Participation of people with disabilities

A central principle of the disability rights movement has been 'nothing about us without us'. This means that no policy or program about or potentially targeting persons with disabilities or the wider community in which they live should be designed, implemented or evaluated without the active engagement and involvement of persons with disabilities themselves at each step of the process. Disability inclusive development practice recognises the contribution that persons with disabilities can make as key stakeholders, not just beneficiaries of development, from the local community level to the international level. Persons with disabilities themselves must play a central and active role in all areas and at all levels in ensuring that their human rights are translated into concrete measures to effectively improve their lives. This reflects the general principle of the UNCRPD ("full and effective participation and inclusion in society"), in Article 3 and general obligation Article 4.3)

Intentionally supporting the genuine participation of persons with disabilities in development can assist in:

  • understanding and addressing the barriers and enablers to accessing development opportunities
  • identifying the most effective programming responses and improving development effectiveness
  • reducing stigma through demonstrating that persons with disabilities are capable, contributing members of their community.

Investing in the leadership and capacity of persons with disabilities helps increase participation and often takes place through support to Organisations of Persons with Disabilities, employing persons with disabilities and building people-to-people links through scholarships and volunteer programs.

Supporting participation at an organisational level: Organisations of Persons with Disabilities (OPDs)

Organisations of Persons with Disabilities (OPDs) are organisations made up of persons with disabilities and which exist to represent the interests of their members. The UNCRPD recognises the role of OPDs and requires governments to consult with them in the development of legislation and policies to implement the UNCRPD and also in all decision-making processes. Some OPDs represent people with all impairment types, while others may focus on a particular impairment type or sectoral issue, or represent geographical areas (local, provincial, national, regional or international). See the Links page for links to OPDs.

Resources below include policy papers and donor guides to supporting OPDs, and reports on capacity building. Case studies and good practice guidance will be added when these become available.

See also: Governance

Humanitarian Advisory Group (2023) Giving Rise to Rights: Barriers & Enablers to Participation of Persons with Disability in PNG

This study is a qualitative enquiry into the issue of disability inclusion, particularly for OPDs seeking to be included in Papua New Guinea (PNG). It presents three main barriers (attitudinal, institutional and communication barriers) impeding the participation of people with disabilities in PNG today. Based on these barriers and enablers, the report identifies 10 opportunities, and provides recommendations for OPDs, government at national and sub-national levels, and other organisations, particularly development actors and service providers.

United Nations Disability Inclusion Strategy (2021) Consulting Persons with Disabilities: Guidelines

These Guidelines provide practical guidance on how to consult people with disabilities and their representative organisations (OPDs) in all disability-specific and general decision-making processes across the UN’s work.

UNICEF (2022) Engaging with Organisations of Persons with Disabilities in humanitarian action

This tipsheet highlights the importance of involving organisations and informal groups of individuals with disabilities in humanitarian efforts, as outlined in the IASC Guidelines on 'Inclusion of Persons with Disabilities in Humanitarian Action'. It offers essential steps for recognizing and initiating collaboration with these Organisations of Persons with Disabilities (OPDs). It also offers guidance to particularly those new to disability inclusion, including those engaged in the implementation of humanitarian responses.

CBM Global Inclusion Advisory Group & Humanitarian Advisory Group (2022) Organisations of Persons with Disabilities: Making a Difference in Vanuatu and Solomon Islands

Consensus is building on the need for greater participation of organisations of persons with disabilities (OPDs) in disaster response and preparedness. Yet, the lack of practical guidelines and information on maximising OPDs’ engagement and impact motivated CBM Global IAG to commission this study. The report draws on two comparative case studies in Vanuatu and Solomon Islands, as well as an extensive desk review of documents. It explores the roles and impact of OPDs in each country and identifies key challenges and enablers constraining and supporting OPDs’ contributions to the disaster preparedness and response sector. A localisation lens was applied to the study to enable the identification of practices that support the empowerment of OPDs as local advocates and disaster preparedness and response actors.

CBM Australia Self-help groups and disability inclusion

CBM’s partners often develop and support self-help groups to work towards empowerment of people with disabilities. This resource highlights how self-help groups are a way of bringing people together at the most local level — for social support, saving money, awareness-raising and advocacy, or something specific like the collective purchase of medicines. It provides some issues about what works with self-help groups that involve people with disabilities.

CBM Australia (2022) “We have a key role now”: Lessons learned from partnerships with organisations of persons with disabilities.

The report celebrates what is working well in our partnership approach and identifies measures to further strengthen our partnership with organisations of persons with disabilities. It is offered as an example of what partnership can mean and as a contribution to the wider efforts of integrating organisations of persons with disabilities into international cooperation. A listening exercise was led by CBM Australia from 2020 to 2021 across 14 countries and 32 organisations to gather feedback on our partnerships with organisations of persons with disabilities, in our field programs, our advisory work, and in our advocacy efforts. We gathered feedback from OPD partners on their experiences of partnership to date, as a starting point to build upon. Read about what we found and what we have committed to.

RDI Network (2020). Authored by CBM-Nossal Partnership for Disability-inclusive Development and Rese Research for all: Making Development Research Inclusive of People with Disabilities.

Research for All is a practical guide for practitioners, researchers and policy makers. The guidance provides case studies, checklists and practical tools to ensure inclusive practices in the research cycle. This is a resource that can be recommended to researchers, as well as development practitioners conducting program evaluations. It can also be used by organisations of people with disabilities to help them advocate for best practice when approached about research opportunities.

CBM (2014) The Future is Inclusive: How to make international development disability-inclusive

This document outlines key facts and figures on the situation of women, men, girls and boys with disabilities living in low income countries and presents the reasons why development and humanitarian actions must be disability-inclusive. There are five chapters which outline key concepts in disability-inclusive development; why inclusion is important for effective development and humanitarian outcomes; key issues which cause barriers in development and provides good practice examples; and concludes with key messages.

CBM Australia (2018) Creating a new business as usual DPO engagement in development

This paper, prepared by CBM Australia under the DFAT-CBM partnership, examines lessons learned on DPO engagement in development programming and humanitarian action from the perspective of the Australian Aid Program. It examines the roles DPOs are currently undertaking in mainstream programs, and provides reflections and recommendations on effective DPO engagement for donors and funding agencies. It also includes more practical considerations and recommendations for program implementers seeking to meaningfully engage with DPOs to support disability inclusive programming. It is supported by 5 case studies which can be found in the case studies section. The paper was originally prepared to support a presentation at the Global Action on Disability (GLAD) Network Meeting 31 January – 2 February 2018, Helsinki, Finland

Disability Rights Fund

This is a grant making body that supports DPOs to advocate on issues around UNCRPD ratification globally. Persons with disabilities are actively involved in its governance and running. It is an example of a mechanism by which donors can efficiently support multiple small projects by DPOs to advocate for their rights in a diverse range of countries.

International Disability Alliance (IDA)

This body was established in 1999 as a network of global and, since 2007, regional DPOs. It aims to promote the effective and full implementation of the UNCRPD worldwide, as well as compliance with the UNCRPD within the UN system, through the active and coordinated involvement of representative organisations of persons with disabilities at the national, regional and international levels. The IDA s provides links to global and regional DPOs as well as position papers on disability rights and information on policy and projects.

Pacific Disability Forum and Australian Pacific Islands Disability Support (2012) Final report- Capacity development for effective and efficient disabled persons organisations in Pacific Island Countries

This report presents the findings of research undertaken by Pacific Disability Forum (the regional umbrella body for Pacific DPOs) and its partner, APIDS, in 2011-2012 on the capacities and journey of Pacific DPOs, to contribute to ongoing capacity development processes of Pacific DPOs. Provides a helpful example of a participatory process, where DPOs are able to identify their own capacities and opportunities for future growth.

Humanity & Inclusion (2011) Support to organisations representative of persons with disabilities

This Policy Paper is based on the practice and extensive experience acquired by Handicap International in their work providing support to DPOs. It provides principles, rationale for support to DPOs, and a range of possible intervention methods. These include capacity development; promoting changes to attitudes practices and policies; monitoring; and supporting the empowerment of individuals with disabilities. It also includes brief case study examples.

Wapling L and Downie B (2011) Beyond charity: A donor's guide to inclusion. Disability funding in the era of the UN Convention on the Rights of Persons with Disabilities

This resource provides guidance to donors on promoting disability rights through international cooperation from a human rights perspective, based on the UNCRPD. It outlines inclusive funding in action, and practical mechanisms to support representative organisations of persons with disabilities or disabled persons organisations (DPOs).

The report celebrates what is working well in our partnership approach and identifies measures to further strengthen our partnership with Organisations of Persons with Disabilities. It is offered as an example of what partnership can mean and as a contribution to the wider efforts of integrating organisations of persons with disabilities into international cooperation. We gathered feedback from OPD partners on their experiences of partnership to date, as a starting point to build upon. Read about what we found and what we have committed to.

Disabled People’s Organisations (DPOs) have successfully engaged in five water, sanitation and hygiene (WASH) projects being implemented by World Vision Australia and WaterAid through the Australian Aid-funded Civil Society WASH Fund. Working in very different contexts, each project was able to engage with local DPOs to support disability inclusion within WASH programming, across the program cycle. The roles that the DPOs played varied according to interest, capacity, geographical proximity and scope of the program. Engagement between DPOs and civil society organisations (CSOs) has not only strengthened project outcomes, but has brought benefits for all partners for achieving disability inclusion, and for broader capacity building and networking.

Many donors and international development agencies are familiar with funding DPOs; however engaging DPOs to help design, implement, monitor and evaluate programs and portfolios of programs, especially within mainstream development programs, is less common. This paper provides some perspectives from the Australian Aid program and Australian development sector more broadly. The paper seeks to answer the following questions: • What has DFAT done to encourage and enable DPO engagement in development programs, which could be replicated by other donors and funders? • What roles are DPOs fulfilling in order to help make programs more disability inclusive? • What issues should program managers and implementers consider and address to maximise effective and meaningful DPO engagement in programs? The paper addresses the three questions sequentially. It is supported by case studies that illustrate the roles DPOs can undertake in programs, as well as more detailed lessons arising from these.

A range of disabled people’s organisations (DPOs) have been involved in short-term disability inclusive development capacity development visits to Australian Government Department of Foreign Affairs and Trade (DFAT) Posts, as co-facilitators, speakers and advisors. Involving DPOs in disability inclusion trainings and meetings: supports the ‘nothing about us without us’ principle; upholds DFAT’s own strategy principles; ensures that training and advice is contextually relevant; and contributes to establishing and strengthening relationships between DPOs, DFAT, governments and implementing partners. DPO involvement in visits also helps to build DPO capacity and create momentum for DFAT and partners to identify opportunities to support DPOs or involve them in their programs.

DFAT recruited a disability advisor to support implementing partners develop and implement disability inclusion strategies within the health program in Timor-Leste. By stipulating that these services must be provided in partnership with a national DPO, DFAT was able to ensure DPOs were strongly engaged, but also supported, in providing advisory services. Through this engagement, the DPO developed new relationships with government and non-government partners and increased its capacity to provide advice on disability inclusive health.

After successfully working together to deliver awareness raising activities regarding disability inclusive skills development opportunities in communities across Vanuatu, the Vanuatu Skills Partnership and Vanuatu Disability Promotion and Advocacy Association (VDPA) established a formal relationship. Through this partnership, the Vanuatu Skills Partnership and Disabled People’s Organisation (DPO) support each other towards shared goals, by providing relevant technical advice and bi-directional capacity development support. Recognising the limited funding opportunities available to Pacific DPOs, Vanuatu Skills Partnership also funds an appropriate proportion of VDPA’s institutional costs. This joint work has resulted in increasing demand amongst people with disabilities for disability inclusive skills development, and improved supply of disability inclusive post-school education and training. The Vanuatu Skills Partnership is a joint investment between the Governments of Australia a

The Australia Indonesia Partnership for Justice has involved disability inclusion as a key strategy. This has been progressed through a range of approaches, including the participation of DPOs in organisational capacity building together with other CSOs, and core funding to organisations to strengthen their approaches. Outcomes, lessons and recommendations have been identified. Mainstream participation of key people with disability as both agents of change and beneficiaries of change was identified as a key enabler of success.

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Picture of representatives from Fusi Alofa Association (Tuvalu), Te Toa Matoa (Kiribati) and from Nauru DPA at a conference wearing headphones to listen to the translation of a speech.

Photo: Soloveni Vitoso, 2013

The Pacific Disability Conference, held every two years, was held in New Caledonia 2013. At these conferences, OPDs from around the Pacific and other interested stakeholders meet to discuss progress on disability inclusion, learn from each other’s experiences and to plan future initiatives.Here, representatives from Fusi Alofa Association (Tuvalu), Te Toa Matoa (Kiribati) and Nauru DPA are listening to the opening address of the PDF General Forum from the New Caledonian Government representatives. Translation was provided from French to English and into local sign languages. Copyright: Pacific Disability Forum