The lack of legal recognition of deafblindness by States as well as other international, national, and sub-national actors, leads to the invisibility of persons with deafblindness in statistics, research, policies, programmes, and mainstream services for the general population and disability-specific services[i]. Data and research on persons with deafblindness help decision makers to pay attention to the specific supports required by persons with deafblindness and inform planning and budgeting processes.
Based on WFDB’s experience of preparing the first and second global reports on the situation of persons with deafblindness, there is still a need for more and better-quality data on the situation of persons with deafblindness. For example, many studies on deafblindness are very small scale and do not necessarily reflect the experiences of persons with deafblindness at a national level. Further, many different definitions or measurement tools have been used for identifying persons with deafblindness, which can make it difficult to compare findings across time and place. Similarly, national surveys have often used tools for measuring disability that do not allow for the identification of persons with deafblindness (e.g., based on categories of impairments where deafblindness is not an option). Even when surveys do include tools, like the Washington Group Questions, analyses may not be disaggregated to include deafblindness as a unique category of disability. Many surveys may also not have sufficient sample sizes to explore many outcomes amongst persons with deafblindness, particularly children with deafblindness.
In addition, persons with deafblindness are a diverse group, which can create challenges when trying to classify or quantify the group[ii]. Not having deafblindness as a distinct disability or choice in surveys means that persons with deafblindness often must choose between deaf or blind options on surveys, which skews the data.
Deafblindness can even be neglected within disability-specific research. This is because persons with deafblindness are often left out of wider research on persons with disabilities and because of a lack of funding and/or links with research institutes. Smaller groups, like persons with deafblindness, are often deprioritised due to their numbers. However, because deafblindness is a low-incidence, high support needs disability, there is a very limited understanding of the requirements of persons with deafblindness and, therefore; a high demand for evidence and information on what works for persons with deafblindness.
[i] World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 8.
[ii] Damen, Saskia, “The challenge of identifying deafblindness”, British Journal of Visual Impairment, 2019, Vol. 37(2) 77-80; National Centre on Combined Vision and hearing Impairment / Deafblindness, Eikholt Annual Report, October 2021, p. 6.
Greater international cooperation is needed to formulate an international research agenda, bringing persons with deafblindness and researchers together[i]. In addition, persons with deafblindness can contribute to research in a variety of ways, including:
Persons with deafblindness will require communication support, such as interpreter-guides/Deafblind interpreters, and other accessibility requirements and reasonable accommodations to participate in research activities and may require training, depending on their roles and experience.
Large surveys, such as national censuses, should include the Washington Group Questions, to support disaggregation by disability and increase the visibility of persons with disabilities in data, including persons with deafblindness. WFDB in partnership with ICED has established a method for identifying the number of persons with deafblindness in survey data that uses the Washington Group Questions, which are outlined in detail in the chapter on Prevalence.
However, it is important to note that many mainstream surveys may not have sufficient sample sizes to explore the experience of persons with deafblindness in detail, particularly children with deafblindness. For example, it was not possible to explore outcomes such as access to health and education in children at a national level using the MICS data, as most countries identified fewer than 10 children with deafblindness and some countries did not identify any children with deafblindness.
Censuses, which attempt to gather information from all people in a population, are most likely to have sufficiently large sample sizes to measure outcomes amongst persons with deafblindness, however, they are conducted infrequently (typically every 10 years). Additional data collection on the situation of persons with deafblindness may be needed to complement these mainstream surveys.
Additionally, mainstream surveys need to be accessible and inclusive in their design so that the experiences of persons with deafblindness can be accurately collected. For example, in the MICS, literacy and numeracy are determined through children performing a task that is based on written materials (e.g., reading out a sentence for literacy or performing mathematical calculations described in the text) and oral instructions. Since these tasks are not provided in accessible formats (e.g., Braille, instructions delivered with tactile signing, etc.), it does not provide a true picture of the literacy and numeracy of children with deafblindness. Training of data collectors and the provision of supports (e.g., Braille, sign language) are needed during data collection.
Most importantly, there needs to be research and evidence that specifically focuses on and prioritised by persons with deafblindness (i.e., globally available evidence on the effectiveness of models and/or services that maximise independence and autonomy and improve the quality of life of persons with deafblindness)[iii].
This research needs to align with the CRPD and reflect the latest understanding of deafblindness. Key research priorities include the continuous assessment and revision of interpreter-guide/Deafblind interpreting services, assistive devices and technologies, and good practices on what works for persons with deafblindness in both disability-specific and mainstream services.
[i] Damen, Saskia, “The challenge of identifying deafblindness”, British Journal of Visual Impairment, 2019, Vol. 37(2) 77-80.
[ii] SUITCEYES, Best Practice Recommendations for Engaging Deafblind Participants in Research, https://suitceyes.eu/wp-content/uploads/2020/12/D8_D2.3-Best-practice-recommendations-for-engaging-deafblind-participants-in-research.pdf, accessed May 2022, p. 7.
[iii] Jaiswal, Atul. Deafblind Ontario Services, Stakeholder Consultation Project, August 2019, p. 28.
Governments
OPDs and NGOs
Donors and Research Institutes