International Development Committee Inquiry: FCDO and disability-inclusive development

Evidence submission from the Institute of Development Studies

The Institute of Development Studies (IDS) is a global research and learning organisation for equitable and sustainable change. IDS is ranked best international development policy think tank (2019 Global Go To Think Tank Index) and first in the world for development studies by the QS University Rankings, with the University of Sussex.

This evidence submission is largely based on the work of IDS researchers Brigitte Rohwerder, Stephen Thompson and Mary Wickenden.

For further information relating to this evidence submission or to request oral evidence from the researchers, please contact: Mahnoor Mahar, Communications Support Officer (External Affairs), m.mahar@ids.ac.uk +44 (0)1273 91 5703

1. Freedom of Religion or Belief and disability

1.1. The Coalition for Religious Equality and Inclusive Development (CREID) was a partnership led by IDS and funded by the FCDO between 2018 – 2022. The programme looked at how poverty reduction efforts can actively redress religious inequalities, support inclusive, religiously diverse communities and promote the benefits of interdependence among people beyond religious and non-religious lines. From this research IDS has evidence on the intersection of people living with disabilities and religious marginalisation.

1.2. The FCDO Disability Inclusion and Rights Strategy 2022-2030 does not include any mention of people with disabilities who are also experiencing additional marginalisation based on their religious belief or ethno-religious group. Thus, the FCDO need to implement purposeful policies that seek to do more to incorporate their insights and experiences. Purposeful policies should be inclusive of people with disabilities and experiencing religious marginalisation. This may include:

• Ensuring that FCDO practices are mindful of creating an enabling environment for people with disabilities to participate. Now is the time for all of us to pledge to having all our public events with sign language interpretation, captions and to introduce other measures, as needed, to make events more accessible.
   
• Ensuring that our outreach to people excluded on the basis of religion or norms and beliefs also includes members of the communities who have disabilities. This means including them not only as beneficiaries but also as participants in the process of setting the agenda.
   
• Ensuring that our research considers the intersection of disability and religious marginality. This is challenging and requires a great deal of purposeful rethinking of how we collect data, with whom, how and where.

1.3. Ultimately, we are scratching the surface on how to interconnect freedom of religion or belief and freedom to live a full life as a person with disability. Champions of freedom of religion or belief (FoRB) and rights of people with disability have each respectively sought to de-ghettoise their causes so they become part and parcel of our way of life. Now is a good time to engage in deeper, sustained dialogue so that FoRB-promoting actors can become mindful in their practices of the rights of people with disability. Additionally, champions of inclusion for people with disability can also engage with those members that face additional marginalisation on account of belonging to a religiously marginalised group.

2. The role of the UK in disability inclusion within the global humanitarian and development community

2.1. In many settings, people with disabilities face multiple and complex layers of environmental, societal, and structural barriers. These barriers can lead to them being disproportionately harmed, neglected, and excluded during humanitarian and other emergency responses. This is especially evident in low-and-middle-income countries (LMICs), including Nepal and other South and Southeast Asian nations.

2.2. Limited awareness of the needs of people with disabilities, entrenched social stigma, and inaccessible infrastructure can exacerbate the challenges they face in emergency situations. In addition, there has been little preparation and planning to make disaster and emergency planning disability inclusive.

2.3. Involve people with disabilities in humanitarian action and emergency response. Engaging with civil society, especially organisations of persons with disabilities (OPDs), can support the meaningful participation of people with disabilities. This should expand across all stages of programme planning, implementation, monitoring and evaluation, and peacebuilding activities.

2.4. Ensure disability inclusion across emergency services. These include shelter, food provision, transportation, emergency health, safe water, and sanitation services (including for continence).

2.5. Ensure in-crisis adaptations to regular services are disability inclusive. People with disabilities must have continued access to regular services, including alternative education and health services, and equipment necessary for their wellbeing.

2.6. Tailor communication as people with disabilities may require adapted information on what to do to protect themselves and access support. Identify and utilise contextually relevant sign languages and Braille systems. Use audio and captioned media, and plain language and Easy-Read materials. Engage carers and support networks to reach those unable to use these or other communication methods.

2.7. Provide protection from physical, emotional, and sexual abuse. People with disabilities face heightened risk of abuse because they are often more isolated and have less access to protection services – especially if they are displaced or separated from support networks. This is a particular concern for women and children with disabilities.

2.8. Recognise and respond to diverse needs. People with disabilities have different types and degrees of impairment. Disability may also intersect with other aspects of identity (e.g., gender, age, income) to shape individual vulnerability. Ensure interventions support the diverse needs of individuals with different identities, backgrounds, and impairments.

2.9. Recognise and support carers of people with disabilities. Many people with disabilities depend on care from family members, friends, or organisations in their communities. During emergencies, people involved with providing care must be supported so that they can continue caring for people with disabilities, and for themselves. The gendered nature of informal caregiving roles must also be considered – women are more likely than men to take on this work.

2.10. Gather more and better data and information. More data about people with disabilities are needed to support crisis preparedness and response. These data should include internationally comparable and disaggregated quantitative data (by disability, sex, and age) and context-specific qualitative data (e.g., diverse needs, capacities, and priorities of people with disabilities). Engaging social scientists and affected communities to support knowledge in this area is critical.

2.11. Ensure planners and responders are accountable to people with disabilities. Although the importance of inclusive programming is increasingly understood, challenges to effective implementation remain. Information on ways to improve this can be gathered by different approaches. Implementing and supporting accountability mechanisms, including intervention and data monitoring, is one approach. Another is to set up ways for people with disabilities to ask questions and express concerns about responses.

2.12. Advance day-to-day disability inclusion. Address everyday barriers by enhancing infrastructure, transport, and communication systems to be disability inclusive. Also address issues of poverty, economic exclusion and isolation, which disproportionately affect people with disabilities. Support and work with civil society, especially OPDs, to achieve sustainable change.

2.13. Enhance societal understanding of disability. Promote human rights-based and holistic understandings of disability among decision-makers, humanitarian teams and the public. Emphasise how social, cultural, and environmental factors contribute to the disablement of people. Aim to counter dominant understandings that medicalise and individualise disability, and which reinforce notions of people with disabilities as objects of charity.

2.14. Counter disability-related stigma. Avoid negative or stereotyping messages and images that could exacerbate stigma experienced by people with disabilities. Avoid perpetuating, and aim to actively counter, still common views of disability as a punishment for sins. Some groups may be at greater risk for stigma, such as women and girls with cognitive or psychosocial disability, and people from ethnic or religious minority groups.

This section of evidence is based on an evidence brief from the Social Science in Humanitarian Action Platform (SSHAP), a partnership between IDS, Anthrologica, CRCF Senegal, Gulu University, Le Groupe d’Etudes sur les Conflits et la Sécurité Humaine (GEC-SH), the London School of Hygiene and Tropical Medicine, the Sierra Leone Urban Research Centre, University of Ibadan, and the University of Juba.

3. Ensuring ethical disability-inclusive research

3.1. The Sustainable Development Goals (SDGs) are designed to leave no one behind. To achieve them, it is vital that people with disabilities are included in all aspects of development-focused work, including in research where the ethical implications must be considered carefully.

3.2. Article 31 of the UN Convention on the Rights of Persons with Disabilities requires that collecting and maintaining data complies with internationally accepted norms to protect human rights, fundamental freedoms, and ethical principles. There are various guides and tools available to assist researchers in achieving these goals such as the Ethical Guidance for Research with People with Disabilities from the National Disability Authority of Ireland. However, the practicalities of including people with disabilities in research can present ethical challenges requiring careful thought.

3.3. Experience from Bangladesh:

At the Institute of Development Studies (IDS), we recently undertook a piece of inclusive and participatory fieldwork in Bangladesh for the UK Aid-funded Disability Inclusive Development programme. The study explored the experiences of learners with disabilities of the adapted BRAC STAR youth employment programme (watch a short video introduction to the programme).

Our research involved working with learners with disabilities in participatory workshops, designed and implemented with partners including International Non-Government Organisations (INGOs) and Organisations of People with Disabilities (OPDs). Each participant received information in advance, and we planned to gain consent from each participant after an initial briefing to ensure their decision to participate was taken with all the necessary information. We had planned to provide information in different formats as well as through interpreters, and we aimed to record verbal consent, or if the participants felt comfortable giving it by signing or with a thumbprint.

One participant, Fatema (not her real name), arrived and seemed happy to be involved. Fatema had a hearing impairment and could not speak. She usually communicates using informal sign language and a relative was expected to assist her with interpretation on the day. However, another participant informed us that the relative had been involved in an accident and could not attend. We were presented with a dilemma – we wanted our research to be inclusive and to give Fatema every opportunity to be involved. However, without interpretation, how could we be confident that she had fully understood what participation involved and would this prevent her from giving informed consent?

The approach we took to navigate this situation involved three steps:

• Safeguarding

Safeguarding during research is as essential as any other area of development and humanitarian work. ‘Do no harm’ is a central principle of research ethics. Our first duty was to ensure that Fatema would be safe if she participated. We felt that the methodology of a participatory workshop did not put the participants at any foreseen risk. While our focus was on skills training, we could not rule out emotive topics coming up. However, we were confident that the team had the skills to support anyone who might have strong feelings during the sessions. Through our partners, we had links to local services that might be appropriate to refer to in the event of someone needing them. We judged that Fatema was not being put at risk through participation.

• Ask partners for advice

We spoke at length with our partners about the situation, who knew Fatema personally and had interacted with her family. While they could not speak on her behalf, and certainly could not offer to consent for her, they could say if they felt participating was in Fatema’s best interests or not. They shared that when she and her family had been briefed about the research, she was positive about being involved and was looking forward to sharing her experiences.

• Adopting a flexible approach

Although our research protocol required that we seek consent directly from participants after a briefing, the situation suggested we take a flexible approach. The partners recommended that the summary of the briefing could be delivered by another participant who knew Fatema and who was able to communicate well with her, despite not knowing the exact informal sign language that she used. This briefing stressed that participation was voluntary, and Fatema was free to leave at any time. In addition to this, we also observed Fatema’s body language – she seemed very relaxed and comfortable. While it could not be taken in isolation as an indication of consent, the fact that Fatema had shown up for the workshop was also considered a further sign that she was happy to participate.

3.4. Principle over process. Ethics must be taken into consideration in all human-focused research and as such is important to development-focused research. Processes must ensure participants’ human rights and fundamental freedoms are respected and that they come to no harm. Every situation is different, as is every participant. A flexible approach may be needed to ensure that participants with disabilities have the same opportunities to participate as anyone else. For development research to be meaningfully inclusive and safe, the principles of ethics must take precedence over the process.