Disabled People's Organisations Research Articles

A realist evaluation of the formation of groups of people with disabilities in North India

Background: Disabled Peoples’ Organisations (DPOs) are organisations established by and for people with disabilities. Formation of Disabled Peoples’ Groups (DPGs) and DPOs in low- and middle-income countries is currently one method for implementing disability-inclusive development strategies. While there is evidence that such groups can achieve beneficial outcomes for people with disabilities, they seem to form and function differently in different settings and little is understood about why this is the case. This study aimed to explore how and why different factors affect the development and operation of DPGs by investigating the contextual factors and mechanisms that enable and hinder the formation and functioning of DPGs in North India. Methods: This study adopted a realist approach to evaluation. Preliminary context-mechanism-outcome configurations were developed, tested empirically, and refined by undertaking five case studies in the state of Uttarakhand, India. Results: Results from this study were grouped under the broad, emergent themes of factors related to: 1) external supports; 2) community and physical environment; and 3) group composition. It was found that external entities could support the development of DPGs by advocating for the rights of people with disabilities, and providing information, knowledge, and funding to groups. Support from local village leadership was central to facilitating group formation and functioning, but the benefit of this support was amplified when DPGs formed strong networks with other similar groups. DPGs displayed a capacity for stimulating positive societal changes in regard to disability through influencing societal understandings of disability, and improving inclusion and participation of people with disabilities. Conclusions: While the results of this study were specific to the context in which it was undertaken, many findings were consistent with those in the literature, suggesting that there may be common principles that can be applied to other contexts. By providing insight into the contextual factors that affected DPG formation and function, the findings of this study may assist those involved in DPG formation to adapt models and methods to better suit specific contexts.

Leveraging the London 2012 Paralympic Games

The International Paralympic Committee, U.K. Government, and the Organizing Committee for the London 2012 Olympic and Paralympic Games all contended that the London 2012 Paralympic Games would positively impact the lives of disabled people in the United Kingdom, particularly with regard to changing nondisabled attitudes toward disability. All three have claimed partial success during the course of the 4-year period (Olympiad) separating the London and Rio Paralympic Games. However, this is at odds with the findings of Disabled People’s Organizations (DPOs) and the experiences of disabled individuals. This article considers the claims of both sides against a backdrop of public policies that are targeting large-scale benefit cuts, the media coverage of which actually appears to be hardening attitudes toward anyone on benefits and negating any positive impacts from the Games themselves. It argues that the continued predominance of “ableist” perspectives on disability underpins many of the challenges faced by disabled people. The article adopts a historical perspective on the development of legacy-based foundations upon which the disability sport and Paralympic movements originated. It contends that the gradual move toward an elite “Olympic” sports model of competition has actually served to undermine these foundations.

HandiVIH—A population-based survey to understand the vulnerability of people with disabilities to HIV and other sexual and reproductive health problems in Cameroon: protocol and methodological considerations

IntroductionIn resource-limited countries, people with disabilities seem to be particularly vulnerable to HIV infection due to barriers to accessing information and services, frequent exposure to sexual violence and social exclusion....

Services for people with communication disability in Fiji: barriers and drivers of change

The World Health Organization's World report on disability calls upon all nations to 'remove the barriers which prevent [people with disabilities] from participating in their communities; getting a quality education, finding decent work, and having their voices heard' (p. 5). People with communication disability (PWCD), as a consequence of their atypical communication, may be more likely to be excluded from society, and denied their basic human rights, than other people with disability. Fiji, a multicultural and multilingual nation in the south-western Pacific Ocean, has limited services for PWCD. Service providers in Fiji include disability care workers, special education teachers, traditional healers, and a small number of visiting volunteer speech-language pathologists. This paper outlines the historical and current barriers to, and drivers of change for, service development for PWCD in Fiji. Five barriers to service development for PWCD in Fiji were identified. (1) A major structural barrier is the small population size to develop appropriate infrastructure including professional education programs. (2) Geographical barriers include the dispersed geography across 300 islands, low population density, the rural-urban divide, and risk of disaster from cyclones and flooding. (3) Linguistic diversity, while culturally important, can present a barrier to the provision of quality services that are available in the languages spoken by PWCD. (4) Cultural barriers include historical political instability, although Fiji has become more stable due to the recent democratic elections. The social climate affects development of services that are appropriate for different dominant cultural groups. (5) Financial barriers include low gross domestic product, low financial security and low human development index; however, the financial outlook for Fiji is steadily improving due to the change in political stability. Three levels of drivers of change were identified. Macro-level drivers included Fiji's endorsement of international policy and increased globalisation (eg tourism). Meso-level drivers of change included receipt of foreign aid and support from international non-government organisations, development of disability-inclusive legislation and policy within Fiji, and strengthening of government policies that support disabled people's organisations. Micro-level drivers of change included establishment of disabled people's organisations by consumers, adoption of disability-inclusive policy and procedures by service providers, and changes in the perceptions of disability within the general community. Fijian prevalence data confirms that there is an underserved population of PWCD in need of specialist services. Significant advocacy work in the disability field by Fijian and international disabled people's organisations has led to the Fiji government signing international policy (eg Convention on the Rights of Peoples with Disabilities), inclusion of disability rights in national legislation (eg 2013 Constitution of Fiji Islands) and localised policy and practice documentation (eg inclusive education policy by the Fiji Islands Ministry of Education). Continued service development is required if Fijians with communication disability are to have their needs met. The drivers of change at all levels are positioned well to overcome current barriers to change; however, a coordinated approach including macro-, meso-, and micro-level drivers is required to ensure the future development of adequate services for PWCD in Fiji.

Women with disabilities in leadership: The challenges of patriarchy

abstractIn Africa women with disabilities remain marginalised and struggle to claim their fundamental human rights as enshrined in the United Nations Convention on the Rights of Persons with Disabilities and the Convention on the Elimination of All Forms of Discrimination Against Women. This focus explores the experiences of women with disabilities in leadership positions in disabled people's organisations (DPOs) in Zimbabwe. A group of eight women leaders with disabilities in DPOs in Harare and Bulawayo were interviewed for the study over a period of three months during 2011. This article focuses on the core themes that emerged. Discussion of their challenges and experiences reveals the complexity of the interface between disability and culture, which created dynamic intersections between patriarchy and the gendered power relations experienced by the participants. Their experiences suggest that patriarchy continues to restrain full participation of women in leadership in DPOs in Zimbabwe, which is consistent with the global trend. Implications for exercising of leadership by women with disabilities who are active in the disability movement are also considered.

Pemenuhan Aksesibilitas Bagi Penyandang Disabilitas

Accessibility is a very pivotal discourse for people with dissabilities as it encourages their equal participation and independence in the society. Accessibility, in this paper, is divided into 2 (two) kinds, which are physical and nonphysical one. The physical accessibility refers to accesibilty in the relations with buildings and environment whereas the nonphysical one corresponds to communication, information and technology. This paper also reveals testimony from various activists of DPOs (disabled people organizations). The data presented here was collected in 2012 through qualitative study in DIY (Yogyakarta Special Province). The paper concludes that eventhough Indonesia has been enacted regulations on accessibilty to people with disabilities, its implementation is ineffectice and discrimination still occurs to the population.

Perceptions of People who are Deaf on Sign Language Teaching and Communication by Hearing People: Harare Urban, Zimbabwe

The qualitative approach and the phenomenology design were employed to collect data for the study. Using in-depth interviews, observations and document analysis, the study explored the perceptions of ten people with profound Deafness on the teaching and use of the Zimbabwean Sign Language (ZSL) in Zimbabwe by hearing people. Purposive sampling was employed to select the participants for the study from the population of people who are Deaf in the streets of Harare urban. Two directors, one from the umbrella board of people with disabilities, the National Association for Societies and Care of the Handicapped (NASCOH) and the other director was from Zimbabwe National Association of the deaf (ZIMNAD), both are described as Disabled People Organisations (DPOs) in this study, they were automatically selected to participant in the study. Interest and profound Deafness were used as criteria for the sample selection. In Zimbabwe, use of SL in day- to- day communication and learning did not have a legal status until March 2013. The current acceptance of SL as one of the 16 th languages in the 2013 constitution, though awaiting domestication, triggered this study. The study revealed that hearing people were influencing the type of SL the people who are Deaf should learn. The study declared people who are Deaf as the experts to the SL that should be taught or used in Zimbabwe. The study aims to place Zimbabwe amongst global competitors on issues of Deaf education.

Organising for self-advocacy in mental health: Experiences from seven African countries

This paper reports on overarching strategies which supported the establishment and sustainability of 9 mental health self-help organisations in seven African countries. Eleven key informants were identified through snowballing and interviewed regarding their experience in the organisations. Thematic analysis of the interview data and other documentary evidence was guided by a coding scheme derived using a framework analysis approach to defining, categorising, mapping and interpreting textual data. Sustainability strategies include: commitment to members' advocating for their rights and rebuilding their lives within their communities; independent decision-making, user-led membership and leadership; financial self sufficiency, alliances with donor organisations, non-governmental organisations (NGOs), disabled people's organisations (DPOs) and ministries which support self-determination and promote control over agenda-setting and responsiveness to members' needs. Organisations' work include advocacy to destigmatise mental disorders and promote the protection of users rights, activities to improve access to health care and to income generation and social support, participation in legislative and policy reform, and capacity building of members. Self-help organisations can provide crucial support to users' recovery in resource-poor settings in Africa. Support of Ministries, NGOs, DPOs, development agencies and professionals can assist to build organisations' capacity for sustainable support to members' recovery.

Barriers to the participation of people with psychosocial disability in mental health policy development in South Africa: a qualitative study of perspectives of policy makers, professionals, religious leaders and academics

BackgroundThis paper outlines stakeholder views on environmental barriers that prevent people who live with psychosocial disability from participating in mental health policy development in South Africa.MethodFifty-six semi-structured interviews with national, provincial and local South African mental health stakeholders were conducted between August 2006 and August 2009. Respondents included public sector policy makers, professional regulatory council representatives, and representatives from non-profit organisations (NPOs), disabled people’s organisations (DPOs), mental health interest groups, religious organisations, professional associations, universities and research institutions.ResultsRespondents identified three main environmental barriers to participation in policy development: (a) stigmatization and low priority of mental health, (b) poverty, and (c) ineffective recovery and community supports.ConclusionA number of attitudes, practices and structures undermine the equal participation of South Africans with psychosocial disability in society. A human rights paradigm and multi-system approach is required to enable full social engagement by people with psychosocial disability, including their involvement in policy development.

Disability meta-organizations and policy-making under new forms of governance

Disability meta-organizations are playing a significant role in influencing the development of disability policy. An example of this is the Disabled Peoples Organizations – Denmark (DPOD), which has managed to unify the disability movement and place itself in a unique position of power. The strategy of DPOD is based on organizational adaptation fitting into the institutional settings of government and building its influence on dialogue, and the establishment of a relationship of trust with political actors in network-based political settings. The change in governance towards cooperation through formal disability councils at municipal level requires the ability to recruit an increasing number of politically active representatives of disabled people. Tensions based on identity conflicts and different political priorities are revealed between different kinds of member organizations when representatives of DPOD are placed in political settings delegated to speak on behalf of disabled people in general.

Perceptions of the availability and effectiveness of HIV/AIDS awareness and intervention programmes by people with disabilities in Uganda

The study investigated perceptions of the availability and effectiveness of HIV/AIDS awareness and intervention programmes by people with disabilities in Uganda. Participants (N=95) were made up of 15 leaders of disabled people's organisations (DPOs) and 80 people with disabilities (PWDs). A survey design which used both quantitative and qualitative research methods was adopted. A questionnaire was used for leaders of DPOs while focus group discussions (FGDs) were held with the rest of the participants. Descriptive statistics were used to analyse the quantitative data. The qualitative data were analysed by means of a content analysis. The study found that although PWDs were aware of the HIV/AIDS pandemic, they felt discriminated against on HIV/AIDS issues. The PWDs had difficulties in accessing HIV/AIDS services because of mainly communication problems. Results further revealed that the HIV/AIDS policy on disability was not very clear. The PWDs requested for full involvement in HIV/AIDS advocacy and training programmes. Recommendations were made.

Evaluation of nursing and medical students’ attitudes towards people with disabilities

The aim of this study is to assess the attitudes of students towards disabled people and provide suggestions to make necessary changes in the curricula. Disabled people suffer from rejection, exclusion and discrimination. The undergraduate education of future health professionals should include processes of critical thinking towards and analysis of the disabled. Cross-sectional design was used. All the preclinical medical and nursing students in our institution were included in study. Data were collected using the Turkish Attitudes towards Disabled Person Scale (TATDP) and demographical variables. TATDP Scale was scored according to five-point Likert Scale. Students' mean attitude score is 120.57 (SD 15.24). Subscale mean scores are 53.61 (SD 7.25) for compassion (CP), 50.47 (SDS 7.26) for social value (SV) and 16.49 (SD 2.89) for resource distribution (RD). Whilst nursing students had less contact with the disabled, medical students had a closer contact with them. Medical students acquired more prior knowledge about attitudes towards the disabled. Total attitude scores of female students were above the students' mean attitude score when compared to those of male students. Only if early contact is established with patients and the disabled, practical educational strategies are adopted, and the students are provided with information on attitudes about the disabled, will a social model of disability be introduced into the curriculum. This study results were presented to curriculum planning committees of nursing and medical schools, so that they should use them as needs assessment data in developing a disability awareness curriculum. The curriculum will be implemented in cooperation with not only schools but also other social institutions. For instance, clerkship applications will be accomplished by cooperating with nursing homes and organisations of disabled people.

Realising the rights of disabled people in Africa: an introduction to the special issue

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) has now entered into international law. It requires that all governments take cognisance and action to ensure that the human rights of people with disabilities are realised. This will be particularly challenging in some of the poorest countries; a fact recognised by the Convention's requirement that all international aid-giving countries address disability as part of their programmes. This Special Issue of Disability and Rehabilitation arises from the first conference of a new network – the African Network for Evidence to Action on Disability (AfriNEAD) – which was established to address, on a regional basis, the ‘know-do' gap, in the field of disability. Papers in this special issue address a broad range of themes including the measurement of disability; the involvement of persons with disability in the design, conduct and analysis of research on disability; the role of Community Based Facilitators; the impact of HIV/AIDS on people with disabilities, and the challenges of mainstream schooling for children with disabilities. Promoting the human rights of persons with disabilities places an obligation on us all to ensure that the value of research goes beyond publication, to influence policy and practice. One important way of promoting efforts to collectively achieve this is through networks of disabled people's organisations, practitioners, policy makers and researchers working together.

The participatory development of international guidelines for CBR

The CBR Guidelines are being developed by UN Agencies and civil society groups including disabled people's organisations (DPO). The aim of the CBR guidelines is to enhance the quality of life of people with disabilities including those affected by leprosy. Strong linkages between leprosy programmes and CBR will optimise the benefit of medical care and ensure leprosy-affected people access all relevant services that promote inclusion and participation. The World Health Organisation introduced the concept Community Based Rehabilitation (CBR) in the early 1980s. CBR was designed to enhance the quality of life for people with disabilities through community initiatives. To facilitate this, WHO published a CBR Manual 'Training in the community for people with disabilities' in 1989. Since then there have been many developments within and outside the disability sector. Based on these global developments and as a result of stakeholder consultation, ILO, UNESCO and WHO updated the CBR Joint Position Paper (2004) and restructured CBR as a strategy for rehabilitation, equalisation of opportunities, poverty reduction and social inclusion of people with disabilities. The purpose of this Joint Position Paper was to describe and support the concept of CBR as it is evolving, with an emphasis on human rights and a call for action against poverty. The Convention on the Rights of Persons with Disabilities aims to ensure that they enjoy human rights on an equal basis with others. Guidelines on how to implement CBR respond to the demands created by the publication of the Joint Position Paper and The Convention on the Rights of Persons with Disabilities. The CBR Guidelines are being developed by three UN agencies: WHO, ILO and UNESCO. It is being actively supported by 13 International Non Governmental Organisations (NGO) including Disabled People's Organisations (DPO). Over 150 experts from across the globe have contributed to the draft guidelines which are being field tested in 25 countries. The guidelines have five major components: health, education, livelihood, social and empowerment. Beside these five components, the Guidelines also focus on management of some special scenarios including CBR and HIV/AIDS, CBR and leprosy, CBR and mental health and CBR in crisis situations. The CBR guidelines also underline that people with leprosy-related disability are seen as members of the disability community in the wider context given the shared experiences and challenges. The CBR guidelines are an important step forward in promoting CBR as a community based inclusive development strategy. The guidelines focus on meeting basic needs, reducing poverty, accessing benefits of mainstream developmental initiatives, inclusive community and empowering people with disabilities and their families. It also focuses on implementing the Convention on the Rights of Persons with Disabilities using community-based initiatives. People with leprosy are often neglected by traditional CBR programmes. These guidelines make the case for including people with leprosy in CBR programmes and in the community.

Disability and Disaster Recovery

This paper examines the connections between disability and disaster from a global perspective. Concepts from the research and policy literature are used to distinguish between individual and social models of disability, and between natural hazards and human disasters. These concepts are then employed to investigate data on the response to disabled people's recovery needs in two recent case studies: the Asian tsunami and Hurricane Katrina. The analysis combines primary, secondary and tertiary sources to explore disability issues in the reconstruction of inclusive communities and the lessons that may be learned about disaster preparedness in poor communities. The conclusions suggest that more attention should be paid to social model approaches, particularly in understanding global links with poverty, and that disabled people's organisations should be resourced as agents of disaster recovery and preparedness.

Reclaiming Agency, Ensuring Survival: Disabled Urban Ghanaian Women's Negotiations of Church and Family Belonging

This paper draws from a narrative ethnography of women members of disabled people's organizations (DPOs) in Accra, Ghana. Through recounting their autobiographical stories, elicited in multiple interviews, it explores how they navigate tensions among disability status, material survival, family belonging and religious participation Finding themselves neither fully acknowledged in family roles nor as religious community members, disabled women struggle to carve out spaces of self-determination and well-being between families and religious institutions, and between their developing aspirations and the circumscribed options available to them at the intersections of poverty, gender and disability. Women draw from multiple experiences, communities and discourses to interpret disability in complex and varied ways, not solely within the "moral models" often attributed to African cultures. Utilizing three biographical narratives from a 2003-2004 qualitative study, this paper shows how urban Ghanaian women with disabilities work to redefine themselves as social participants, and indeed as fully human, through engagement with religion. Implications for disability activism are discussed in the paper's conclusion.

International guidelines and the inclusion of disabled people. The Ugandan story

Uganda has made much progress towards including disabled people in its mainstream development, particularly in the political agenda. The exact process by which this has been achieved and the relationship between this and international guidelines and legislation are not known. This study undertakes to examine this from two specific perspectives: (1) How do international documents relevant to disabled people relate to national legislation in Uganda? (2) What can this comparison, together with the perceptions of stakeholders, tell us about how the legislation and services could improve? International legislation and Ugandan legislation is reviewed and compared. Data from 5 semi‐structured key informant interviews and 6 focus group discussions involving a total of 38 people are collected and analysed. The themes arising from the data are related to the documents, legislation, policies and other relevant literature. The results examine the barriers to service provision; the role of change; the importance of representation; policy and legislation issues; and the effects of devolution. Five specific findings relate to how legislation and services can improve: more resources to increase access for disabled people; strong leadership and collaboration between Disabled People’s Organisations (DPOs) funding bodies and governments; awareness raising and training; representation from all impairment groups; and raising the profile of disabled people through further legislation.

Perspectives on disability in Afghanistan and their implications for rehabilitation services

Twenty years of conflict has severely disrupted the infrastructure and economy of Afghanistan. Disability levels are high and much of the population has little access to health facilities. Re-establishing and strengthening rehabilitation services is therefore an important country priority. The aims of this study were to explore perceptions of the nature of disability in Afghanistan and to identify implications for the development of rehabilitation services. Over a 4-week period, interviews and focus groups, supplemented by field observations, were held with a range of service users and other stakeholders (including physiotherapist service providers and representatives of the Afghan Disability Committee) in the districts of Kabul and Herat. Data analysis identified three core themes in discussions with respondents: the nature of disability, causes of disability and rehabilitation priorities for people with disability (PWD). Afghan society distinguishes between traumatic and congenital disability, but disability awareness is much greater for persons with traumatic disability. This group enjoys much greater representation in disabled people's organizations. There is a strong cultural responsibility to care and provide for PWD rather than to encourage independence. Healthcare professionals reflect a medical model in their attitudes towards PWD. A key priority of PWD is economic. There is a low understanding of rehabilitation practice by PWD and medical staff. Training for rehabilitation workers and wider health professionals needs to reflect greater emphasis on a social model of disability. Public awareness and enablement of people with congenital disability needs to be raised.

HIV/AIDS information and services: The situation experienced by adolescents with disabilities in Rwanda and Uganda

Purpose. The study had 2 aims: (1) To explore whether knowledge about HIV and AIDS was similar among adolescents with disabilities compared with their non-disabled peers; and (2) To determine factors which may increase vulnerability of disabled adolescents to HIV infection and/or inappropriate access to HIV related services.Method. A qualitative study using focus group discussions and semi-structured interviews was conducted with purposefully selected participants in Rwanda and Uganda. The participants included disabled adolescents, non-disabled adolescents, parents, teachers, members of disabled people's organisations and representatives of HIV/AIDS organisations. Interviews explored issues of HIV/AIDS knowledge, access to HIV/AIDS services and perceptions of personal risk.Results. Barriers preventing adequate access to information about HIV and AIDS experienced by adolescents with disabilities depended on the nature and severity of the impairment. For example, parents and health workers were unable to communicate with deaf adolescents using sign language, adolescents with physical impairments were often unable to access community meetings about HIV and print material was not adapted for those with visual impairments. Further, assumptions by health workers and community members that people with disabilities were not sexually active lead to the marginalisation of disabled people from HIV services. Adolescents with disability described low self esteem and issues of self efficacy affecting control of safer sexual relationships. A high level of targeted abuse, rape and exploitation was reported leading to vulnerability among this population.Conclusion. The impact of the HIV epidemic among people with disabilities is a neglected area. This study supports the need to develop strategies in HIV prevention programmes that include people with disabilities.

‘I have got my life back’: users' experience of direct payments

After years of activism by disabled people's organizations, the Community Care (Direct Payments) Act 1996 made Direct Payment (DP) schemes a reality. Proponents of DP argue that it allows greater freedom and control for those people using it, but as these programmes only came into effect in 1997, few studies have tried to substantiate these claims. This paper reports on a two‐year evaluation of two DP schemes in Wales. Using primarily users' feedback the paper focuses on the effects of DP and difficulties encountered, as well as why people chose—or did not choose—DP in the first place. User responses indicate a broad range of beneficial outcomes, including improved self‐esteem, increased control over lives, deeper and more lasting relationships, and new interpersonal, vocational and lifestyle opportunities, as a result of the greater flexibility and freedom of choice enabled by DP. Family carers expressed similar satisfaction with DP schemes, also citing greater freedoms as a result of increased flexibility. While some potential users expressed concern over the administration of a DP scheme, users found that, with support from a user driven Independent Living Scheme, the administrative burden was manageable, and that ultimately the DP scheme was a welcome approach to support.