Stephen Thompson,3 Brigitte Rohwerder,4 Josephine Njungi,5 Oluwatosin Adekeye,6 Abdur Rakib7 and Sazzd Kabir8
Abstract Participatory research, which is built on the guiding philosophy of enabling and empowering people to play an active and influential role in research that affects their lives, is an approach which can contribute to realising meaningful inclusion. Drawing on experiences gained through developing and employing participatory research methods under the Disability Inclusive Development Inclusive Futures programme, this article explores the methodological opportunities, challenges, and nuances of such an approach. It offers reflections based on the experience of undertaking research focused on inclusive education in Nigeria and Kenya, inclusive livelihoods in Bangladesh, and exploring the impact of the Covid-19 pandemic on people with disabilities across multiple countries. We analyse both successful practices from these participatory research projects and also highlight those that could have been more collaborative and inclusive. Finally, we look forward, offering reflections and recommendations to guide others who are interested in designing and delivering disability-inclusive participatory research.
Keywords participatory methods, disability inclusion, qualitative research, peer researchers, reflective practice, methodological adaptations, participatory analysis, power, positionality, research design.
The paucity of evidence about the lived experience of people with disabilities has been a persistent barrier to improving their inclusion in society. The UN Convention on the Rights of Persons with Disabilities (CRPD) highlights the importance of data collection to enable the formulation and implementation of policies to protect and promote the rights of people with disabilities (UN 2006).9 The World Report on Disability states that while the amount of disability-focused data continues to increase, there remains an urgent need to improve the evidence base to better plan future action (WHO 2011). Quantitative studies are of vital importance for understanding and improving the experiences of people with disabilities, and much of the discourse around data relating to disability focuses on statistics. In recent years, there has been a marked increase in the collection of quantitative statistics disaggregated by disability, using internationally comparable methods (UN 2024). While the increase in disability-focused quantitative data should be celebrated, less is reported about the progress of its counterpart – qualitative data – with particularly limited attention being paid to the value and potential of qualitative participatory research. Despite receiving less consideration both in the literature and the policy space, the value of qualitative disability research must not be underestimated. This is emphasised by the World Report:
To understand the lived experiences of people with disabilities, more qualitative research is required. (WHO 2011: 46)
More evidence is needed to show how people with disabilities experience disadvantage and exclusion, and to highlight their needs or concerns, especially in low- and middle-income countries. This can be achieved through participatory research methods which ask them directly and so reveal their perspectives, and if possible, provide opportunities for comparison with others. Participatory methods which amplify the voices of people with disabilities can help others (such as policymakers and service providers) to understand the lives of people with disabilities better and with more depth and nuance.
A focus group discussion with children with disabilities
Photo credit Josephine Njungi, Research PLUS Africa
A core focus of the Disability Inclusive Development Inclusive Futures (hereafter Inclusive Futures) programme has been to address the evidence gaps in knowledge about the experiences and perceptions of people with disabilities. Within the Inclusive Futures programme, researchers from the Institute of Development Studies (IDS) had a specific role to develop and champion participatory research to improve the qualitative data exploring the lives of people with disabilities. This has brought many successes but also highlighted some challenges. Reflective practice is an important aspect of participatory research, allowing for engagement in a process of continuous learning (IDS n.d.). By reflecting on these experiences in this article, we seek to outline methodological opportunities, challenges, and nuances of disability-inclusive participatory research approaches. The objective is to open up debate about future qualitative disability research, allowing for an improved participant informed, disability-focused evidence base, ultimately leading to action to realise more inclusive societies.
We acknowledge that participatory research can be both qualitative and quantitative in nature. (The focus of this article is specifically qualitative participatory research, but for more details on quantitative participatory research see Holland 2013.) We also recognise that the term ‘participation’ is used in many other related senses, such as in development programming, as well as in advocacy and activism spaces. This is particularly significant in the disability movement. For example, participation restrictions are included as a component of the World Health Organization model of disablement forming the International Classification of Functioning, Disability and Health (ICF), along with impairments and activity limitations (WHO 2002). In addition, meaningful participation is often regarded more broadly as a societal goal within the disability movement, both for people with disabilities and Organisations of Persons with Disabilities (OPDs) (IDA 2022). While there is clear overlap between these uses of the term participation, and relevance between understandings, we focus on participatory research, which seeks to generate knowledge for action by emphasising a ‘bottom-up’ approach, by focusing on the priorities and perspectives of the participants (Cornwall and Jewkes 1995).
Participatory research includes a range of activities that enable people to play an active and influential part in decisions which affect their lives (IDS n.d.). Interventions that are generated through participatory research can reflect local realities and can lead to deeper, broader, and longer-lasting social change. Such approaches can address power differentials, be less extractive, and deliver research with social relevance, facilitating transformative action (ibid.). Participatory research is increasingly used by researchers focusing on disability, as it has the potential to ensure that people with disabilities have an active role in identifying research priorities, as well as in the research processes themselves (Corcuff et al. 2025).
Researcher accountability to fairly represent the experiences of participants is an important aspect of qualitative research integrity, but particularly so for research about disability (Shakespeare 1996). The CRPD calls for the full and effective participation and inclusion of people with disabilities in society on an equal basis with others (UN 2006). This should logically include activities such as research. Research that is done ‘on’ disability/people with disabilities, without facilitating their participation in a meaningful way, falls short of this expectation and may (albeit unwittingly) contribute to their oppression. Disability-inclusive participatory research allows people with disabilities to have a say about their experiences and be involved in processes to improve the situation. Such approaches can transfer power from the researcher to the participants, ensuring that they become active partners in the research process (Kuper et al. 2021). However, research dilemmas relating to power are not automatically addressed by just selecting a participatory approach. Care must be taken by researchers to avoid further marginalisation and/or oppression of some people with disabilities (Danieli and Woodhams 2005).
Inclusive research (defined here as research that deliberately and systematically brings marginalised groups into its processes) can and should be practised by default in participatory research (Wickenden and Lopez Franco 2021). To be inclusive, research methods must be selected to facilitate participation regardless of impairment or any intersecting factor. Experiences of disability are not homogenous, so methods and materials used must recognise and adapt to the diversity of participants and their different support needs (ibid.). Certain groups are commonly marginalised, such as children with disabilities (Stafford 2017), people with impairments other than physical and sensory (Meyers, McCloskey and Petri 2023), and people with intellectual/learning disabilities in particular (Robinson, Fisher and Strike 2014). Depending on contexts, participatory researchers may need to use different approaches, adaptations, and adjustments for their research practice to ensure that all participants are meaningfully included.
With this framing in mind, this article seeks to reflect on experiences of undertaking disability-inclusive participatory research as part of the Inclusive Futures programme, aiming to strengthen future research across a range of sectoral foci. Reflecting on the experience, we explore three main aspects of this work: including participants with disabilities in participatory research, working with researchers with disabilities, and reflecting on positionality and power. We recognise that these three aspects interlink and intersect. This article does not explicitly explore the ethics of disability-inclusive participatory research in depth, but the authors recognise the importance of specific consideration of these issues in addition to the usual ethical considerations, as it is recognised that there are particular risks and mitigations needed in disability research.
With this framing in mind, this article seeks to reflect on experiences of undertaking disability-inclusive participatory research as part of the Inclusive Futures programme, aiming to strengthen future research across a range of sectoral foci. Reflecting on the experience, we explore three main aspects of this work: including participants with disabilities in participatory research, working with researchers with disabilities, and reflecting on positionality and power. We recognise that these three aspects interlink and intersect. This article does not explicitly explore the ethics of disability-inclusive participatory research in depth, but the authors recognise the importance of specific consideration of these issues in addition to the usual ethical considerations, as it is recognised that there are particular risks and mitigations needed in disability research.
Under the Inclusive Futures programme, IDS researchers worked with various partners to trial and implement participatory research focused on the themes of inclusive education, livelihoods, and the impact of the Covid-19 pandemic on people with disabilities. Here, we highlight themes that emerged from across these experiences.
Our objective was to develop a portfolio of research that enabled people with disabilities to play an active and influential role in gathering and generating evidence about their experiences. Where possible, participants were asked directly about what was important to them. This approach recognises them as experts in their own lives, which can both generate evidence and be empowering for the participants (Wickenden, Njungi and Rohwerder 2023). Participant voice was the central focus of research on livelihoods in Bangladesh (Thompson and Rakib 2025). Such an approach was found to produce rich and highly personalised accounts of participant experiences. Carers, family members, and non-governmental organisations (NGOs)/OPDs also contributed to the data, but this was kept deliberately separate from the data produced by the participants (ibid.).
In undertaking research to explore the impact of the pandemic on people with disabilities across multiple low-income contexts, narrative interviews were purposely selected as an accessible research method, regardless of education level, language competence, or the preferred communication mode of participants (Wickenden et al. 2021). This ‘teller-focused’ method gave the participants the opportunity to reveal what matters to them, rather than the researcher influencing responses.
Inclusive methodological adaptations were used to enable people from the most marginalised impairment groups to participate. For research on livelihoods in Bangladesh, adaptations were included such as using arts-based and creative approaches, careful pacing, and repetition, as well as multi-modal approaches, visual supports, and avoiding overdependence on verbal tasks (Shaw and Wickenden 2022; Wickenden and Thompson 2023). The skills of participants and their support needs were not formally assessed but described in advance by the local partner NGOs and OPDs, who knew the participants well. Approaches were then tailored accordingly. Some participants needed communication support, such as sign or tactile language, or the use of pictures, symbols, and gestures to facilitate their participation. As an example of how these needs were accommodated, one exercise involved participants using plasticine to show by way of a physical representation what they felt had changed since they had received skills training (Wickenden and Thompson 2023).10
Such methodological adaptations must be complemented by positive attitudes towards people with disabilities (Shaw and Wickenden 2024). Extra time to ensure that everyone can participate at their own pace is important (Wickenden et al. 2021). Where the participatory research was going to involve children with disabilities, in addition to the ethical considerations, the research activities were adapted to make them age appropriate as well as accessible/inclusive (Wickenden, Rohwerder and Njungi 2022). Flexible play-based visually focused activities11 were developed for the research in Kenya, which encouraged the children to speak openly about what they liked/disliked at school, and what could be improved (Wickenden, Njungi and Rohwerder 2023).
The activities were designed to allow the participants with disabilities themselves to give their opinion, as they are experts on their own lives, and may have differing opinions from their parents, guardians, or teachers (Wickenden 2024). People who are commonly marginalised often lack confidence and may not be used to speaking out, so methods were developed and adapted, to build trust and participant self-confidence (Shaw and Wickenden 2022). In addition, research planning must consider that when working with groups who are accustomed to being excluded, their responses may include courtesy bias where they overemphasise positive aspects of their experiences or downplay negative aspects, so as to not upset anyone (Wickenden et al. 2023).
In recognising that people with disabilities face many barriers to education, particularly in low-income contexts, methodological adaptations need to be inclusive of people with no or limited literacy. Here, alternative forms of communication (whether tactile, art-based, or movement based) can improve inclusivity (Shaw and Wickenden 2022). For research exploring inclusive education in Nigeria, a Likert scale made up of a range of faces with different emotions was used so that children with disabilities could express a range of emotions about different questions. The faces were different colours (green for ‘I like’, red for ‘I dislike’). This multi-modal approach was designed to improve inclusivity and help participants with low literacy (Wickenden et al. 2023).
Participatory research involves both data collection and analysis. This can happen at different levels, involving the participants themselves, or by involving partners, OPDs, or family members to add their perspectives and provide further context (Wickenden, Njungi and Rohwerder 2023; Thompson and Rohwerder 2023). When analysing the pandemic-focused data, a series of online participant events was held with the support of OPDs. These events were made accessible (e.g. through provision of sign language interpreters, etc.) but also inclusive, with OPDs providing support and space for participants to engage. In addition, the cost of the data used to connect to the events was covered, so that there was less financial burden on the participants. Extra time was factored into the events to ensure that everyone could contribute. Geographical-related factors, including language and time zones, were also considered. These events were important to facilitate participant input on analysis of the data (Thompson and Rohwerder 2023).
Several of the Inclusive Futures research interventions led by IDS researchers involved recruiting local researchers. Where possible, people with disabilities were encouraged to apply for the roles. In Kenya, eight people with disabilities worked as peer researchers. This was done through engaging with both Inclusive Futures NGO partners and OPDs.
Candidates were not expected to have high research skill capabilities. Instead, those with experience of community facilitation, awareness of inclusion/disability rights, and a willingness to learn new skills were prioritised. The peer researchers received training and then facilitated focus groups and in‑depth interviews with other people with disabilities, as well as parents and teachers, to understand their perspectives on early childhood development and inclusive education, with the help of an experienced local research consultant (Wickenden, Rohwerder and Njungi 2024). As the peer researchers both had disabilities and spoke the same languages/dialects as the participants, this helped to develop trust, strengthening the research process (Wickenden et al. 2022). As one peer researcher stated,
Parents were motivated seeing me, a disabled person, interviewing them.
(Wickenden, Rohwerder and Njungi 2024: 9)
During the research process, the peer researchers were invited to reflect on their experiences, both individually and as a group. Being involved boosted their self-esteem and self-confidence, exemplified by a peer researcher who stated,
I am a role model.
(ibid.: 10)
For many, their knowledge of inclusion was broadened, in addition to their research skills improving (Wickenden et al. 2024). The process was found to be positive by researchers and participants, as well as parents and teachers (Wickenden 2024). Peer researchers said the following about being involved:
I have learned how to do qualitative data collection and analysis using FGD [focus group discussion] method.
(Wickenden et al. 2024: 9)
I am knowledgeable in [the] research world.
(ibid.)
Engaging with peer researchers provided epistemological depth to the research that would not have been possible without their involvement:
This methodology enables and promotes a shift of perspective and power within qualitative research relationships, in the type of knowledge that is valued, and in who benefits from the process.
(ibid.: 12)
However, this process was not without challenges, particularly with the recruitment of peer researchers. While the peer researcher team was diverse, they all had acquired physical or visual impairments. No applications were received from people with other impairments. The recruitment process unwittingly replicated challenges relating to the ‘hierarchy of impairment’ where certain groups are more marginalised than others (Deal 2003). This perhaps could have been overcome with a longer and more proactive approach to recruitment (Wickenden et al. 2024).
Recruiting local researchers with disabilities was also found to be a challenge for the pandemic-focused work. Here, narrative interviews were selected as the methodology – an approach that was deemed to require delivery by experienced researchers (Wickenden et al. 2021). Despite undertaking positive action to recruit experienced researchers with disabilities (e.g. circulating job adverts to partners and OPDs), it was found to be harder to recruit suitably skilled researchers with disabilities. The reasons for this are partially rooted in the systemic and historic barriers to education that people with disabilities face, resulting in fewer people with disabilities becoming professional researchers, especially in low- and middle-income countries. To address this challenge in the longer term, more resources and skills training could be provided to ensure that researchers with disabilities (as well as OPDs) get the opportunity to be involved. In addition, over time, as access to education improves, more people with disabilities will develop research skills and careers.
Reflecting on both positionality and power are essential features of participatory research, but particularly when working with habitually marginalised groups. Such reflections may influence how research is undertaken but also offer essential methodological reflections to strengthen future participatory research. It is important to explore the personal identities of researchers and what influence these may have on the research being undertaken.
While recognising that both individual identities and related underlying power dynamics exist, such disparities can be ‘flattened’ by modelling respect, affirmation, and appreciation of everyone’s contributions (Wickenden 2024). Through careful reflection and action to affirm equality and respect, it is possible to build strong and positive relationships with groups of people across contexts and cultures (Shaw and Wickenden 2022).
In all of the Inclusive Futures studies, OPDs played an important role in planning and delivering the participatory research. They helped to balance power differentials, address contextual nuance, and in practical terms acted as gatekeepers, offering additional verification that participating in the research was in the participants’ best interests. For livelihood-focused research in Bangladesh, OPDs provided essential advice, support, and guidance about working with the most marginalised participants, including people with deafblindness (Shaw and Wickenden 2022; Wickenden and Thompson 2023). For the research exploring the impact of the pandemic, OPDs recruited participants and provided additional advice on access and communication needs. Some of the research activities took place in OPD offices, which were regarded by the participants as safe spaces where they would be supported by people they knew – an important aspect to reduce power differentials between researchers and participants (Thompson and Rohwerder 2023).
4 What did we learn?
By reflecting on what we learned from undertaking research as part of the Inclusive Futures programme, we now look forward, offering suggestions for others working on designing and delivering disability-inclusive participatory research.
The impact of power and privilege on the lives of people with disabilities generally, and also more specifically within research, has long been debated (Oliver 1992; Stone and Priestley 1996). Referring specifically to research on disability, Oliver (1992: 110) argues that research is ‘an activity carried out by those who have power upon those who do not’. Swartz (2009) warns against disablist research, which is built on a process of ‘othering’, where the voices of people with disabilities are excluded and their bodies become objects of interest within research, which is comparable to how colonised people are impacted by racism and colonialism.
Social relations connected to disability need to be recognised and addressed in disability-focused research, as disability cannot be abstracted from the social world which produces it (Oliver 1992). To achieve this, Oliver (1992: 101) calls for the development of an ‘emancipatory research paradigm’. Researchers who themselves have not experienced the oppression that they are researching must carefully consider if they are truly contributing to addressing oppression or potentially adding to it. To achieve this, a shift in social relations is required, where,
Researchers have to learn how to put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose. The task for emancipatory research is not, as is sometimes implied, to help the researched to understand themselves better, but to develop its own understanding of the lived experiences of these very subjects.
(Oliver 1992: 111)
Stone and Priestley (1996) also urge non-disabled researchers involved in disability research to consider the inherent power differentials that exist between researcher and participants, which are influenced (and accentuated) by the unequal power relationships that exist between people with and without disabilities in wider society. Caution is needed:
The language of facilitation, participation and emancipation can and does obfuscate disabling power relations.
(Baton 2005: 325)
As such, participatory researchers must consider who is really benefiting from their research. As highlighted by Shakespeare (1996), disability researchers must question whether they are personally profiting from the collective endeavours of people with disabilities. As detailed in Section 3, all of the participatory research undertaken as part of the Inclusive Futures programme included reflection on positionality and power differentials (e.g. Wickenden, Njungi and Rohwerder 2023: 2242). However, perhaps deeper and more nuanced reflections on power structures and approaches to address them would have furthered understandings of the contribution of the disability-inclusive participatory research delivered.
All of the authors of the current article have experience of working on disability issues, recognise and campaign for the rights of people with disabilities, and consider themselves advocates for, and allies with, the disability movement. However, the fact that none of the authors of this current article, nor of any of the authors of the Inclusive Futures participatory research outputs drawn on here, identify as having disabilities, is perhaps an indication of how much work still needs to be done. This is not because of a belief that only researchers with disabilities can contribute to disability research, but rather because it would suggest that we have fallen short of creating or contributing to an inclusive research culture in which non-disabled and disabled researchers can work together on these issues to share, support, and act as critical friends to one another (Barton 2005).
Supporting the skills development of researchers is recognised as being necessary to build a thriving, inclusive research system (Thompson 2025). However, in many postcolonial contexts, barriers to education and a subsequent career in research is linked not only to disability status but also to race and/or indigenous status (Swartz 2009). If a research environment is to be developed that facilitates emancipatory disability research, such differentials must be taken into account and addressed going forward.
Supporting the skills development of researchers is recognised as being necessary to build a thriving, inclusive research system (Thompson 2025). However, in many postcolonial contexts, barriers to education and a subsequent career in research is linked not only to disability status but also to race and/or indigenous status (Swartz 2009). If a research environment is to be developed that facilitates emancipatory disability research, such differentials must be taken into account and addressed going forward.
For future disability-inclusive development programmes that involve participatory methods, more thought needs to be given with regard to the research skills gap for researchers with disabilities, and what the role and contribution of established participatory researchers working on disability should be to help address it. While doing so, intersecting inequities related to race/indigeneity, as well as disability and other factors must be considered, particularly if working to develop disability research capacity in low-income and/or postcolonial contexts (ibid.).
In addition to who is involved in the research, we also need to think about where the research outputs are published, how accessible they are, and how they are disseminated. While the majority of the Inclusive Futures participatory methods research outputs were published in open access formats, some were not, which poses challenges in terms of who can access them. In addition, the details of engagement with OPDs relating to research dissemination, uptake, and engagement were limited in the research outputs. This, combined with more nuanced reflections on power differentials within the research detailed above could open up new debates around how we can strengthen the disability-focused research environment going forward.
When considering the inclusion of people with disabilities both in research and in general, it must be acknowledged that opportunities to participate are not equal, and some people with disabilities are more included than others (Deal 2003). Political, social, and cultural context intersects with impairment in defining who are the most marginalised groups (Meyers et al. 2023). While we aimed for the participatory research within the Inclusive Futures programme to be purposefully inclusive from the outset, we recognise that some of our research failed to include the most marginalised people with disabilities. For example, most of the participants involved in the impact of pandemic research were literate and financially secure (Wickenden et al. 2021; Thompson and Rohwerder 2023). This does not mean that those participants included had not experienced marginalisation, but that there were likely to be others who were more marginalised and whose voices we have not heard.
To address this concern in Bangladesh during the livelihood-focused research, we took an intersectional approach and purposefully aimed to include the most marginalised groups (people with high support needs and women with disabilities) as identified by OPDs and NGO partners (Shaw and Wickenden 2022; Thompson and Rakib 2025).
To include people who are commonly marginalised requires careful thought about accessibility and support needs. OPDs, NGOs, and family members can provide a vital bridge between researcher and participant, advising on methods and also ethical considerations. Research with the most marginalised groups may require more budget (to pay for any required assistance, adaptations, or accessibility costs) and more time than research with other groups. This can be challenging, but if understandings of value for money and cost effectiveness include an element of equity, additional costs of including these groups can be justified as human rights apply to all. In addition, it is important that donors and funders engage with discussions on including the most marginalised groups in research.
Writing on who development endeavours should prioritise, Chambers (1983) called for us to ‘put the last first’. When researching disability, it must be considered who the ‘last’ are and what strategies can ensure that they are the first to be included within research and subsequent interventions. We argue that participatory approaches are highly suitable for disability research, allowing for an epistemological shift, where different types of practice and knowledge are valued. Through various practices (including gathering verbatim stories, generating visual materials such as art, drawing, modelling), participants with a range of impairments, preferred communication modes, and education levels could be included. For such approaches to succeed, trust must be built between researchers and participants through the development of collaboration and shared decision-making (Corcuff et al. 2025). In disability-focused research, OPDs must be included in this process. Further methodological reflection is needed to explore the full potential of participatory research methods and show how engaging people with disabilities in their use can contribute to expanding our understanding of ways of knowing about disability-inclusive development.
In this article, we have shown that participatory approaches hold great potential for both researching and modelling disability inclusion. The evidence produced through participatory research methods can contribute to realising the meaningful inclusion of people with disabilities in society. Inclusive methodological adaptations can be made to a range of participatory methods to ensure that they are accessible and meet the needs of the participants, including those who have high support needs. This group, along with others (who due to intersecting political, social, and cultural contextual factors such as gender, are the most marginalised), are least likely to be included in research. Researchers and their partners must take positive actions to include the most marginalised people and groups in research – putting the last first wherever possible.
Reflective practice is a central aspect of participatory research. For participatory disability research, reflections on positionality and power are essential. It must be recognised that people with disabilities are subject to ableist oppression in wider society, and that research does not happen in a vacuum. Engaging with researchers with disabilities can narrow power differentials, and develop trust between researchers and participants, as well as developing the skills of the researchers. In low-income contexts, the pool of skilled researchers with disabilities may not be as deep. If this scenario arises, researchers (and particularly those who do not have disabilities) should consider whether there is anything they can do to support local researchers with disabilities or OPDs with an interest in research to further develop their research capabilities, strengthening the disability-focused research environment.
Participatory researchers who do not have disabilities themselves must be allies to people with disabilities, valuing their knowledge, skills, and lived experiences, facilitating research processes where people with disabilities can contribute to the evidence that shapes outcomes that will benefit them and others. Allies within research processes can play important roles, ensuring the inclusion of people with disabilities in research, creating an environment in which their voices are heard and valued, and informing action leading to positive change.
We hope this article will provide useful insights for others who are already undertaking disability-inclusive participatory research, as well as for anyone who is planning to do so in the future. We openly invite engagement with us on any of the reflections and ideas shared in this article. Our research was undertaken with the goal of being inclusive and producing evidence that is both actionable and useful, but we are open to reflection, learning, and improvement. We remain committed to working towards full and meaningful inclusion of people with disabilities and believe that disability-inclusive participatory research helps move us closer to that goal.
1 This issue of the IDS Bulletin was supported by UK aid under its flagship Disability Inclusive Development (DID) programme. The DID programme was delivered through two separate programmes. The eight-year consortium intervention, Disability Inclusive Development Inclusive Futures (Inclusive Futures) programme, led by Sightsavers and the International Disability Alliance, ran from August 2018 to March 2026. It has reached more than 19 million people and generated almost 300 learning and evidence resources to inform policy and practice on disability-inclusive development. The evaluation programme, the Programme for Evidence to Inform Disability Action (PENDA), was delivered by the London School of Hygiene & Tropical Medicine. The opinions expressed are the authors’ own and do not reflect the views of the funders.
2 We would like to thank Mary Wickenden (Principal Investigator), Jackie Shaw (Research Fellow), and Caroline Martin (Project Manager), who were also part of the team at the Institute of Development Studies (IDS) working on the Disability Inclusive Development Inclusive Futures programme. Thanks as well to the Inclusive Futures non-governmental organisation (NGO) and Organisations of Persons with Disabilities (OPD) partners. In particular, we would like to acknowledge the participants who have worked with us during the programme, as well as the peer researchers, data collectors, and consultants.
3 Stephen Thompson, Research Fellow, Institute of Development Studies, UK.
4 Brigitte Rohwerder, Researcher, Institute of Development Studies, UK.
5 Josephine Njungi, Director, Strategy and Planning, Research PLUS Africa, Kenya.
6 Oluwatosin Adekeye, Deputy Director Clinical Psychology, Ahmadu Bello University Teaching Hospital, Shika Zaria, Kaduna State, Nigeria.
7 Abdur Rakib, Senior Partnerships Manager, International Rescue Committee (IRC), Bangladesh (formerly from ADD International).
8 Sazzd Kabir, Development Manager, Centre for Disability in Development (CDD), Bangladesh.
9 See CRPD Article 31 – Statistics and Data Collection (UN 2006).
10 See Wickenden and Thompson (2023) for more detail on the specific inclusive methodological adaptations that were used.
11 Details of the flexible play-based visually focused activities and research protocols are available from the authors upon reasonable request. See IDS (n.d.) for related ideas, tools, and methodologies.
Barton, L. (2005) ‘Emancipatory Research and Disabled People: Some Observations and Questions’, Educational Review 57.3: 317–27, DOI: 10.1080/00131910500149325
Chambers, R. (1983) Rural Development: Putting the Last First, Harlow: Prentice Hall
Corcuff, M. et al. (2025) ‘A Mapping Review of Good Practices of Participatory Research for an Impactful Collaboration in Disabilities Studies’, Disability and Rehabilitation 1–15, DOI: 10.1080/09638288.2025.2536181
Cornwall, A. and Jewkes, R. (1995) ‘What is Participatory Research?’, Social Science and Medicine 41.12: 1667–76, DOI: 10.1016/0277-9536(95)00127-S
Danieli, A. and Woodhams, C. (2005) ‘Emancipatory Research Methodology and Disability: A Critique’, International Journal of Social Research Methodology 8.4: 281–96, DOI: 10.1080/1364557042000232853
Deal, M. (2003) ‘Disabled People’s Attitudes Toward Other Impairment Groups: A Hierarchy of Impairments’, Disability & Society 18.7: 897–910, DOI: 10.1080/0968759032000127317
Felder, F. (2025) ‘Bridging the Gap Between Knowledge and Justice: Epistemic Challenges in Participatory Disability Research’, Theory and Research in Education 23.3: 268–83, DOI: 10.1177/14778785251379066
Holland, J. (ed.) (2013) Who Counts? The Power of Participatory Statistics, Rugby: Practical Action Publishing
IDA (2022) Not Just Ticking the Disability Box? Meaningful OPD Participation and the Risk of Tokenism, Geneva: International Disability Alliance
IDS (n.d.) Participatory Methods (accessed 25 November 2025)
Kuper, H. et al. (2021) ‘Participatory Research in Disability in Lowand Middle-Income Countries: What Have We Learnt and What Should We Do?’, Scandinavian Journal of Disability Research 23.1: 328–37
Meyers, S.; McCloskey, M. and Petri, G. (eds) (2023) The Routledge International Handbook of Disability Human Rights Hierarchies, Abingdon: Taylor & Francis
Oliver, M. (1992) ‘Changing the Social Relations of Research Production?’, Disability, Handicap & Society 7.2: 101–14, DOI: 10.1080/02674649266780141
Robinson, S.; Fisher, K.R. and Strike, R. (2014) ‘Participatory and Inclusive Approaches to Disability Program Evaluation’, Australian Social Work 67.4: 495–508, DOI: 10.1080/0312407X.2014.902979
Shakespeare, T. (1996) ‘Rules of Engagement: Doing Disability Research’, Disability & Society 11.1: 115–21, DOI: 1080/09687599650023380
Shaw, J. and Wickenden, M. (2024) ‘ “I am Pleased to Share my Thoughts and Opinions” – Including Marginalised People with Disabilities in Inclusive Qualitative Research in Bangladesh Through Creative, Relational Methodologies’, International Journal of Qualitative Methods 23, DOI: 10.1177/16094069241257948
Shaw, J. and Wickenden, M. (2022) Insights from Inclusive Participatory Fieldwork with Learners with Deafblindness and Other Marginalised Impairments, Brighton: Institute of Development Studies, DOI: 10.19088/IDS.2023.014 (accessed 15 January 2026)
Stafford, L. (2017) ‘ “What About My Voice”: Emancipating the Voices of Children with Disabilities through Participant-Centred Methods’, Children’s Geographies 15.5: 600–13, DOI: 10.1080/14733285.2017.1295134
Stone, E. and Priestley, M. (1996) ‘Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers’, The British Journal of Sociology 47.4: 699–716
Swartz, L. (2009) ‘Building Disability Research Capacity in Low-Income Contexts: Possibilities and Challenges’, in M. Maclachlan and L. Swartz (eds), Disability & International Development: Towards Inclusive Global Health, New York NY: Springer, DOI: 10.1007/978-0-387-93840-0_6
Thompson, S. (2025) Skills Development of Early Career Researchers Involved in Disability-Inclusive Arts and Humanities Research, Brighton: Institute of Development Studies, DOI: 10.19088/IDS.2025.020 (accessed 15 January 2026)
Thompson, S. and Rakib, A. (2025) ‘Disability and Mobility in Bangladesh – A Participatory and Inclusive Qualitative Study’, Disability and International Development 3: 4–14
Thompson, S. and Rohwerder, B. (2023) ‘Spaces of Exclusion and Neglect: The Impact of COVID-19 on People with Disabilities in Bangladesh, Kenya, Nepal, Nigeria, and Uganda’, Space and Culture 26.3: 451–67
UN (2024) Disability and Development Report 2024: Accelerating the Realization of the Sustainable Development Goals by, for and with Persons with Disabilities, New York NY: United Nations
UN (2006) Convention on the Rights of Persons with Disabilities, New York NY: United Nations
WHO (2011) World Report on Disability, Geneva: World Health Organization
WHO (2002) Towards a Common Language for Functioning, Disability and Health: ICF, Geneva: World Health Organization
Wickenden, M. (2024) ‘Using Participatory and Inclusive Methodologies to Explore Inclusive Education in Africa’, African Journal of Disability 13: e1–e9, DOI: 10.4102/ajod.v13i0.1486
Wickenden, M. and Lopez Franco, E. (2021) ‘Don’t Leave Us Out: Disability Inclusive Participatory Research – Why and How?’, in D. Burns, J. Howard and S.M. Ospina (eds), The SAGE Handbook of Participatory Research and Inquiry, Vol. 2, London: SAGE
Wickenden, M. and Thompson, S. (2023) Insights from Qualitative Inclusive, Participatory Fieldwork with Learners with Deafblindness and Women with Disabilities in Bangladesh: Phase Two, Brighton: Institute of Development Studies, DOI: 10.19088/IDS.2023.032 (accessed 15 January 2026)
Wickenden, M.; Njungi, J. and Rohwerder, B. (2023) ‘Inclusive Early Childhood Development and Education in Kenya: What do Parents, Teachers and Children Understand, Perceive and Experience?’, Disability and the Global South 10.1: 2232–62
Wickenden, M.; Rohwerder, B. and Njungi, J. (2024) ‘ “I am a Role Model”: The Experiences of Peer Researchers with Disabilities Working on a Qualitative Research Project Exploring Inclusive Early Childhood Development and Education (ECDE) in Kenya’, Disability and the Global South 11.1: 1–15
Wickenden, M.; Rohwerder, B. and Njungi, J. (2022) Experiences and Expectations of Inclusive Pre-primary Education in Kenya: Reporting the Results of the First Round of Focus Group Discussions in Homa Bay and Kakuma, Brighton: Institute of Development Studies, DOI: 10.19088/IDS.2022.055 (accessed 15 January 2026)
Wickenden, M.; Shaw, J.; Rohwerder, B. and Thompson, S. (2021) ‘Lives Turned Upside Down in COVID-19 Times: Exploring Disabled People’s Experiences in 5 Low-and-Middle Income Countries Using Narrative Interviews’, Disability Studies Quarterly 41.3
Wickenden, M.; Thompson, S.; Adekeye, O. and Gwani, N. (2023) Report on Development of Children with Disabilities’ and Parents’ Wellbeing and Inclusion Checklist Tool Phase 2 - 2023, Brighton: Institute of Development Studies, DOI: 10.19088/IDS.2023.054 (accessed 15 January 2026)
© 2026 The Authors. IDS Bulletin © Institute of Development Studies | DOI: 10.19088/1968-2026.156 This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International licence (CC BY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original authors and source are credited and any modifications or adaptations are indicated.
The IDS Bulletin is published by Institute of Development Studies, Library Road, Brighton, BN1 9RE, UK. This article is part of IDS Bulletin Vol. 57 No. 1 March 2026 ‘Building Disability-Inclusive Futures’; the Introduction is also recommended reading.