The Importance of Definition of Terms in Disability Research

Abstract

Research is conducted to inform our understanding of broadly defined topics often described in terms that are used in common discourse. In order to carry out research, it is necessary to develop specific definitions which are also measurable. The way a concept is defined should be determined by the objectives of the research project, making it necessary for these objectives to be clearly stated. For example, if a research enterprise is undertaken to provide information to monitor whether policy commitments have been realised, the definitions used must be grounded in the frameworks that define those commitments. If this is not the case, the research findings cannot be used for their intended purpose. Transparency in how concepts are defined is also key to the ethical use of research findings. Given the complex and multidimensional nature of disability, definition is particularly important in disability research. This chapter will first review the need to clearly define disability when conducting disability research, and will discuss the need to identify the population or populations with disabilities in order to monitor full inclusion in society. The difference in the level of inclusion in society among those with, as compared to those without disability, is referred to as the ‘disability gap’. The Chapter will then address challenges in identifying the population with disabilities consistent with the social and human rights models of disability. Finally, this chapter will conclude with a presentation of the data collection tools developed by the Washington Group on Disability Statistics.

Citation

Madans, J.H. (2024), "The Importance of Definition of Terms in Disability Research", Good, A., Elliott, I. and Mallon, S. (Ed.) Advances in Disability Research Ethics (Advances in Research Ethics and Integrity, Vol. 11), Emerald Publishing Limited, Leeds, pp. 49-69. https://doi.org/10.1108/S2398-601820240000011004