieve leefomgeving, waarbij ook wordt ingegaan op de manier waarop sociaal-ruimtelijk onderzoek in dit proces kan bijdragen aan een begrip van de-institutionalisering. Het vraagt van zowel sociaalwerkbeleid, - praktijk en -onderzoeksgebied om een ander handelen te verbeelden. En het is in die geest dat deze bijdrage afsluit met een verkenning van mogelijkheden van het retrospectieve denken over de toekomst.
... Disabled individuals are exposed to various disadvantages and social exclusion (Erdoğan & Köten 2014;Repke & Ipsen 2020). Disabled individuals cannot participate in social life due to the difficulties they experience in transportation and working life, and the discrimination they face in various areas (Bezyak et al., 2017;Hall, 2005;Vornholt et al., 2013). Under these conditions, sports will facilitate the participation of disabled individuals in social life. ...
Bu çalışmanın amacı, fiziksel engelli bireylerde yaşam kalitesi ve toplumsal katılımın spor yapma ve yapmama durumuna göre farklılaşıp farklılaşmadığını araştırmaktır. Çalışmaya, Engelliler Spor Kulübünün lisanslı 45 fiziksel engelli sporcusu ve 30 sedanter (spor yapmayan) fiziksel engelli birey katılmıştır. Spor yapan ve yapmayan engelli bireylerin yaşam kalitelerini ölçmek amacıyla "Yaşam Kalitesi Ölçeği Kısa Form (SF-36)", toplumsal katılımını değerlendirmek üzere "Craig Engellilik Değerlendirme Bildirme Tekniği-Kısa Form (CHART-SF)" ve araştırmacılar tarafından geliştirilen "Kişisel Bilgi Formu" kullanılmıştır. Verilerin analizinde betimsel istatistik, Mann Whitney U testi ve Spearman korelasyon testi uygulanmıştır. Araştırmanın sonucunda, spor yapanlar lehine yaşam kalitesi ağrı ve genel sağlık boyutu ile toplumsal katılımda mobilite boyutunun istatistiksel olarak anlamlı bir farklılık gösterdiği bulunmuştur (p<0.05). Spor yapmanın, fiziksel engelli bireylerin yaşam kalitesi ve toplumsal katılımını olumlu yönde etkileyen bir unsur olduğu görülmektedir. Engelli bireylerin spor faaliyetlerine katılımı artırılmalıdır.
... Studies have shown that self-worth can grow as a result of social inclusion as it instils a sense of belonging and lead to greater happiness (Cobigo et al., 2012). However, other research has shown that it can also have downsides, including an increased sense of loneliness (Hall, 2005). For PWCs, social inclusion allows resources to be accessed and opportunities to arise that enable for PWCs to achieve a decent standard of living socially, financially and culturally. ...
ABSTRACT
This study sought to understand the travel experiences and expectations of wheelchair tourists. The increasing demand for wheelchair tourists to visit natural destinations, the barriers while
travelling, and the inclusivity of tourism are the main motivations of this study. While previous studies have investigated accessibility in tourism, they have rarely focused on inclusive tourism, especially from wheelchair tourists’ perspective. Driven by social constructivism theory, this research presents the results of the experiences of Indonesian wheelchair tourists in natural destinations by utilising the exclusion-inclusion and critical theory. In this emancipatory disability research, snowball sampling was employed to conduct semi-structured interviews with ten wheelchair users, and the empirical materials were thematically analysed. The findings
revealed that participants were excited about travelling, but the barriers made wheelchair tourists more selective in choosing natural destinations. Inclusivity was perceived to be an issue that required the achievement of a cultural shift. While accessibility was deemed necessary, service and concern from tourism providers and other tourists were crucial at the lower experience level during travel. A ‘friend in tourism’ was reported as necessary to push toward inclusivity and equality in the tourism industry to ensure a better future.
... Almost half of Wistow and Schneider's (2003) participants reported not having a close friend at work. Very few socialized with co-workers outside work (Jahoda et al., 2009;Lysaght et al., 2017), there were clear individual examples of social exclusion at work (Humber, 2014;Lysaght et al., 2017), and a clear-cut instance of workplace bullying (Hall, 2005). Problems exist with workplace inclusion for some, but little is known about risk factors, effective responses, or comparisons with nondisabled workers. ...
Social inclusion and exclusion are important to people with intellectual and developmental disabilities. We examine contemporary understanding of social inclusion, including sense of belonging, drawing particularly on research reporting adults’ own views and experiences. We draw on Simplican et al.’s (2015) ecological model of social inclusion to structure our analysis of social inclusion to focus on participation and relationships. Across the adult lifespan, we review mainstream community participation
in various settings, including encounters. We examine relationships with different types of partners and in specific social contexts including LGBTQ+ relationships and online relationships. Our adult life course theme covers companions for community activities at different ages, age-related mobility limitations and their effects on inclusive community participation, retirement, and end of life. We identify ways to support social inclusion. The focus throughout is positive, but we also consider challenges such as loneliness and feeling safe. We end with suggestions for future research.
... Zimbardo (2008) describes how the process of using words can 'dehumanise' people through language, and that this is the starting point for social exclusion and potentially a stepping stone towards more serious actions. People with intellectual disabilities have long faced both overt and subtle discrimination and social exclusion (Hall, 2005). For example, the eugenics movement initially argued that people with intellectual disabilities were 'moronic' or 'feebleminded' and therefore inferior and undeserving of life (Dune, 2012). ...
Language framed as derogatory names and symbols can have implications for people and their life experiences. Within a Saussurian-inspired frame, and looking at ideas of stigma and social inclusion, this paper examines the use of language as a weapon within a social context of (changing) intent and meaning. Three examples of language use in mainstream society are analysed: ‘retarded’ which evolved from scientific diagnosis to insult; ‘gay’ as a derogatory adjective within popular culture; and, the way language around suicide is used to both trivialise and stigmatise those who are suicidal, as well as those who are bereaved.
... (Flynn 2010). An earlier study found that even when advocacy groups for persons with ID are in place, the decisions made and their consequences should not be in isolation and all people with ID should be represented (Hall 2005). ...
Social inclusion is central to positive life experiences for those with and without intellectual disabilities (ID). Unfortunately, those with ID experience high levels of social isolation. As group homes, one of the most common forms of community living, aim to provide an equitable quality of life for adults with disabilities, significant responsibility of promoting social inclusion falls to them. The intention of this review is to identify the facilitators and barriers associated with social inclusion for people with ID living in group homes to develop an evaluation framework. Five databases were searched, and inclusion/exclusion criteria were used to narrow the results to 21 articles. Four main categories of barriers and facilitators to inclusion became apparent in the literature: (1) Home characteristics and social inclusion, (2) Staff characteristics and social inclusion, (3) Organizational/Leadership characteristics and social inclusion, and (4) Resident characteristics and social inclusion. While the findings from these articles have been divided into four broad categories, it is acknowledged the identified barriers and facilitators are varied and highlight the important role of the group home and surrounding communities in promoting social inclusion of their residents. This review also highlights a gap in current literature surrounding social inclusion for those with ID. Overall, more emphasis on understanding the various pathways to achieving social inclusion from group home residents with ID could contribute to the creation of effective policy and practices.
... Safe neighborhoods, rich in opportunities to participate facilitated engagement, whereas impoverished areas, with limited leisure options, high unemployment, poor volunteering possibilities, few community facilities and/or crime impacting on personal safety (e.g., Hall, 2005), were presented as limiting participation. Small rural communities afforded some informal opportunities to connect, however, the range of social activities available to engage in may be narrow (e.g., Bates & Davies, 2004). ...
Adults with intellectual disability (ID) are now more likely to live in ordinary localities. However, this does not always equate with engagement, leading to forming new relationships and a sense of connection. This systematic scoping review examined research on social inclusion in neighborhoods for adults with ID, synthesizing 94 peer-reviewed studies published between 2000 and 2020. The characteristics of neighborhoods that foster inclusion include: richness of opportunities in localities, public acceptance, positive neighboring, and multi-dimensional accessibility. Social inclusion in neighborhoods is complex, with a range of other influencing factors also identified. Recommendations for further research and implications for practice are discussed, to support individuals to actively engage locally and to enhance their informal social networks.
... Safe neighborhoods, rich in opportunities to participate facilitated engagement, whereas impoverished areas, with limited leisure options, high unemployment, poor volunteering possibilities, few community facilities and/or crime impacting on personal safety (e.g., Hall, 2005), were presented as limiting participation. Small rural communities afforded some informal opportunities to connect, however, the range of social activities available to engage in may be narrow (e.g., Bates & Davies, 2004). ...
Deinstitutionalisation has increased the likelihood of adults with intellectual disabilities residing in neighbourhoods either in staff supported accommodation or in their family home. However, it raises the question of whether national policies on disability have translated into practice actions by service providers that result in positive social inclusion outcomes for individuals. This study examined the practice initiatives supporting social inclusion in neighbourhoods in specialist state-funded service providers for adults with intellectual disabilities. Using a mixed methods design, CEOs/service leaders of 40 organisations completed an online survey. Follow-up interviews were completed with a randomised sample. Shifting towards new service models and strategic links with mainstream organisations were most often mentioned as furthering social inclusion goals. A wide range of service initiatives were reported, with positive outcomes alongside a range of challenges. Service providers play an important role in providing individualised supports that foster local engagement. However, the service context is complex and service leaders have reported many challenges that may impede progress on social inclusion.
... This is specifically highlighted by our participants in relation to young people with physical disabilities, for whom autonomy in everyday life is extremely rare. Moreover, acknowledgement, encouragement, and support provided by the staff members create "safe" and "invisible" spaces, highlighted as important for nurturing the sense of "normality" away from external labels and stigma marginalized young people experience on daily basis (Hall, 2005(Hall, , 2013Herbert, 2009). This supports the development of new, positive identities and growth in one's perceptions of their own competence and confidence (Cooper, 1993), manifested in active engagement as suggested by our results and by SDT (Deci & Ryan, 2000). ...
Adopting a mixed-methods research design, this study explored the psychological experiences of marginalized young people participating in inclusive music projects, with attention to inter- and intra-personal outcomes and underlying mechanisms. We worked with four different music projects, aimed at young people from lower socio-economic backgrounds or those with special educational needs and/or disabilities. With a total sample of 134 young people, parents, and creative practitioners, we used quantitative analyses of retrospective surveys to assess staff members’ perceptions of changes evident in individual young people (n1(total) = 99, n1(female) = 39, n1(male) = 59, n1(non-binary) = 1, mean age = 15.59). We performed thematic analysis on eleven semi-structured focus group discussions conducted with the young people (n2 = 26), their parents (n3 = 14), and staff members (n3 = 21), and 82 session reports completed by the staff members after each session. Growth over time in both intra-personal and inter-personal dimensions of functioning was observed, with qualitative data illuminating possible environmental and psychological mechanisms via two overarching themes of “ Self-Development” and “ Social Acknowledgement”. These results are collated in the model of youth empowerment, and its relevance to marginalized groups of young people is highlighted through promotion of active agency and empowerment. The model is interpreted in the light of several psychological theories of well-being, particularly self-determination theory and access-awareness-agency model, and implications for future work are discussed.
... Many scholars deem this operationalisation self-referential and inadequate when it is primarily based on prevailing ableist values like independence and self-determination, and therefore insufficiently attunes to what is at stake in the lifeworld of people with significant intellectual, cognitive and psycho-social disabilities (Bach 2017;Stainton 2005). They advocate a more comprehensive and relational approach of inclusion and participation, thereby challenging the ability/disability binary (De Schauwer et al. 2021) and recognizing the broad range of human diversity, expressed in (contested) social identities (Rapley 2004), (power) inequalities (Bos and Kal 2016;Meininger 2013), and both individual and communal preferences, desires, needs, capacities and complexities (Clifford Simplican , 2019aCobigo et al. 2012;Hall 2005Hall , 2010Meininger 2008;Renwick et al. 2019). ...
Social inclusion policies often assume that community integration is beneficial for all people with disabilities. Little is known about what actually happens in encounters between people with and without severe intellectual disabilities in the public space. Based on social-constructionist and responsive-phenomenological insights, we performed participant observation, semi-structured interviews and researcher reflexivity to study encounters between Harry (pseudonym), a man with a severe intellectual disability, his neighbours, fellow service-users, support professionals, and the first author. A thinking-with-theory strategy was adopted to interpret and deepen observations and reflections. We argue for more ‘experimental-relational spaces of encounter’ between people with and without severe intellectual disabilities, wherein the latter put down their verbal and cognitive weaponry. This proved to be more appropriate for spending ‘quality time’ with Harry then typical satisfactory neighbourhood interactions – often embedded in verbality, habits, routines and rationalizations that do not reflect the existence of people with severe intellectual disabilities.
• Points of interest
• An increasing number of people with severe intellectual disabilities live in homes in a neighbourhood setting.
• However, in everyday neighbourhood life people with and without severe intellectual disabilities hardly ever encounter each other in a way both of them like.
• The research shows that this lack of pleasant encounters can be related to powerful rules about how we should interact in the public space in the 21st century.
• In the neighbourhoods we studied, people without intellectual disabilities are in control of these rules. They prefer verbal and cognitive interactions in the public space. Non-verbal and less cognitive approaches are often seen as inappropriate.
• The research recommends that people without intellectual disabilities should open up for more fitting ways to communicate with people who cannot speak (for themselves).
... For adults with intellectual disabilities and their families, the importance of social networks for positive health, well-being, social inclusion and tackling disadvantage across the life-course cannot be understated (Bele & Kvalsund, 2016). Despite this, non-disabled people rarely consider the importance of social networks for adults with intellectual disabilities (Dunbar, 2015;Emerson & McVilly, 2004;Hall, 2005). ...
Background
Despite the importance of social networks for health and well‐being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks.
Method
A systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed.
Results
Quantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation.
Conclusions
Stigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.
... Social inclusion has often been viewed in relation to employment and independent living (Hall, 2005). While achieving these goals might lead to greater physical presence in the community, definitions of social inclusion should account for relationships, membership and belonging (Hall, 2017, p. 861). ...
Background
Social inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities.
Method
A systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed.
Results
Seventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed.
Conclusions
More nuanced conceptualisations of belonging and reciprocity may be helpful in future research, to better capture the context and meaning of individual lives and relationships.
... A person might also build a positive identity, develop a sense of self and strengthen self-determination, sense of empowerment, and resilience (Clarke et al., 2015). Data from interviews with self-advocates with ID suggest that the abovementioned benefits might be gained from such activity (Anderson & Bigby, 2017;Caldwell, 2011;Gilmartin & Slevin, 2010;Hall, 2005;McNally, 2003; for the recent systematic reviews see also : Fenn & Scior, 2019;Tilley et al., 2020). Given the relative independence of the Anderson & Bigby's model from cultural contexts and the fact that the theory is grounded in the real experiences of people with ID from various self-advocacy groups, this model might serve as an important reference point when discussing experiences of self-advocates worldwide. ...
The paper presents the opinions of self-advocates with mild intellectual disability about their work as social educators – public self-advocates raising disability awareness. Six semi-structured individual interviews were conducted. Data was analyzed within the framework of Interpretative Phenomenological Analysis. The themes which emerged from the interviews comprise: the motives of educators to work as self-advocates, opportunities to gain new skills and to raise public awareness about disability given by this activity, the difficulties they experience being social educators and ways to overcome them, the meaning of self-advocacy in their lives as well as the readiness to recommend this work to other people with disability. The gathered data suggests that, according to the self-advocates, being a social educator enhances the social status of self-advocates. It also provides an opportunity to develop skills, new social roles and sometimes positive identities, which is in line with the assumptions of the theoretical models of self-advocacy.
... Community is a contested and dynamic concept, and while our intention here is not to define it, we want to examine how everyday experiences of a community might intersect with wellbeing and violence in the context of learning disability. Community has played a significant role in the history of learning disability in the United Kingdom, with most people with learning disabilities occupying marginal positions in society (Hall, 2005(Hall, , 2010. "Community" is often understood to be a social good, to promote belonging and processes of interpersonal social relations that benefit individuals' sense of wellbeing and safety. ...
For people with learning disabilities, targeted violence has become routinized. In this article, we seek to explore the impact pervasive victimization has on their experience of community and participation and, through this, their health and wellbeing. People with learning disabilities experience significant inequality in health and wellbeing compared to their non-disabled peers, and the role of violence and victimization remains mostly neglected. By drawing on in-depth qualitative interviews with people with learning disabilities, we argue that abuse, disrespect and devaluing profoundly erode wellbeing. The complex forms of violence experienced by people with learning disabilities are critical to understanding the significant inequalities in health and wellbeing experienced by people with learning disabilities. We focus on community and misrecognition to move the focus from one that examines causation towards one that uncovers the layers of invisibility, and the complex relations that structure experiences from the perspective of people with learning disabilities themselves. By doing this, we locate violence and victimization as health and wellbeing concerns and seek to add a more comprehensive and holistic understanding of the social determinants of health. For the inequalities that structure the lives of people with learning disabilities to be holistically understood, they must be reframed as an issue of social justice, and violence must be identified as a central contributor to these inequalities.
... However, our general findingsin particular, that a new way of dealing with difference may arise through organised contactconcur with those of previous research (Hall, 2004(Hall, , 2005(Hall, , 2010Wiesel & Bigby, 2016;Bigby & Wiesel, 2019). This makes us fairly optimistic about the validity of our main findings. ...
Background
In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account.
Method
This study involved in-depth interviews with 25 individuals with intellectual disabilities, 24 people without disabilities, and 15 professionals; and observations in neighbourhood projects.
Results
Facilitating convivial encounters is a promising way of engaging with difference and an interesting alternative to “othering,” “similarising,” or “romanticising difference.”
Conclusions
Convivial encounters do not promote sameness or difference; instead, they allow groups to jointly develop transient shared identifications. In community projects, sameness and difference can be reinvented so that people can engage with difference in an enriching way. Therefore, convivial encounters, especially when organised, can be seen as a new framing of the ideal of social inclusion.
... This notion of work as contributing to a sense of self is arguably a valid one through which governments attempt to find ways to include marginalised people in society and to improve their lives. Evidence suggests that some people with intellectual disabilities would like to work and view this as a means by which they are able to express themselves and feel ownership over their lives (Hall, 2005). ...
Background: Dedifferentiation refers to the trend of positioning people with intellectual disabilities together with other disabled individuals for political purposes, to act as a counter to differentiated approaches. This article explores the influence of dedifferentiation in professional support settings through the lived experiences of people with intellectual disabilities and their staff.
Methods: Ethnographic research, including participant observation and interviews, conducted with an intellectual disability social care provider and an independent community café, both based in an area of England.
Results: Tensions exist between dedifferentiation aims and the lived experiences of people with intellectual disabilities, who often struggled to achieve in areas including independent community inclusion and paid employment.
Conclusion: Dedifferentiation has disadvantages for people with intellectual disabilities. It can underestimate and mask needs that people experience in relation to their disabilities. Policy and professional support might be improved by (1) recognising these limits and (2) incorporating people’s real-world needs into support provision.
... The relations of entanglements of carceral/post-carceral identities is further extended by Gormley who gave us the opportunity to enter the world of a group of prisoners rarely featuring in prison research, and particularly new to carceral geography: people with learning disabilities. Research on people with learning disabilities, one of the most marginalised populations in Western society (Hall 2005), remains neglected in wider geographical and criminological work (Claes et al. 2013)even when compared to work on physical disability or mental health issues. Making up about 20 per cent of the prisoner population this group is highly under-researched while often being further ostracised through what Gormley terms 'trans-carceration'. ...
... Dentro de la esfera del Estado, las investigaciones sobre exclusión y discapacidad se centran en analizar el marco jurídico desde el punto de vista de 6 En la bibliografía sobre discapacidad es posible encontrar diferentes aproximaciones al estudio de las esferas sociales y los contextos específicos; por ejemplo, diferente acceso a servicios de salud en función del área de residencia rural-urbano (Hall, 2005;Nicholson y Cooper, 2013), casta y discapacidad (Pal, 2010), calidad de migrante y discapacidad (Skrinda, 2008), y género y discapacidad (Daruwalla et al., 2013). 7 Son innegables las ventajas a las que tendrán acceso las personas con discapacidad al contar con un empleo, como el acceso a créditos de vivienda, y la mejora de la autoestima y la valoración social (Véliz y Espinoza, 2010). ...
Este artículo tiene como objetivo analizar dificultades que enfrentan usuarias de Centros de Justicia para las Mujeres (CJM) en México para generar un ingreso y ganar autonomía económica. En especial interesa identificar y analizar aquéllas dificultades relacionadas con el cuidado de descendencia, enmarcando la discusión en la importancia crítica que tiene que la corresponsabilidad social del cuidado de hijos e hijas esté presente en casos de mujeres sobrevivientes de violencia.
... With these components in mind, there is a well-established literature in health geography on the precarious well-being of populations deemed disabled (e.g. Hall, 2000Hall, , 2005Hall and Kearns, 2001;DeVerteuil et al., 2007;Power, 2008;Hall and Wilton, 2017). It is also well-established that many disabled populations are disproportionately reliant on a variety of state-provided benefits, given their sustained exclusion from the labor market (Dear and Wolch, 1987;Wilton, 2003;Mifflin and Wilton, 2005;Power and Bartlett, 2018). ...
This paper presents the lived experiences of individuals with mental illness as they navigate the benefits landscape in an age of welfare reform in the UK. We focus on the impacts upon their well-being and daily geographies. We articulate the relationship between welfare reform and mental health using the concept of poverty management and its ‘missing geographies’, in which everyday well-being and routines are dismissed by the restructuring welfare system. We liken this dismissal to a shift towards a narrower and more unforgiving mode of poverty management, where even the smallest misstep can unravel the entire edifice of everyday survival and well-being.
In research about landscapes and the environment, scientific ontologies and epistemologies prevail, thus largely excluding contributions from marginalized groups, or creative expressions of what spaces mean to people. This article draws on qualitative place-based arts workshops, which used multimodal and multisensory methods with deaf children and disabled adults. The resulting co-created texts and artworks represent meaningful responses to specific local landscapes and their natural inhabitants. Considering literacies, power, and who can or cannot be an author, this article argues that such processes of creative co-production could be viewed as means of overcoming marginalization and enabling disabled people to engage with local landscapes. Inclusive literacy practices are presented as ways in to “authoring” marginalized groups’ responses to natural environments, with potentially transformative outcomes for the participants, decision-making processes, and the land itself.
Learning Disability and Everyday Life brings into conversation ideas from social theory with “thick” descriptions of the everyday life of a middle-aged man with learning disabilities and autism.
This book is markedly ethnographic in its orientation to the gritty graininess of everyday life—eating, drinking, walking, cooking, talking, and so on—in, with, and alongside learning disability. However, preoccupation with, the “small” coexists with a gaze intent upon capturing a bigger picture, to the extent that the things constituting everyday life are deployed as prisms through and with which to critically reflect upon the wider worlds of dis/ability and everyday life. Such attention to the small and the big—the micro and the macro—allows this book to explore the ordinary and everyday ways meanings about normalcy and abnormalcy, ability and disability, are put together, enacted, practised, made (up)—in the sense of constituting and fabricating—and, crucially, accomplished through and between people in specific, and invariably contingent, sociocultural, discursive, and material conditions of possibility.
This book will be of specific interest not only to students and scholars of disability but also to persons with lived experiences of disability. This book will also be of interest to students and scholars of anthropology and sociology.
Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise.
The public space to which - in line with common definitions of inclusion - persons with intellectual disability are designated often turns out to be a space of discrimination. The aim of this study is to identify spaces of encounter. Michel Foucault’s concept of heterotopia - ‘other spaces’ – and its subsequent interpretations are used as an analytical tool for evaluating efforts to include persons with intellectual disability in society. In Foucault’s work ‘space’ refers to geographical places and to ‘sites’ that can be defined by sets of relations. Among these spaces are ‘counter-sites’ like large scale residential facilities for people with intellectual disability. Though policies of deinstitutionalisation aim at erasure of these places of exclusion, the results are often disappointing, largely because these policies ignore the analysis of power dynamics that install exclusionary processes and structures. Recent interpretations of the concept of heterotopia position the ‘other places’ in the middle of ordinary life as social spaces of encounter and dialogue between the ‘normal’ and the ‘abnormal’. Characteristics and practical conditions of such spaces of encounter are explored. These interpretations open up a new conceptualisation of inclusion in terms of niches in which encounter and dialogue are cultivated and an alternative social ordering can be exercised.
With the future of New South Wales (NSW) regional train services under question, concern has been expressed that replacement of trains with coaches will diminish levels of mobility and raise social exclusion for some people. Provision has been made on coaches for people considered to be disabled, but without recognition of the needs of people who do not fit either able or disabled categorisation. All train services offer better accessibility and therefore mobility to all people. The issue of regional train service cessation and replacement raises questions regarding the reliability of existing Australian studies about train service replacement, the degree to which health and illness are affected, as well as the potential for the exacerbation of existing social exclusion. An examination of the literature and some historical investigation undertaken by the authors highlights these limitations amid the ableism/disablism dualism in existing research and rural transport policy. The paper further suggests that the absence of Australian evidence of mobility loss should not be taken to indicate the reality of regional mobility and social inclusion. Instead the paper argues that further independent mobility loss and social exclusion may occur if coaches are further substituted for regional train services.
Many initiatives including theatre projects with disabled and non-disabled actorsaim at increasing the inclusion of people with intellectual disabilities. We tooktheatre as the context to learn about these inclusive practices. We searched thescientific literature for case studies to investigate: 1) What can inclusive theatreperformances look like?, 2) Which factors stimulate or hinder working inclusivelywithin a theatre?, and 3) How are inclusive theatre performances looked upon?Overall, inclusive theatre can take various forms, however realising inclusivecollaboration between actors with and without disability is not easy. Based onthe findings, it appears that participants of inclusive theatre without disabilitiesneed to be open to the different modes of expression of their colleagues withdisabilities, and to value this expression and provide room for it. All participantswith and without disabilities together need to develop new ways of working andco-creating, resulting in new skills and views. Inclusive theatre productions canmake people think differently about ability and normality, while at the same timehaving aesthetic power, but it is still controversial to consider these productionsas art instead of as social projects. It is important to realise that inclusive theatreimplies changes for every participant, just as an inclusive society would.
In this paper I develop an urban social geography of neurodiversity that attends to the plurality of neurodiversity and of neurodiverse experiences of the city. Geographers have remained relatively silent on issues of neurodiversity in the city and, as such, the perspectives and experiences of neurodiverse individuals remain vastly unreported. The city is a crucial spatial context of everyday life for those who are neurodiverse as it can present challenges due to its complex, unpredictable, and fluid nature. Drawing on recent calls for the development of a relational geography of disability, this paper explores the intricate geographies of neurodiversity in the city, revealing ways urban spaces become spaces of belonging or exclusion for those who are neurodiverse. Urban spaces are experienced in diverse and complex ways, linked to a multitude of neurological differences and their intersections. The paper reveals social, spatial and temporal practices and processes through which urban spaces acquire meaning for those who are neurodiverse. The research offers important insights for urban planning and policy, particularly in terms of thinking complexly about neurodiversity and associated questions of inclusion and exclusion in the city. The paper concludes with a discussion of some future research directions for an urban geography of neurodiversity.
This chapter focuses upon the spatial and temporal characteristics of hate experiences as they are described and reflected upon by participants, with a particular focus upon how these incidents affect their sense of being within different spaces. In doing so, I ask questions about the ways that hate can become an ordinary and anticipated experience within particular times and spaces. Such an approach explores how relations with other bodies, objects, and our surroundings can be felt. Following (Gorton in Feminist Theory, 8:1464–7001, 2007), it asks: ‘how do spatial relationships affect the way we feel?’ In order to take into account the spatial and temporal dimensions of hate.
There is a gap between the desired outcomes of social inclusion policy and the everyday experiences of people labelled with intellectual and developmental disabilities. Despite belonging rhetorically named in social inclusion policy and practice, belonging is often absent in the lives of people labelled with intellectual and developmental disabilities and remains undertheorised in its relationship to social inclusion. In this paper, we explore the role belonging might play in narrowing the gap between how social inclusion is theorised and how it is experienced. Drawing on critical disability and feminist relational theories, we outline a relational conceptualisation of belonging and use it to ‘crip’ the construct of social inclusion. Exploring the synergies and tensions that surface when social inclusion and belonging are held together as discrete but interconnected constructs, we name four conceptual shifts and expansions that allow us to see social inclusion differently. Through the centring of the experiences of people labelled with intellectual and developmental disabilities, we explore the ways belonging can help to reimagine inclusion from assimilationist, static, objective and formal towards inclusion as fluid, negotiated, (inter)subjective, (in)formal and intimate.
This study contributes to the under-researched area of culture in institutional care for people with intellectual disabilities in an East Asian context. Drawing upon in-depth interviews with 20 women frontline care workers for institutionalized people with intellectual disabilities in Taiwan, we examined culture-specific caring relations such as the fictive kinships of Confucian care ethics (i.e., respect for elders and affection for the young), the charity paradigm, and religious compassion, which can induce attentive and respectful care in institutional spaces but also relegate residents to stigmatized subordination in a hierarchy of caring relations and legitimatize the voluntary exploitation of women workers. In situating the relational nature of care and the dis-enabling potentials of culture at the disability-care-place intersection, we promote an ethics of engagement that values and dignifies both recipients and providers of care.
This qualitative study investigates the experiences of individuals with learning difficulties who participate in Makaton choirs. Semi-structured interviews were conducted with five choir members and a leader. Thematic analysis revealed that participants reported increased opportunities for social connection with others. Participants also reported that performing sign language to song supported the acquisition of Makaton, leading to improvements in communication. Through providing a space for the development of communication and increased social interaction, Makaton choirs present opportunities for creating social relationships and for accessing and participating in new social contexts. In addition, an improved ability to use and understand Makaton sign language allows participants to access the lyrical content of songs, leading to an enhanced understanding of the experience of emotion through music. It is argued that participation in such a group may promote health and well-being by providing participants with a number of psychological and social benefits. Directions for future research are also presented.
Journal IJSSHR 2022
Wat komt er in de praktijk terecht van de participatiesamenleving?
Wie doet er boodschappen voor de zieke buurman met een verstandelijke beperking? Wie helpt een buurtgenoot die herstelt van een depressie om de post op orde te houden?
En zitten mensen met een verstandelijke beperking of psychiatrische achtergrond hier eigenlijk wel op te wachten? Willen buurtbewoners wel gezellig samen eten in het wijkrestaurant om de sociale betrokkenheid op elkaar te versterken?
In de zogenaamde ‘participatiesamenleving’ moeten mensen meer zorg voor elkaar dragen en juist zorg aan kwetsbare mensen zoals mensen met een verstandelijke beperking of psychiatrische achtergrond staat hoog in het vaandel.
Uit het onderzoek van Femmianne Bredewold blijkt dat de meeste mensen helemaal geen contact hebben met iemand die een verstandelijke of psychiatrische beperking heeft. En als er contact is, ontstaan er gemakkelijk problemen. Met name waar grenzen ontbreken, vervagen en overschreden worden, ontstaan gemakkelijk vervelende situaties die ontaarden in conflicten en pesterijen.
Positief contact blijkt oppervlakkig contact te zijn. Mensen groeten elkaar en maken een praatje op straat, het hondenveldje of in de winkel. Dit wijkt af van de verwachtingen die opduiken in beleidsverhalen rond de Wet Maatschappelijke Ondersteuning (Wmo), maar hoe erg is dat eigenlijk?
Dit boek zet het ideaal van de participatiesamenleving met beide benen op de grond en geeft handvatten om de vermaatschappelijking van de zorg en de verwachtingen opkomend na de invoering van de Wmo in goede banen te leiden.
This chapter outlines some of the key issues and research evidence regarding residential living options for older individuals who have intellectual or developmental disabilities (IDD). The United Nation’s Convention on the Rights of Persons with Disabilities defends the right of individuals with disabilities to choose where and with whom they live, on an equal basis with others. For many, especially those with intellectual and developmental disabilities (IDD) who are ageing, challenges abound in exercising this right. The growing life expectancy experienced by this population has not been supported by clear policies on residential supports for ageing individuals. Internationally, no clear consensus has emerged on whether age-related needs of older individuals with IDD should be addressed by the disability sector, the ageing sector, or both. A lack of clarity is also evident in whether ageing in place, endorsed in many international charters for the general population, is an appropriate and feasible policy for those who have IDD. The ageing in place concept is complicated for older individuals with IDD as notions of ‘home’ have different application within the disability field, for example, living with ageing parents within the family home or living in multiple housing options provided by state or third sector organisations. Some providers support a policy of ‘in place progression’ where individuals with significant age-related needs, typically late-stage dementia, are moved to specialised environments supported by trained staff. More controversial is the policy of ‘referral out’ where individuals are moved to mainstream aged care, also termed senior/older persons or nursing home care. The atypical profile of older persons with IDD presenting at these facilities, combined with evidence of lower quality outcomes and lower cost suggests that ageing in place should be the preferred option.
Many initiatives including theatre projects with disabled and non-disabled actors
aim at increasing the inclusion of people with intellectual disabilities. We took
theatre as the context to learn about these inclusive practices. We searched the
scientific literature for case studies to investigate: 1) What can inclusive theatre
performances look like?, 2) Which factors stimulate or hinder working inclusively
within a theatre?, and 3) How are inclusive theatre performances looked upon?
Overall, inclusive theatre can take various forms, however realising inclusive
collaboration between actors with and without disability is not easy. Based on
the findings, it appears that participants of inclusive theatre without disabilities
need to be open to the different modes of expression of their colleagues with
disabilities, and to value this expression and provide room for it. All participants
with and without disabilities together need to develop new ways of working and
co-creating, resulting in new skills and views. Inclusive theatre productions can
make people think differently about ability and normality, while at the same time
having aesthetic power, but it is still controversial to consider these productions
as art instead of as social projects. It is important to realise that inclusive theatre
implies changes for every participant, just as an inclusive society would.
This article examines findings from a qualitative study exploring the experiences of young adults with disabilities regarding their perceptions of interpersonal discrimination on public transport in two Australian states. Interpersonal discrimination by members of the public included contests for accessible seating, receiving unwanted physical assistance, bullying and intimidation. Participants reported that transport staff engaged in verbal abuse and hostile interactions including questioning the young person’s disability. These experiences appeared to be influenced by narrow perceptions of disability, visibility or otherwise of the young person’s impairment, limited understanding of the needs of young people with disabilities, and the age and gender of the person behaving in a discriminatory way. The discriminatory experiences were reported to have had a negative impact on the social and economic participation of these young adults in their communities.
•
The participants of the study disclosed diverse experiences of interpersonal discrimination by the travelling public and transport officials.
•
Interpersonal discrimination impacted on some of the young adults’ capacity to move about freely, as they sought to avoid exposure to prejudicial attitudes and verbal abuse.
•
Heightened concerns about getting to and from activities safely affected the young adults’ willingness to use public transport for their daily activities.
•
Eliminating day-to-day interpersonal discrimination that young adults with disabilities experience on public transport requires legislative, policy and societal change.
Background: A high sense of subjective well-being has been associated with more
prosocial behaviours, better health, work productivity and positive relationships. The
aim of this systematic review was to explore what impact self-advocacy has on the
subjective well-being of people with intellectual disabilities.
Method: The authors reviewed articles focusing on the perspectives of adults with
intellectual disabilities engaged with self-advocacy groups. Searches were performed
in PsychINFO, Web of Science, SCOPUS, MEDLINE and CIHNL databases, resulting
in 16 articles meeting the inclusion criteria. A framework synthesis approach was
used to extract data deductively based on the Dynamic Model of Wellbeing.
Results: While self-advocacy has a positive impact on all domains of the Dynamic
Model of Wellbeing, negative impacts associated with participation in a self-advocacy
group were also reported.
Conclusions: The benefits of participating in self-advocacy groups on the well-being
of individuals with intellectual disabilities outweigh the disadvantages.
H. Barnes, P. Thornton and S. Maynard-Campbell, Disabled People and Employment: A Review of Research and Development Work, York: The Joseph Rowntree Foundation, 1998, £11.95.
A. Roulstone, Enabling Technology: Disabled People, Work and New Technology, Milton Keynes: Open University Press, 1998, £45.00, paper £14.99, 160 pp.
K. Simons, Home, Work and Inclusion: The Social Policy Implications of Supported Living and Employment Opportunities for People with Learning Disabilities, York: The Joseph Rowntree Foundation, 1998, £11.95.
Our understanding of ‘disability’ is inextricably linked to paid work. Since at least the industrial revolution to be defined as ‘disabled’ means to be either unemployed or underemployed. Only in times of war, when the ‘non-disabled’ workforce are deployed elsewhere, does this unfortunate state of affairs change significantly (Humphries and Gordon 1992; Oliver 1990, 1996). As a growing number of mainly disabled writers (UPIAS 1976; Oliver 1990, 1996; Barnes 1991, 1992; Hyde 1996; Oliver and Barnes 1998) have noted, without radical restructuring of social policy in general, and of the way work is organised in particular, there is little cause for optimism for the future.
The article starts with an examination of some key paradigms of later life and then employs their insights to expose the powerful and deceptive discourse of 'independent living', which has recently been one of social policy's most persuasive mantras. The theoretical perspective that informs the whole article is that of postmodernism with a critical gerontology perspective. The critique of independent living that the article offers is then applied within the overlapping area of housing and community care to a special case, that of physically impaired older people, in three separate but related instances: academic, policy and political. Taking a critique of independent living beyond theory into policy development may achieve a closer fit between what older people want their living environments to be and what they are currently presented with. Finally, rather more arguably, it may also result in a more cost-effective use of resources.
This article addresses the challenge of using narrative methods with people who have learning difficulties. Such informants present four particular interview problems: inarticulateness; unresponsiveness; a concrete frame of reference; and difficulties with the concept of time. The authors focus on the first two of these problems and argue that neither of them constitutes an insuperable barrier to people telling their story. Drawing on detailed interview material from an informant with learning difficulties, the authors set out to show in practical terms how these problems might be tackled, emphasising in particular the importance of being attentive to what goes unsaid. They conclude that researchers should put more emphasis on overcoming the barriers that impede the involvement of inarticulate subjects in narrative research instead of dwelling on their limitations as informants.
The aim of the research described here was to examine the issue of social inclusion in relation to young people with a learning difficulty in Guangzhou. Ten families were included in this study based on their willingness to participate. The young people had to be over the age of 16 and not attending school. In each family the young person and a family carer (usually one of the parents) was interviewed separately. The article focuses mainly on the experience and words of the young people who express their feelings towards work and other social contacts. The conclusion is that despite greater government awareness of the needs of people with a disability, and the formulation of social and economic policies designed to encourage inclusion this is far from happening at grassroots level.
This article argues that the concept of social exclusion, which was orig inally developed to describe the manifold consequences of poverty and inequality, has become embedded as a crucial element within a new hegemonic discourse. Within this discourse, terms such as social co hesion and solidarity abound, and social exclusion is contrasted not with inclusion but with integration, construed as integration into the labour market. The paper analyses the operation of this discourse in recent pol icy documents from the European Union and the Borrie Report, as well as in the work of Will Hutton. The discourse is described as fundamen tally Durkheimian because it treats social divisions which are endemic to capitalism as resulting from an abnormal breakdown in the social co hesion which should be maintained by the division of labour. The article argues that, within this discourse, the concept of social exclusion oper ates both to devalue unpaid work and to obscure the inequalities between paid workers, as well as to obscure the fundamental social division be tween the property-owning class and the rest of society.
In a central New Zealand region, 14 people with learning difficulties who were identified by disability agencies as successfully employed were interviewed. Semistructured interviews with the paid workers covered topics such as getting and learning their work, pay, choices about social opportunities and career paths. Interviews were transcribed and constant discussion, and challenging of qualitative data identified the following themes: the effect of paid work on lifestyles, how other people were important for support and workers' aspirations for the future. The effect of paid work has meant major changes for a few people by becoming independent of the benefit system and buying their own home. For other workers, it meant having to learn to use the public transport system and choosing their own social activities. Workers' perspectives were used to provide better understanding of the supports needed by adults with learning difficulties to enhance their employment rates and careers in the paid workforce.
Does the social model of disability currently inform the delivery of services for people labelled as having profound and complex learning difficulties? What distinguishes practice which draws on the social model from that which is influenced by an individual model or a medical model of disability? This paper draws on the findings of a small scale interpretive research study and some of the current debates within disability studies to illuminate these questions. It concludes that the social model can and does positively impact on some practice and that it should be taught to all providers of services for this group. It further concludes that to include discussion about individual experience of impairment in such training may have negative consequences.
H. Barnes, P. Thornton and S. Maynard-Campbell, Disabled
People
and
Employment:
A
Review
of
Research
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Development
Work, York: The Joseph Rowntree Foundation, 1998, £11.95.
The social geographies of people with learning disabilities, one of the most marginalized groups in society, have largely been ignored. The paper explores these hidden geographies through the interpretation of narratives of people with learning disabilities in Scotland, within a social policy framework of social exclusion and inclusion. The paper interprets the experiences of being excluded from and included within mainstream socio-spaces, and the safe spaces that many people with learning disabilities have formed for themselves in between the positions of social exclusion and inclusion.
Thesis (Ph. D.)--University of Maryland, College Park, 1998. Thesis research directed by Dept. of Geography. Includes bibliographical references (leaves 146-159).
The policy and theoretical discourses of deinstitutionalisation have been centred on a fundamental normative polarity that opposes the 'dehumanising' institution to the more humane environment of community care. We reconsider this moral polarity by drawing upon three philosophical currents that emphasise the need for inclusive and compassionate governance. We argue that there are strong political - ethical and practical reasons why inclusive governance can improve human-services planning and delivery. First, by recognising and addressing the vulnerabilities of nonservice users, an inclusive ethics is most likely to maximise the welfare of all groups with interests in community care. Following from this, an inclusive ethics is more likely to foster the broad social support that we argue is necessary for successful community care. Third, an inclusionary outlook has the potential to broaden the design of community-care services and facilities. An inclusive ethics would radically open up policy design to a range of other service options that account for the complexities of place, policy context, and the needs of key interest groups, such as service users, workers, relatives/advocates, and local communities.
Social roles dominate people's lives, and people largely perceive themselves and each other in terms of their roles. The value people attribute to various social roles tends to decisively shape their behavior toward persons whom they see in valued or devalued roles. Those in valued roles tend to be treated well and those in devalued roles, ill. The most current and recently revised version of the Social Role Valorization (SRV) schema is presented in condensed form, showing how social role theory can be recruited for designing very powerful practical measures to pursue valued roles for mentally retarded and other persons or classes at risk of social or even societal devaluation, to upgrade the perceived value of the roles such persons already occupy, and/or to extricate such persons from devalued roles.
This paper critically evaluates, through use of covert ethnographic materials, an inner-city drop-in as a semi-institutional place where the identities of people with mental health problems are influenced by social processes of inclusion and exclusion. It is demonstrated, through an in-depth interpretative approach, that it is possible to understand more about the micro-geographies which make up deinstitutionalized landscapes, and about the social relations which characterise these. Key to this paper are findings which indicate that people with mental health problems cannot be understood as a straightforwardly homogeneous 'excluded' grouping, and that mainstream processes of boundary maintenance are in operation among these constructed 'others'.
Deinstitutionalization moved the focus of psychiatric care away from hospital institutions to community settings. Mental health services are no longer driven by a policy of illness containment, although detention and coercion retain legislative and cultural legitimacy, because the conceptual and practical focus of caring for people in the 1990s is built around journeys to(wards) ordinary 'independent' living. This paper draws upon the experiences of people with enduring mental health problems to explore the positions, roles and therapeutic benefits established by socio-spatial networking in the community. Social isolation and community integration are polar extremes, two very different 'locations' on a 'theoretical' rehabilitation pathway shaping mental health policy and community care practices. The paper assesses these two locations and searches for the middle-ground in practice. It draws on the concept of normality to compare service user and professional perspectives on the rehabilitation process. The paper argues, with optimism, that spaces of rehabilitation are being found 'in the community' but notes that until mental illness is de-stigmatised and society celebrates difference, creating space for 'Mad Pride', the post-asylum landscape must continue to evolve in search of models of good community care practice and potential landscapes of caring. The research presented in the paper was carried out with Rehabilitation and Community Care Services (RCCS) in Nottingham (1994-1997), and is based upon fieldwork observations and in-depth interviews with RCCS staff and 25 service users.
There is a growing body of work on geographies of deinstitutionalisation and its consequences, but the weight of this scholarship has focussed on people with mental health problems and physically disabled people. With only few exceptions, the 'post asylum geographies' of intellectually disabled people remain neglected by geographers. We advocate a redressing of this imbalance. First, we assess reasons for the relative absence of 'intellectual' considerations in geographies of disability. We then consider ways in which the full spectrum of those with mental differences might be included in geographical research. We conclude that Wolpert's call 25 years ago to 'open closed spaces' is just as applicable to our efforts to conceptually link health, place, and disability, as it is to the material welfare of vulnerable groups in society.
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. References Barnes, C., 1999. Disability and paid employment
- Ed
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. References Barnes, C., 1999. Disability and paid employment. Work, Employment and Society 13, 147–149.
Exclusionary social relations and practices. Social Geographies of Rural Mental Health, Findings Paper No 3
- H Parr
- C Philo
- N Burns
Parr, H., Philo, C., Burns, N., 2002. Exclusionary social relations and practices. Social Geographies of Rural Mental Health, Findings Paper No 3. Department of Geography and Topographic Science, University of Glasgow.
The Same as You? A Review of Services for People with Learning Disabilities. The Station-ery Office Entanglements of Power: Geographies of Domination and Resistance Geographies of Exclusion: Society and Difference in the West
- Edinburgh
- J Sharp
- P Routledge
- C Philo
- R Paddison
Scottish Executive, 2000. The Same as You? A Review of Services for People with Learning Disabilities. The Station-ery Office, Edinburgh. Sharp, J., Routledge, P., Philo, C., Paddison, R. (Eds.), 2001, Entanglements of Power: Geographies of Domination and Resistance. Routledge, London. Sibley, D., 1995. Geographies of Exclusion: Society and Difference in the West. Routledge, London. ARTICLE IN PRESS E. Hall / Health & Place 11 (2005) 107–115
New geographies of illness, impairment and disability
- Parr
Parr, H., Butler, R., 1999. New geographies of illness, impairment and disability. In: Butler, R., Parr, H. (Eds.), Mind and Body Spaces: Geographies of Illness, Impairment and Disability. Routledge, London, pp. 1–24.
Hard work in a hostile environment
- Guardian
Guardian, 2003. Hard work in a hostile environment. 30th April.
An Inclusive Future? Disability, Social Change and Opportunities for Greater Inclusion by 2010 The social model of disability: what does it mean for practice in services for people with learning difficulties? Disability and Society
- I Christie
- G Mensah-Corker
Christie, I., Mensah-Corker, G., 1999. An Inclusive Future? Disability, Social Change and Opportunities for Greater Inclusion by 2010. Demos, London. Coles, J., 2001. The social model of disability: what does it mean for practice in services for people with learning difficulties? Disability and Society 16 (4), 501–510.
Including people with learning difficulties: theory and practice Disability Studies: Past, Present and Future
- J Walmsley
Walmsley, J., 1997y. Including people with learning difficulties: theory and practice. In: Barton, L., Oliver, M. (Eds.), Disability Studies: Past, Present and Future. Disability Press, Leeds, pp. 62–77.
Landscapes of Despair: From Deinstitutionalisation to Homelessness. Polity, Cambridge. Department of Health Valuing People: A New Strategy for Learning Disability for the 21st Century Learning Disabilities: The Fundamental Facts
- M Dear
- J Wolch
Dear, M., Wolch, J., 1987. Landscapes of Despair: From Deinstitutionalisation to Homelessness. Polity, Cambridge. Department of Health, 2001. Valuing People: A New Strategy for Learning Disability for the 21st Century. HMSO, London. Enable, 2003. ACE: the Advisory Committee of Enable. Accessed 8th September. Foundation for People with Learning Disabilities, 2001. Learning Disabilities: The Fundamental Facts. Foundation for People with Learning Disabilities, London.
Sticking Up for Yourself: Self-advocacy and People with Learning Difficulties Community Care Pub-lication in association with Joseph Rowntree Foundation Tackling Social Exclusion: Taking Stock and Looking to the Future—Emerging Findings Social Geographies: Space and Society
- K Simons
Simons, K., 1992. Sticking Up for Yourself: Self-advocacy and People with Learning Difficulties. Community Care Pub-lication in association with Joseph Rowntree Foundation, London. Social Exclusion Unit, 2004. Tackling Social Exclusion: Taking Stock and Looking to the Future—Emerging Findings. Office of the Deputy Prime Minister, London. Valentine, G., 2001. Social Geographies: Space and Society. Prentice Hall, London.
Are people rude to you Leanne? Leanne: Mmm
- Beth
Beth [supporter]: Are people rude to you Leanne? Leanne: Mmm.
Starcross: Out of the Main-stream—Plotted Catchment Area of a Victorian Asylum in the Context of Changing Policy
- J Radford
- A Tipper
Radford, J., Tipper, A., 1988. Starcross: Out of the Main-stream—Plotted Catchment Area of a Victorian Asylum in the Context of Changing Policy. Rocher Institute, Toronto.
The best burgers? The person with learningdifficulties as worker The Disability Reader: Social Science Perspectives
- S Baron
- S Riddell
- H Wilkinson
Baron, S., Riddell, S., Wilkinson, H., 1998. The best burgers? The person with learningdifficulties as worker. In: Shake-speare, T. (Ed.), The Disability Reader: Social Science Perspectives. Cassell, London, pp. 94–109.
If you walk into White's Cafe´ '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
- Gordon
Gordon: If you walk into White's Cafe´ '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.
In: Social Exclusion in European Cities
- A Madanipour
- G Cars
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Madanipour, A., Cars, G., Allen, J., 1998. In: Social Exclusion in European Cities. Jessica Kingsley, London. Mencap, 1999. Living in Fear. Mencap, London.
Place, identity and disability
- Laws
The Same as You? A Review of Services for People with Learning Disabilities. The Stationery Office
- Scottish Executive
From social clubs to social movements
- Bersani
The structure and content of social inclusion
- Pearson
Building up safe havens…all around the world
- Pinfold
Sticking Up for Yourself: Self-advocacy and People with Learning Difficulties. Community Care Publication in association with Joseph Rowntree Foundation
- K Simons
Problems with ‘bridging the gap’
- Colley