Disabled People's Organisations Research Articles

A Case Study of Doormat Craft Business Management by Disabled People's Organizations

The Pusat Pemberdayaan Mitra Sejahtera (PPDMS) is a Disabled People's Organization (DPO) in Indonesia that continued operating its doormat craft business during the COVID-19 pandemic. This was a unique time, given many constraints on workers in Indonesia. This study aimed to explore the challenges PPDMS faced while running their doormat craft business during the COVID-19 pandemic and what strategies they used to overcome these challenges. A case study was used to explore the unique characteristics of DPO entities and their strategies to continue a sustainable business during the pandemic. Research participants included organizational leaders, members, coordinators, partner subsidiaries, and families of persons with disabilities. Data collection techniques included interviews, observation, and document review. The research findings revealed determinants of the DPO's survival in the doormat craft business, namely (a) transformative leadership based on cooperation, (b) productivity of DPO members and their families, and (c) assistive technology for accessible doormat craft. These findings can inform good practices that can be disseminated to other DPOs.

Designing, Making, and Validating Accessible Products and Services

Participatory accessibility, i.e., the involvement of users in the design, making, and validation of accessible products and services, has been encouraged under the premise that it would ultimately prove beneficial both in terms of usability and user satisfaction. This article examines the role of users and Disabled People Organisations (DPOs) in the design and validation of access services by providing the results of four in-depth interviews with representatives of non-profit organisations active in Catalonia. The main topics covered in the interviews include users’ views on design, production, and validation processes, the training and professionalisation of user consultants and validators, and users’ input on standards. The results show that users are mainly involved in validation actions today. They are only rarely considered in early stages of the production chain. DPOs see the occasional exceptions to this trend as a positive indicator that processes may change in the near future. They demand the true integration of persons with disabilities in all the links in the production chain and, crucially, in management positions, as the only way to effectively cater for users’ needs. Lay summary It is commonly agreed that end users, including persons with disabilities, need to be involved in the creation of products or services that aim to be accessible. This is because nobody is more familiar with their specific needs than themselves. This article presents results of four interviews with representatives of non-profit organisations in Catalonia who actively work with persons with disabilities. To begin, we ask them to offer their definition of accessibility as end users. After that, we ask them to what extent they think users are involved in the design of new products and services, as well as on their role in validating such products and services once they are made available to the general public. They explain that the participation of persons with disabilities often comes too late, i.e., when products are already designed, and that there is still a big task to do in terms of truly integrating persons with disabilities in management positions, which they see as the way to improve the present situation.

Bridging the divide: understanding collaborative action in disability-inclusive disaster risk reduction through socio-cultural activity theory

PurposeThis paper presents a methodological reflection on the use of socio-cultural activity theory (SCAT) as a framework to understand collaborative action and problem-solving between people with disabilities and non-disabled stakeholders in three disaster risk reduction (DRR) initiatives led by Disabled People's Organisations (DPOs) in Indonesia.Design/methodology/approachThis paper is based on case study research, using a multiple case design. It looks at the conception and implementation of three DPO-led DRR projects in Indonesia. It focuses hereby on the processes and outcomes of collaborations between DPOs and non-disabled stakeholders. It presents a reflection as to what extent the six elements of SCAT were present.FindingsThe investigation of SCAT's six elements captured the co-construction of DPO-led DRR projects and constant changes and transformation in implementation. The findings reveal the dynamics of the collaboration between DPOs and non-disabled stakeholders (e.g. funding donors, DRR experts, government and community groups) and its outcomes and learning points.Practical implicationsSCAT can provide a better understanding of collaborative learning processes and associated outcomes between DPOs and DRR actors. Such collaborations facilitate the timely and relevant inclusion of people with disabilities in DRR initiatives through DPOs' leadership in DRR. Furthermore, such initiatives can promote the realisation of the disability-inclusion principle of the Sendai Framework for DRR, which is underpinned by the all-of-society approach to DRR.Originality/valueThis paper presents a reflection on the use of SCAT in inclusive disaster studies, thereby enabling further investigation and understanding of how the collaboration between disabled and non-disabled stakeholders occurs, and its implication. This is a topic that has been rarely tackled in the disability and disaster studies literature and practice.

Mapping the development of disabled people’s organizations in China: main types and current status

Little is known about China’s disabled people’s organizations (DPOs) in the current research literature. This article, partly in response to the prior journal article by Zhang (Disability & Society 32 (7): 1096–1101, 2017), attempts to map the four main types of DPOs in China and analyze their current status using the case of Shanghai. In addition to the Disabled Persons’ Federation, the other types include five specialized associations, nonprofit organizations, and voluntary groups. This study preliminarily presents the number of DPOs, their government funding and changing registration management system. It is hoped that researchers will pay more attention to DPOs in non-Western settings and perform more comparative studies between China and other developed countries in the future.

How Could Equality and Data Protection Law Shape AI Fairness for People with Disabilities?

This article examines the concept of ‘AI fairness’ for people with disabilities from the perspective of data protection and equality law. This examination demonstrates that there is a need for a distinctive approach to AI fairness that is fundamentally different to that used for other protected characteristics, due to the different ways in which discrimination and data protection law applies in respect of Disability. We articulate this new agenda for AI fairness for people with disabilities, explaining how combining data protection and equality law creates new opportunities for disabled people's organisations and assistive technology researchers alike to shape the use of AI, as well as to challenge potential harmful uses.

Policy Implementation Challenges and Barriers to Access Sexual and Reproductive Health Services Faced By People With Disabilities: An Intersectional Analysis of Policy Actors' Perspectives in Post-Conflict Northern Uganda.

Emerging from a 20-year armed conflict, Uganda adopted several laws and policies to protect the rights of people with disabilities, including their sexual and reproductive health (SRH) rights. However, the SRH rights of people with disabilities continue to be infringed in Uganda. We explored policy actors' perceptions of existing pro-disability legislation and policy implementation, their perceptions of potential barriers experienced by people with disabilities in accessing and using SRH services in post-conflict Northern Uganda, and their recommendations on how to redress these inequities. Through an intersectionality-informed approach, we conducted and thematically analysed 13 in-depth semi-structured interviews with macro level policy actors (national policy-makers and international and national organisations); seven focus groups (FGs) at meso level with 68 health service providers and representatives of disabled people's organisations (DPOs); and a two-day participatory workshop on disability-sensitive health service provision for 34 healthcare providers. We identified four main themes: (1) legislation and policy implementation was fraught with numerous technical and financial challenges, coupled with lack of prioritisation of disability issues; (2) people with disabilities experienced multiple physical, attitudinal, communication, and structural barriers to access and use SRH services; (3) the conflict was perceived to have persisting impacts on the access to services; and (4) policy actors recommended concrete solutions to reduce health inequities faced by people with disabilities. This study provides substantial evidence of the multilayered disadvantages people with disabilities face when using SRH services and the difficulty of implementing disability-focused policy in Uganda. Informed by an intersectionality approach, policy actors were able to identify concrete solutions and recommendations beyond the identification of problems. These recommendations can be acted upon in a practical road map to remove different types of barriers in the access to SRH services by people with disabilities, irrespective of their geographic location in Uganda.

Personalisation and the Promise of Independent Living: Where Now for Cash, Care and Control for Disability Organisations Across the UK?

Personalisation has dominated social care across OECD countries over the past 20 years. UK policy evolved from the efforts of disabled peoples’ organisations (DPOs) to secure the availability of cash payments as part of a wider drive to enable independent living. Implementation of personalisation across the UK has seen significant divergence in how governments have developed their own responses, but in each country the DPOs’ role and impact has shifted from campaigning and promoting the voices of disabled people to a more muted focus on service provision and limited policy engagement. This article draws on a series of interviews with DPOs and leading disabled activists. It highlights concerns raised related to themes around austerity, changing relationships with local government and the role of co-production in developing policy. We conclude the article by discussing the future directions for personalisation and developments in light of the COVID-19 pandemic.

Reconceptualising teacher education for teachers of learners with severe to profound disabilities

ABSTRACT This paper considers teacher education for teachers of learners with severe to profound disabilities (SPD) in South Africa, in both formal and non-formal learning programmes within a disability studies in education framework. Qualitative data were collected from a range of education stakeholders including non-governmental (NGOs) and disabled people organisations (DPOs). Based on a thematic analysis, findings show limited pre-service teacher education programmes focused on teaching learners with SPD. In-service teacher training through education departments and NGOs and DPOs, is usually through basic short courses or workshops and are not complemented by on-going support. We argue for a reconceptualization of teacher education in South Africa to prepare teachers to meet the diverse needs of learners, including those with SPDs within an inclusive education context. Skills in addressing barriers to learning should be infused throughout initial teacher education, in line with the principles of universal design for learning while impairment-specific knowledge can be offered in related modules that focus on reasonable accommodation for children with disabilities. In-service education can occur in formal and informal programmes and should empowers teachers to become lifelong learners.

Preparedness of civil society in Botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities.

BackgroundIn low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. Non-governmental organisations (NGOs) and disabled people’s organisations (DPOs) can help to address this. However, in countries like Botswana we know little about the preparedness of NGOs and DPOs to increase inclusion in and access to programmes addressing violence.ObjectivesTo explore the capacity and preparedness of NGOs and DPOs to ensure that women and girls with disabilities can participate in and access programmes addressing violence.MethodsA qualitative study was undertaken using interviews with 17 NGOs and DPOs in Botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls.ResultsBoth NGOs and DPOs lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. Some programmes address violence against women but lack skills and resources to accommodate people with disabilities. In contrast, DPOs work with people with disabilities, but lack focus on violence against women with disabilities. Participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking.ConclusionsBotswana’s NGOs and DPOs are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. Training, resource allocation and participation of women with disabilities in NGOs and DPOs is needed to drive this change.

How Do Economically Active People with Disabilities Access Microfinance?

Abstract:Many economically activepeople with disabilities do not haveaccess to affordable financialproducts and services. The consequence is that not only do people with disabilities experience social exclusion, but they also struggle to secure their financial lives. Althoughmicrofinance has been widely used in Bangladesh formore than three decades as a tool for reducing poverty and empowering poor people, few Microfinance Institutions (MFIs) recently started providing microfinance to some selected economically active people with disabilities. However, very little evidence exists to show how people with disabilitiesaccess microfinance. Therefore, the aim of this research is to identify the barriers or challenges that people with disabilities face to access microfinance. This study uses a qualitative case study approachbased on interviews with thirty-five economically active people with disabilities and ten stakeholdersalong with document analysis and observation as a tool for research data collection. Data analysis was conducted usingthematic analysis, with findings showingthat people with disabilities face substantial barriers to access microfinance. These barriers includeharder credit conditions, lack of social capital, negative staff attitudes,no or insufficient training,andabsence of an integrated approach. Theresearch suggests that the government should formulate an integrated policy framework aiming to help people with disabilities for financial inclusion. Moreover, Non-GovernmentalOrganizations (NGOs), Disabled People Organizations (DPOs), MFIsandpeople with disabilities couldcome together todevelop an effective partnership for designing social and economic development programs that canempower people with disabilities. Finally, this research suggestssome of the key strategies such as to develop MFI’s anti-discrimination policiesand theirimplementation, convenient credit designfor people with disabilities, improve skills, enhance capacitiesand, build self-confidence of people with disabilities. Furthermore, this research recommendsthat MFIs couldprovide financial literacy to people with disabilities, trainingto MFIs staffon disability issues, raise awareness among credit group membersabout disability, and more importantly identify people with disabilitiesespecially in the rural areas to enhance financial inclusionof people with disabilities.

Transposing the Convention on the Rights of Persons with Disabilities in Africa: The Role of Disabled Peoples’ Organisations

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) was adopted and ratified with unprecedented support from states, including those on the African continent. In large measure this was precipitated by the remarkable work of disabled peoples’ organisations (DPOs). However, CRPD ratification is only the first step in a long process which African states parties must undertake to manifest the treaty's provisions in the lived experiences of persons with disabilities. This article examines opportune avenues for advocacy by African DPOs to engage with constitutional and statutory reform processes, disability-specific policies and their implementation, strategic litigation and national-level development planning. In doing so, we draw on the rich experiences and best practices already evidenced by many of these civil society organisations in domesticating provisions of the CRPD into legal, social, political, economic and institutional frameworks across Africa. We also examine the CRPD's intended role for DPOs and consider the manner in which their further empowerment would advance the treaty's objectives. Finally, we consider the relationship between DPOs and national human rights institutions, and articulate areas for collaboration. We conclude that the experiences of African DPOs in translating the CRPD into meaningful social change can be replicated, thereby more effectively actualising the rights of persons with disabilities on the continent.

Shifting the Balance of Power: The Strategic Use of the CRPD by Disabled People’s Organizations in Securing ‘a Seat at the Table’

The article highlights how the strategic use of the Convention on the Rights of Persons with Disabilities (CRPD) by disabled people’s organizations (DPOs) in Iceland has produced a shift in the balance of power with regard to how, and by whom, disability legislation and policy in Iceland is developed. The article draws on a study examining the last stages of a consultative process between representatives of DPOs and policymakers in Iceland leading up to the adoption, in May of 2018, of core disability legislation, Laws pertaining to services for disabled people with long-term support needs (No. 38/2018). It examines the process from the perspective of representatives of DPOs through in-depth interviews and document analysis. This article draws on critical theory and the human rights approach in its analysis, with a particular emphasis on the roadmap to the coproduction of policy provided by the CRPD and the UN CRPD Committee through the issuance of guidance to States Parties to the Convention. It draws attention to the DPOs’ ongoing refocusing of their strategies, and their emphasis on harnessing the rights contained in the CRPD to gain recognition of their right to participation in the coproduction of policy and in changing process norms.

Disabled people's organisations and the disability movement: Perspectives from Burkina Faso.

BackgroundIn Burkina Faso, the disability movement is rather weak, both in terms of funding and staffing – its range does not extend far outside the capital city and is largely dependent on international non-governmental organisations (INGOs). Despite the huge number of grassroots disabled people’s organisations (DPOs), many of these organisations do not function beyond the occasional meeting and celebration of the International Day of Persons with Disabilities. The reasons for this are various, including dependency on external funding (such as from international organisations), lack of access to resources, being dependent on voluntary members, and lack of organisation.ObjectivesThis article looks at the functioning of – and politics governing – DPOs in Burkina Faso, their significance in the lives of people with disabilities and the challenges they encounter.MethodThis article is based on research findings obtained through interviews conducted with people with disabilities, as well as INGOs working with people with disabilities and state authorities in Burkina Faso.ResultsEvidence suggests that the farther people with disabilities are from the capital, the lesser are their chances of being heard and of being involved in decision-making. However, DPOs offer a haven for many, offering people with disabilities solace in meeting other members and finding a sense of belonging in these associations. Others give importance to the role of DPOs in raising awareness and human rights advocacy.ConclusionFinally, the article raises the question as to what the future of DPOs in Burkina Faso might entail.KeywordsBurkina Faso; disability identity; disability movement; disabled people’s organisations; income-generating activities; international non-governmental organisations; socialisation; vie associative; voluntary organisations; urban–rural divide.

People with disabilities as key actors in community-based disaster risk reduction

People with disabilities and their representative organisations are recognised by the Sendai Framework for Disaster Risk Reduction as key contributing stakeholders in disaster resilience-building at the community level. What might be the role and contribution of disabled people’s organisations (DPOs) in realising the right of people with disabilities to be protected in disaster situations? This article reports findings from a research project utilising a multiple case-study research design to examine the implementation of three disability-inclusive disaster preparedness projects led by DPOs in Indonesia. Findings show that the DPOs successfully led disaster preparedness initiatives within their local communities and were instrumental in contributing to collective community-based disaster risk reduction efforts, despite structural barriers that constrained their efforts. The findings suggest pathways to more effectively advance disability-inclusive disaster risk reduction through DPO-led initiatives; giving due consideration to ensuring adequate DPO resources and capacities; and engagement with mainstream stakeholders.

The Washington Group Short Set of Questions on Disability in Disaster Risk Reduction and humanitarian action: Lessons from practice

The Washington Group Short Set of Questions on Disability (WGQ) has been promoted to support inclusive practice within Disaster Risk Reduction (DRR), humanitarian action and more broadly international development. Yet there is limited documentation of learning from use in practice. This article draws together practice and learning from Indonesia, the Philippines and Bangladesh by German Non-Government Organisation Arbeiter-Samariter-Bund (ASB), and local partner Civil Society Organisations (CSOs) and Disabled People's Organisations (DPOs). It aims to break down perceptions related to the complexity of disability inclusion and disability data, and encourage disaster actors to actively use the WGQ. It outlines that the WGQ are a practical tool for DRR and humanitarian action actors to support identification of persons with disabilities and plan accessible initiatives and services which are inclusive to most at-risks populations. However, the article argues that it is important to ensure those using the WGQ are sufficiently trained and supported, the question set is fitting to needs, appropriately framed and implemented, and additional information is collected based on data collection needs to ensure there is sufficient information to support inclusive practice within initiatives. In addition, this paper contributes to the literature on inclusion by spelling out the learning that has come in the journey to develop good practice in collecting and using disability data in DRR and humanitarian actions.

The Determinants of the Development of the Russian Assistive Technologies Market in the Context of the Interaction of Various Groups of Agents

This study identifies the key determinants of the development of the assistive technologies market in Russia and the trends that are expected to determine the dynamics of the Russian market over the next 10-15 years. Based on an analysis of international research experience and data obtained from in-depth interviews with Russian experts in areas associated with assistive technologies and devices (ATD, or technical rehabilitation aids (TRA)) (such as the manufacturers of assistive devices, representatives of the Federal Bureau of Medical and Social Expertise, representatives of disabled people's organizations and policy makers dealing with the issues related to the social support of disabled people), the key determinants of the market have been classified into demographic, economic, political, social, technological, and infrastructural. The study of the determinants and trends is implemented in the context of their impact on the supply and demand for ATD, taking into account the fact that for various groups of the population demands are determined by different needs (from the desire for social inclusion to the desire to be independent) and the fact that supply of different types of assistive devices may be affected by various groups of factors. The interaction of various agents operating in the ATD market in Russia is analyzed within the theoretical framework of Porter's five forces.

Engaging with disability organisations in Uganda

Summary: In Uganda, disabled peoples’ organizations (DPOs), disability unions and the national disability council have the systems and a mandate to respond to the needs of people with disabilities. This short report presents aspects of a survey conducted in 2015 which explored the extent to which people affected by leprosy engage with, and benefit from these generic disability organisations. Structured interviews were conducted with 144 people affected by leprosy, 102 people with other disabilities as well as with 86 service providers and workers in disability organisations. The survey showed evidence of the exclusion of people affected by leprosy from the disabled people’s organizations. The survey identified key reasons for such exclusion, from the perspective of service providers as well as from the perspective of people with leprosy-related and other forms of disability. Suggestions for addressing this concern are noted.

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later. The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disabled People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups. CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

The Functions of Disabled People’s Organisations (DPOs) in Low and Middle-income Countries: A Literature Review

Purpose : The aim of this study was to review peer-reviewed literature on the roles and functions of Disabled Peoples’ Organisations (DPOs) in low and middle-income countries, and their outputs and outcomes for people with disabilities. Method : Online databases were searched without date or language limiters (Medline, CINAHL, Scopus, Embase and Cochrane), using a combination of two key word search strategies. Eleven studies were selected for inclusion in this review on the basis of predetermined inclusion and exclusion criteria. Included studies underwent quality assessment using the Critical Appraisal Skills Programme (CASP) and Downs and Black’s criteria for quality assessment. Data for thematic analysis was then grouped under the broad themes of: participation and factors that facilitate participation; development of partnerships and connections; and self-development and self-help. Results : There was some evidence within the included studies to suggest that DPOs can produce significant, positive outcomes for persons with disability in terms of factors such as employment rates, access to microfinance and bank loans, accessibility of housing, acquisition of orthopaedic devices, involvement in civil society, development of friendships and networks, and participation in training programmes. Although the studies under review largely did not investigate the long-term impact of the reported DPO functions and outputs, some of the short-term outputs may be considered proximal indicators of outcomes such as increased empowerment and wellbeing. Conclusion: The 11 studies in this review suggested that DPOs can be effective in achieving their stated aims of promoting wellbeing, participation and rights of people with disabilities in low and middle- income countries.

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.