[judith heumann]

To develop, implement, and evaluate effective policies to promote inclusion we need good research that asks the right questions, collects high quality data, and analyzes it appropriately.  Essential to all these things is the involvement of people with disabilities.  Too often, this involvement is not there, or only happens at a superficial level.  This month we’d love to start a discussion that provides some practical guidance on how OPD’s can work with NGOs, academics, development agencies, and governments to generate research that can support real change towards inclusion. Are you aware of successful examples? What are the barriers and how can we overcome them?

[Joseph Walugembe]

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when NGOs andWhile NGOs and Research agencies sometimes appear to move in oposite  diections, possitive results can really come out of their collaboration  for projects that aim at empowring people with  disabiliites.  one way to achieve collaboration  between NGOs and  researchers  is in  setting  and executing  a learning agenda   for example at Stromme foundation, we have  contracted  a univrsity faculty to work with  us  on setting learning queston  for the  economic empowerment project  for people with disabilities.   we have jointly developed  data collecton tools based  on the  learning agenda  that  combine academic  research riggor and practical needs for  project implementors. the researchers have trained  people with disabiltieis to   use the tools. when the  data is collected, the  researchers  faciltate  participatory annalsysi    and ther eis a  feeling that the findings which are emerging are likely to be owned up. they are evidence based and  the organizations and  people with disabiilties feel confident  to take them on board.

[Elizabeth Lockwood]

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One good practice to support real change toward inclusion is to actively recruit and hire researchers with disabilities to carry out research in international development and humanitarian action.

The following is a good practice in which researchers with disabilities carried out research on the Experiences of Persons with Disabilities in the COVID-19 Pandemic in Bangladesh, Bolivia and Nigeria.

As background, in response to the COVID-19 pandemic, the Stakeholder Group of Persons with Disabilities carried out two phases of qualitative research to gather information on the experiences of persons with disabilities in the context of the pandemic and to complement existing COVID-19 research studies. The first phase of research took place in 2020 with disability movement leaders from around the world and the second phase followed in 2021 exploring three countries in depth: Bangladesh, Bolivia, and Nigeria.

The second phase of research was funded by CBM Global Disability Inclusion. CBM Global follows the principle of nothing about us without, and thus employed researchers with disabilities to carry out the collection of data, analysis, and writing and translation (in two cases) of the final reports. Four researchers with a diverse range of disabilities carried out the research in three countries. All were nationals of the country, other than Bolivia in which the researcher was from the region. This enriched the research with the expertise of lived experience and local knowledge.

After the research, CBM Global held a follow-up session in which the researchers reflected upon and shared their experiences, some of which are summarized below.

• The most enthusiastic response from all the researchers was about being a researcher with a disability. This is because as persons with disabilities themselves, they helped participants to feel comfortable, build rapport, and share more information than they may have with researchers without disabilities. This was especially powerful since all participants wanted to share their stories about what has been happening to people with disabilities in the pandemic.
• Three of the researchers shared that this was the first time they had the opportunity to be a lead researcher so they were particularly grateful for the experience.
• Each researcher had reasonable accommodations (e.g. sign language interpreters), yet, all of the researchers encountered challenges during the research. These included lack of access to reliable internet; difficulty interviewing in local languages; encountering a variety of COVID restrictions; not having an honorarium for participants; and in some cases, reluctance from women with disabilities to participate.

It is essential that researchers with disabilities are included and leading research in international development and humanitarian research and data collection.

Read here for more information on the case studies in Bangladesh, Bolivia, and Nigeria.

[Daniel Mont]

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I heartily concur with the first two posts. It is essential to recruit people with disabilities — especially from the Global South — to become policy researchers. That is the main reason we developed our fellowship program. To find people who have started being successful on that path and give them some mentorship and resources to develop projects that they feel are important.

In our project looking at the impact of COVID19 on people’s ability to access assistive technology, it was very important that the people leading the qualitative data collection were all people with disabilities from the countries involved in the study — not just to collect the data but involved in the design of the data collection and data analysis.

Too often people with disabilities are add ons to a project to try to provide some sort of sign of legitimacy  — or even if they are deeply involved it is to study someone else’s agenda and not their own.  I’ve been guilty of that in the past, I am afraid, but now am working to be more of a support person and technical advisor.

 

 

[Claire O’Reilly]

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This is a great discussion prompt, thank you for launching this discussion!

In 2020, Heartland Alliance International partnered with the Iraqi Alliance of Disability Organisations and other local OPDs to conduct research into the experiences of gender based violence for disabled people in Iraq, and barriers they faced in accessing care.

All of the data collectors were persons with disabilities, and I agree with others that this was a positive and vital step. It improved our questions and tools, the quality of the data gathered, and the credibility and applicability of our findings.

I want to add to the discussion that having people with disabilities lead dissemination activities was another key step. Having local people affected by the findings advocate on the results and solutions was very powerful. It was much more engaging than an International NGO telling local policy makers, academics and service providers about what needs to be done.

One spillover benefit of collaborating on dissemination was the opportunity for the INGO to gain experience developing accessible materials, and to see the benefit of them. Heartland Alliance International is now working on making more materials accessible, for example through easy-to-read versions, across its programming.

[eEsma Gumberidze]

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Besides what CIP does through its fellowship program by engaging young persons with disabilities in research, it would be really great, if universities would do more research on disability issues. I mean organized academic research. I know, National University of Ireland in Galway is doing a lot in that direction. As they say, they are both academics and activists researching and advocating for disability inclusion. Also I would like to add that in Georgia over time I have more university students reaching out to me, as to an activist with disabilities asking for interview or a material on disability issues. They want to write assignments on disability topics. Many of them are not family members of persons with disabilities. Just youngsters interested in topic. I can say this both about journalist, social worker and law students. However on the other hand, we have an unfortunate reality, when persons with disabilities are often called just to participate in research as interviewees, not as researchers. For me, as for a person with disabilities, it was very easy to research and write a chappter on participation of persons with disabilities in decision-making processes for UNPRPD project proposal as a part of their situation analysis. Because I, unlike many non-disabled researchers, know first hand the difference between service-providers receiving and depending on state funding and independent watchdog OPD-s.

[Dr Ingrid van der Heijden]

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Thanks all who have contributed. This is a timely and important discussion to see happening, and I wish it would engage more experts (researchers with disabilities themselves). Co-producing and co-researching has been endorsed by many disability researchers (esp Barnes and Nind) who advocate emancipatory and empowerment research. I am thrilled to see some practical examples in this forum of inclusive research.

But how feasible is inclusive health research in volatile conflict/humanitarian settings where resources are restrained and OPDs are non-existent, compounded by the poor identification of persons with disabilities and lack of provision of reasonable accommodations in order to be involved in research about them and for them. There are also questions whether co-researchers can ever have genuine ownership of the research, which is inevitably initiated and managed by those in a position of power (i.e scientists, academics, funding bodies).

We need to collate best practices or practical examples of inclusive research and understand how or if they meaningfully impact on programming and address the needs of PWD- i.e are outcomes inclusive too? I’m doing some work in this field for a humanitarian/refugee organisation and the examples of inclusive RESEARCH are few and far between – most inclusion efforts focuses on humanitarian action and programming.

[judith heumann]

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I want to thank those who have responded thus far.  Elizabeth mentions some of the barriers that their researchers experienced.  This is very valuable information.  I am interested to know whether other projects experience similar barriers.  Additionally, when you as researchers decided that there was true value in including disabled researchers in your projects, how did you find them?  Was there any reluctance on the part of DPOs to participate?  Were DPOs involved in determining the program design?
It is clear that the inclusion of disabled people in the design and implementation of research projects is occurring more frequently.  Learning about problems, for example, in the design of projects, recruiting disabled people as researchers and participants in the research, and dissemination of results would be interesting to learn about.

PLEASE ENCOURAGE OTHERS TO PARTICIPATE IN THIS FORUM

[Sofie Sergeant]

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What an interesting question, thanks for all the contributions so far.
Together with researchers, experts by experience, designers… we created a training for inclusive research groups, to support the collaboration in al phases, from the design and birth of a research project until the dissemination of the results. We experienced it is not only the persons with disabilities working in research who need support, it is in the collaboration dilemmas and issues occur. The meta-reflection on “how do we work together”, “who needs what… to be able to contribute” are important questions to bring to the table. The joint ambition is also an important topic: “what is the research work bringing for you?”. In the Cabriotraining we try to create space for these questions and thus for reflection on the how of the making of inclusive research. Please feel free to contact me or to read about our adventures: Working Together, Learning Together: Towards Universal Design for Research — Vrije Universiteit Amsterdam (vu.nl)

[Dr. Francis Adams]

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Thank you very much for launching these discussions!

As a person with disabilities, I used autoethnography as my core research methodology to conduct what is now termed as “a groundbreaking PhD research” in South Africa (study period October 2016 – May 2021). My main objective was to better inform myself about policy issues that could be affecting people with marginalized identities like the San People of Southern Africa and their family members with disabilities.

Therefore, the study examined the experiences of a group of the San people continuous forced-relocation in Southern Africa and the impact that had on their basic human rights and intangible cultural heritage. I then used my evidence-based findings to develop inclusive concepts and advocated for the target group in South Africa.

As the research impact, I have spent several months in South Africa on official invitations to give evidence-based policy advice to the local government, academic institutions, traditional leaders and many more established institutions in the country, focusing on sustainable and effective ways to align the San Heritage with the UN-SDGs policies.

Some of my success notes:

• I was able to use my lived experiences to collect evidence-based data and to also simplify developmental theories linked to the UN-SDGs policies. This made it easier for authorities and stakeholders to read more meaning to the data and concepts I presented. In other words, finding out the underlining disability issues are as important as finding strategic ways and means to link authorities to the study findings.
• As a native African researcher with similar cultural background as the target groups and with disabilities, I was able to use the research findings to mediate between authorities and the San people and families with disabilities. This made it possible for me to close the gap that existed between them and paved way for the San to participate directly in future policy decisions that would affect them.
• The evidence-based findings in regards to specific disability issues were the key motivation for authorities to take ownership of my recommendations. So I capitalized on that and established a unique collaborative network and platform that included the diplomatic society, industry, the army, academic institutions, NGOs, traditional leaders, broadcasting houses etc.. That created a unique pool of experts from diverse backgrounds across South Africa, making it easy to create synergies in order to implement the research recommendations in the research community, Platfontein, in the Northern Cape.

The feedback and appreciation letters I am receiving from the NGOs in South Africa, my university (the University of the west of Scotland) and the British Council etc.. clearly stated that I have successfully demonstrated that researchers with disabilities have extra value in conducting phenomenological in-depth studies. They also stated that we have natural charisma to link people to study findings – to change mindsets. However, the challenge still remains – where are the development agencies etc. to absorb us – give us the chance in terms of job offers?

(Dr. Francis Adams, Germany)

[lmorris]

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Thank you for this interesting and important discussion. I would like to build on the responses with reference to the Inclusive Futures consortium programme. This programme develops learning and research with OPDs alongside programme implementation, to fill gaps in evidence about disability inclusive development.

The programme delivers innovative health, education, livelihoods and media projects through partnerships between non-government actors, OPDs and research partners. While doing so, it also generates evidence and programmatic learning about what works to include people with disabilities in development programmes.

Some examples relevant for this discussion include, quantitative and qualitative research pieces produced through partnerships between Organisations of Persons with Disabilities (OPDs) and consortium partners, on areas including how OPDs filled the gaps in COVID-19 responses. The research includes considerations for government, civil society and donors to meaningfully engage OPDs in current and future programming. Academic partners within the Inclusive Futures consortium also work with researchers with disabilities to document in greater detail the experiences of people with disabilities in and beyond the development programme, including how COVID-19 has impacted the most marginalised. Randomised control trials (RCTs) and impact evaluations are also used to effectively measure programme impact for people with disabilities, generating the ‘impact’ evidence often required for programme and policy decision-making. Further evidence and learning gathered through direct programmatic experience, including programme learning on meaningful OPD engagement, are brought together and shared in pieces such as ‘Four lessons on Inclusive Humanitarian Aid’. Research, data, learning and evidence are fed back to influence programme delivery, with the programme continually adapting to use new evidence. Examples of these resources are available at inclusivefutures.org, including as Easy Read versions.

[Author]

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