Authors: Mary Wickenden behalf of disability researchers at the Institute of Development Studies
This is a compilation of challenges disability researchers at IDS have encountered while working on a variety of research projects focussed on diverse aspects of disabled people’s lives in different cultural contexts, in high, middle and low-income countries.
These draw mainly on our experience of doing qualitative research but many also apply to quantitative work. It is noticeable that these issues so often occur in similar ways across settings, no matter what the subject of the research.
- Because being invited into research spaces is unusual for many disabled people, their first response (or that of their families/carers) may be to decline, if they expect that the appropriate support and adaptations will not be available. Information and invitations need to emphasise that disability inclusion has been considered and that all are welcome. Attending an event where the right support is not provided is as exclusionary as not being invited at all.
- Participatory disability-inclusive is still a rarity and is not considered standard in most research and engagement activities. It is often only considered when the project is specifically about disability. However, it needs to be the default approach in all activities, so that disabled people are not excluded from participation in engagements about the whole range of topics that the rest of the population are asked about (for example about community events and services, action for climate change mitigation, transport, gender based violence, food security etc)
- More time and resources (including the team’s skills and experience) are usually needed. Planning and budgets need to anticipate and expect these needs.
- Power dynamics exist between disabled and non-disabled people, between genders (disabled men usually have more power and choice than disabled women). There are also power gradients between people from different impairment groups (those with communication, intellectual, complex and psychosocial difficulties are more marginalised), which often exclude these people from engagements and events. Any very verbally complex or written methodology is likely to exclude many people.
- Working closely with the local OPDs who know most of the disabled people in the community well is essential but time to establish rapport with them is often short.
However, it should be remembered that there may be some disabled people who are not members of these groups, and extra effort to include them needs to be made, for example by going through other community agencies who will know which families have a disabled member. - There are extra ethical considerations to be taken into account when working with people with disabilities. They often dislike being described as ‘vulnerable’ as individuals and may not necessary feel this way themselves. However there is no doubt that disabled women and girls are particularly at risk of gender-based violence, as well as bullying and coercion. Many disabled people may find it difficult to ask for clarification about what is involved in a project, or to decline to participate. Information and consent processes need to be carefully adapted to ensure that people understand what they are agreeing to (including using alternative formats such as easy-read written information, signing, symbols, pictures).
- Consent should of course also be an ongoing process so that individuals can easily withdraw if they wish to. Careful monitoring of participants’ verbal and nonverbal communication to ensure they are happy to continue is essential.
- Finally, output materials that report the project should also be produced in a variety of formats such as easy-read, and visual methods (eg signed, symbol/picture based, video) to enable all participants to understand the findings.
Principles for conducting disability inclusive research are explained more in our practical guide and you can also read about how challenges and mitigation strategies played out in practice in our work in Bangladesh.
