‘Some people are not allowed to love’: intimate citizenship in the lives of people labelled with intellectual disabilities

Disability helps us think differently about the ‘ideal’ neoliberal-able citizen who may not equate to ideas of productive, sexual, ‘normal’. Intimate citizenship – our rights and access to intimacy – is often ignored by those working with people labelled with intellectual disabilities and in research. In this article, we discuss the outcome of a dialogue between self-advocates labelled with intellectual disabilities, academics, service providers, Aboriginal leaders, students and artists about intimate citizenship through love, intimate work and consumption.     

“Where’s the human dignity in that?”: LGBTQIA + people with intellectual disability exploring sexual lives and respectful relationships

Abstract

For people with disabilities, sexuality remains a contested and restricted space. This research investigated how the Sexual Lives & Respectful Relationships (SL&RR) program might be adapted for people with intellectual disabilities who identify as LGBTQIA+. The program included co-developed materials and specifically curated narratives. It was received positively. The facilitators identifying as members of the LGBTQIA+ community was also reported as positive. While an inclusive program might be ideal, participants expressed the view that community attitudes (including those of other people with intellectual disability) might not yet be conducive to integrated human relationships programs.     

In search of a level playing field – the constraints and benefits of sport participation for people with intellectual disability

This paper presents the results of a study seeking to examine the experiences of people with intellectual disability in a sporting context. The research design employed an online, interviewer-completed questionnaire in both a standard and an easy English version designed for administration by a third party for those requiring assistance to respond. Questions sought both quantitative responses about levels of participation and qualitative responses about constraints experienced and benefits received from participation. The results of the study show high levels of participation reported by people who are independent or have lower to moderate support needs, whereas people with high to very high support needs had substantially lower levels of participation. Constraints are examined for both those who participate in sport and those who do not. For those who do participate, the benefits were identified as overwhelmingly social in nature, including belonging, companionship and achievement.     

‘Being friends means helping each other,making coffee for each other’: reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.     

Should we provide oral health training for staff caring for people with intellectual disabilities in community based residential care? A cost-effectiveness analysis

Oral health training is often introduced into community-based residential settings to improve the oral health of people with intellectual disabilities (ID). There is a lack of appropriate evaluation of such programs, leading to difficulty in deciding how best to allocate scarce resources to achieve maximum effect. This article reports an economic analysis of one such oral health program, undertaken as part of a cluster randomized controlled trial. Firstly, we report a cost-effectiveness analysis of training care-staff compared to no training, using incremental cost-effectiveness ratios (ICERs). Effectiveness was measured as change in knowledge, reported behaviors, attitude and self-efficacy, using validated scales (K&BAS). Secondly, we costed training as it was scaled up to include all staff within the service provider in question. Data were collected in Dublin, Ireland in 2009. It cost between €7000 and €10,000 more to achieve modest improvement in K&BAS scores among a subsample of 162 care-staff, in comparison to doing nothing. Considering scaled up first round training, it cost between €58,000 and €64,000 to train the whole population of staff, from a combined dental and disability service perspective. Less than €15,000–€20,000 of this was additional to the cost of doing nothing (incremental cost). From a dental perspective, a further, second training cycle including all staff would cost between €561 and €3484 (capital costs) and €5815 (operating costs) on a two yearly basis. This study indicates that the program was a cost-effective means of improving self-reported measures and possibly oral health, relative to doing nothing. This was mainly due to low cost, rather than the large effect. In this instance, the use of cost effectiveness analysis has produced evidence, which may be more useful to decision makers than that arising from traditional methods of evaluation. There is a need for CEAs of effective interventions to allow comparison between programs. Suggestions to reduce cost are presented.     

Towards an agenda for disability research in Europe: learning from disabled people’s organisations

This paper addresses the challenges of building capacity for collaborative participatory research with disabled people’s organisations in European countries. The paper presents initial findings from the project ‘European Research Agendas for Disability Equality’ (EuRADE), which seeks to build the capacity of civil society organisations to participate in future research collaborations in partnership with academic institutions. The findings draw on survey data identifying the research capacity, needs and priorities of 68 organisations in 25 countries and focuses, in particular, on responses from national or European level representative organisations of disabled people. The findings demonstrate a high degree of motivation and readiness for collaboration in academic research but raise concerns about the readiness of academic institutions to engage disabled people as equal partners within social model and rights‐based approaches. Respondent organisations identified a wide range of research needs that raise challenges for collaborative responses from the academic community. In this way, the findings provide a basis for developing user‐led agendas for European funded research within the emancipatory paradigm, and indentify important opportunities for new international research collaborations between activists and academics.     

Tuning‐in to Teenagers! Using Radio Phone‐in Discussions in Research with Young People

Since the 1990s, research with children has witnessed epistemological changes which have challenged traditional research methods and have attempted to deconstruct notions of children as passive and incompetent. Such changes, epitomized by children‐centred research methods, aim to redress power imbalances by encouraging participants to select their own forms of communication. Participation and innovation are central to this approach. Simultaneously, but quite distinct from research methodology, community radio has become an important mechanism in promoting social inclusion. Globally, this means of community participation has been advocated by organizations that have utilized radio as an educational tool for promoting children’s rights. This paper suggests that the synthesis of radio phone‐in discussions with the ‘New Social Studies of Childhood’ forms a constructive basis for developing a participatory research method. Methodological issues arising from a teenage‐centred radio phone‐in will be explored. The paper concludes by discussing the viability of the radio phone‐in as a meaningful method for promoting teenagers’, often unheard, voices.     

Teaching pedagogies enhancing social work students’ perceptions and attitudes toward older age in an undergraduate course on working with older people

Approximately threefold increases in older age population groups (+65 years) are projected in the next 15 years. Demographic changes in society will mean greater numbers of older adults in proportion to the younger generation. In the current policy on older age groups, emphasis is placed on healthy aging warranting a multidisciplinary workforce to work with older people. Despite this need and increased demand in the aged care sector, a fewer social work students are willing to undertake aged care placements or to choose it as a career option.

An innovative teaching and learning pedagogy was used in designing the course curriculum titled ‘Social Work with Older People’, including the input of invited specialist guest speakers, an on-campus interactive workshop with older guests, and an assessment designed to evaluate the learning related to the workshop content. The paper reports changes in the attitudes of students studying gerontological social work after the course delivery, evaluated through an online survey with the purpose of improving the learning outcomes in the course and to gauge students’ interest, experiences, attitudes and motivation to work in the aged care sector. The paper contributes to building knowledge in addressing the needs of the changing social demographic.     

‘The seal of approval’: referring adults with intellectual disabilities and challenging behaviour to community learning disability teams

This article describes a study that involved interviewing eight managers of residential services, who have made referrals to community learning disability teams (CLDTs) for challenging behaviour. Thematic analysis and a critical perspective are combined to analyse and interpret what referrers said about the process of the referral. The study found that managers referred people with intellectual disabilities to the CLDT primarily in order to manage organisational problems rather than to directly manage challenging behaviour. The referrals enlisted the services of professionals to legitimise the residential services, to confirm their practices and to provide credibility to existing decisions by managers. In referring a man or woman with intellectual disabilities to the CLDT, the managers submit themselves, their staff and the person with the intellectual disabilities to the power of the health and psy-complex professionals.     

Reporting disability in the age of austerity: the changing face of media representation of disability and disabled people in the United Kingdom and the creation of new ‘folk devils’

Following its election in 2010 the UK’s Coalition Government has sought to implement radical restructuring of disability-related benefits justified by reference to the financial crises of 2007/08. In this article we examine how these changes have impacted on coverage of disability in the UK media comparing and contrasting coverage of disability in newspapers in 2010/11 with a similar period in 2004/05. Our analysis suggests that disabled people have become a ‘folk devil’ and that there has been a significant change in the way that disability is reported. Newspaper coverage in 2010/11 was less sympathetic and there was an increase in articles that focused on disability benefit and fraud, and an increase in the use of pejorative language to describe disabled people. An audience reception study suggests that this coverage is having an impact on the way that people think about disabled people.     

An exploratory analysis of community-based disability workers’ potential to alleviate poverty and promote social inclusion of people with disabilities in three Southern African countries

This article draws on accounts by community-based disability workers (CDWs) of their life and work experiences in resource-limited rural communities in Botswana, Malawi and South Africa. Using the World Health Organisation’s community-based rehabilitation (CBR) matrix and the United Nations’ Millennium Development Goals as analytic frameworks, the article explores CDWs’ potential to contribute to improving the lives and increasing the levels of social, economic and political inclusion of people with disabilities, their families and communities. The article argues that CDWs’ knowledge, experience and understanding of disability in resource-limited communities may constitute an important local resource for helping to address the inter-related effects of poverty and disability in developing countries.     

The changing face of the ‘good mother’: trends in research into families with a child with intellectual disability,and some concerns

This article reviews changing perspectives in recent social science research into families of children with intellectual disability. These latest trends emphasise family resilience, adaptation, and transformation, with the focus predominantly on mothers and their ability to psychologically adjust to their caring challenges. A concern is that by concentrating on the adaptive strategies of mothers, researchers risk minimising the socio-political dimensions of this experience. The theme of the ‘good mother’ figures strongly in this research, linked to the limiting socio-cultural narratives available to mothers of children with intellectual disability that, it is argued, may condone their continuing marginalisation.     

Can balance exercise programmes improve balance and related physical performance measures in people with dementia? A systematic review

This review presents the physical performance outcomes of randomised trials investigating exercise programmes that included balance exercise for older people with dementia. A systematic literature search through five computerised bibliographic databases until February 2009 was carried out. Of 1,038 potentially relevant published articles, only seven met the inclusion criteria and were extracted. Findings from the review for a total of 632 participants showed that almost all of the included studies addressed exercise or physical activities as the main intervention; however, only two of the studies focused on balance exercise. The effect size values varied from no effect (0.00) to a large effect (3.29) of the interventions for a range of physical performance outcome measures. Findings also suggest that it is feasible to conduct exercise programmes with older people with dementia. However, further studies with more specific exercise designed to improve balance performance in order to prevent falls are required for older people with dementia.     

The use of email‐facilitated interviewing with higher functioning autistic people participating in a grounded theory study

This paper explores the inclusive potential of computer‐mediated communication (CMC) for a ‘hard to reach’ group of research participants, specifically people at the higher functioning end of the autistic spectrum. Drawing on the literature pertaining to the fields of autism, CMC and research methods, as well as the first author’s experience of using email as a means of conducting interviews, the paper will discuss the epistemological, methodological and practical issues raised by the use of this method of collecting data from higher functioning autistic people, as well as its suitability in the context of a study guided by grounded theory.     

Family group conferences: from Maori culture to decision-making model in work with late modern families in Norway†

Models and methods within social work and child protection services are disseminated across cultural and national borders. The family group conference (FGC), with its origins in traditional Maori culture, is one example of this. The application of this model presupposes an ‘extended family’. Based on sociological theory, we highlight and problematise the explicit inattention to relevant cultural differences. The assumed existence of the extended family is implied in the direct translation of the term. The family in late modern society is often described as diversified, elective and shifting. We argue that FGC is relevant to such families. In our conclusion, we point out that despite changes, the family remains associated with traditional family values as solidarity and joint obligations, responsibilities and continuity. FGC vitalise traditional family values and facilitate for modern families performing traditional family practices. From our exploration of discourses and analyses on how FGC may be transformed from supporting Maori traditional culture to become a decision model in a CPS of a society such as Norway, we find there is a compliance with two fundamental factors: the late modern family's negotiating practices and the revitalisation of traditional family values.     

What does self-esteem have to do with behavioral health among low-income youth in Chicago?

Many studies have examined risk factors associated with poorer behavioral health among low-income African American youth, such as low school engagement, delinquency, mental health problems, drug use, and risky sex. However, fewer studies have examined protective factors for such behavioral health risk behaviors. This study sought to address this gap by examining whether high levels of self-esteem were associated with better behavioral health factors for this population. A survey was administered to a sample of 638 low-income African American adolescents in Chicago to examine the degree to which high self-esteem was associated with less delinquency, substance use, and sexual risk behaviors, and more school engagement, and whether such associations varied by gender. Stepwise linear and logistic regression models were estimated to assess the influence of self-esteem. Higher self-esteem for this sample of low-income African American adolescents was associated with lower rates of delinquency, drug use, and risky sexual behaviors and increased rates of school engagement. Gender moderated only a few of these relationships. These findings suggest that programs that promote high self–esteem alone or in combination with other resilience factors may promote better behavioral health factors for African American adolescents.     

How is participation related to well-being of homeless people? An explorative qualitative study in a Dutch homeless shelter facility

The majority of homeless people is socially excluded which negatively affects their well-being. Therefore, participation-based programs are needed. The current research is conducted within a Dutch homeless shelter facility that offers educational, recreational, and labor activities to clients in an environment which is designed to feel safe (an enabling niche). The main aim of these activities is to facilitate social participation. We conducted two qualitative studies consisting of 16 semi-structured interviews, to explore clients’ experiences with participation in activities in relation to their well-being. The findings showed that clients experienced that participation had led to an improvement of physical, social, and mental well-being. In general, clients reported that due to participation in activities they have strengthened their social support network, improved their (mental and physical) health, self-esteem and personal growth. We concluded that in order to facilitate long-term positive outcomes of participation in practice, it is necessary to focus on group cohesion, and on the social worker’s behavior and attitude.     

‘How dare you pretend to be disabled?’ The discounting of transabled people and their claims in disability movements and studies

Although the contours of the ‘disabled person’ category are questioned by anti-ableist activists, they remain rigid regarding transabled people (who want to become disabled). For anti-ableist activists, transabled people do not count as disabled. They are perceived to: be falsely disabled; steal resources from disabled people; and be disrespectful by denying, fetishizing, or appropriating marginalized realities. By combining critical discourse analysis, genealogy, and deconstruction, I examine these negative discourses to encourage alliances between anti-ableist activists and transabled people. Ideas developed in disability and trans studies reveal the limits of these discourses anchored in ableist and cisnormative* assumptions.     

Self-advocacy among people with disabilities in the transition from good will to civil rights: Is it sufficient?

The burdens associated with eliminating discrimination on the basis of disability have been bestowed upon those individuals in our society with the least experience in defending themselves from social and interpersonal bias. Offering people with disabilities training in civil rights, barrier identification, interpersonal communication, and problem solving skills to enhance and empower self-advocacy have been the primary means of government sponsored human service institutions to generate the desired social change. There is evidence that these actions are less than effective. Overt public commitment and outreach efforts are needed to effectively elicit change from those individuals who are directly responsible for discriminatory actions.