Disability bitesize: on ableism in research
Published: 13 February 2023
Continuing our recently-established "disability bitesize" feature, SHW Disability Champion Stefanie Krauth urges us to consider carefully the language and terminology we use within the context of health-related research, to avoid ableism and reinforcing negative perceptions of disability
Continuing our recently-established "disability bitesize" feature, SHW Disability Champion Stefanie Krauth urges us to consider carefully the language and terminology we use within the context of health-related research, to avoid ableism and reinforcing negative perceptions of disability.
After a month’s break over the end of year holidays, I want to talk about ableism in (our) research.
First, here’s the (attempt of a) definition for some words that might not be known to everyone:
Ableism: Discrimination and social prejudice against people with disabilities. People are defined by their disabilities and are assigned or denied certain perceived abilities, skills, or character orientations and are seen as inferior to the non-disabled. Ableism is discrimination in favour of non-disabled people, while disablism is discrimination against disabled people.
Reductionism: The approach to explain phenomena by the sum of the underlying principles. Interpreting a system as the sum of its part, breaking it into a simple set of variables that offer the possibility of identifying a cause and an effect. Many fields of medicine use reductionist approaches to understanding disease by focusing on how biomedical processes generate disorders.
I came across this interesting paper in December: Ref. Botha & Cage (2022), Autism research is in crisis, Front. Psychol. 13:1050897
The paper highlights an aspect of disability that is highly relevant for our school because many of us are researching conditions that we or our colleagues may experience themselves.
In our roles as researchers, we actively impact the language, perceptions, and experiences of disabled people, some of which are our colleagues and friends, even if we are not aware.
Medical research, with its generally reductionist approach and biomedical worldview, can easily fall prey to unintended ableism despite our best intentions.
As exemplified in the paper by Botha & Cage, which focuses on autism research, we often talk about conditions of interest in disabling terms so that the very definitions we use for the condition can be dehumanising.
This is particularly relevant when defining autism and other neurodivergences, developmental disorders, mental health conditions, and learning disabilities.
Some of the very things we fundamentally attribute to being human, such as having complex emotions, agency, community, culture, identity, empathy, or warmth are said to not be present in people with some conditions.
Such phrasing inevitably determines our understanding and therefore how we talk, and get talked to, during assessments, reasonable adjustment talks, and general conversations. It also influences how comfortable people are to disclose their disability to colleagues, line managers, and the university and therefore whether they get support.
Botha and Cage analysed which research approaches used more allistic language and found that (purely) medicalised approaches were most prone to allistic language and concepts, whereas research where the target groups were included early on, e.g. via disability groups, was generally less allistic.
Many research groups in the school are already doing a great job at including patient advisory groups, consultants etc., which is good news! However, it is worth noting that even including disabled people as more than just participants was not necessarily enough to prevent ableism in the research that was analysed by Botha and Cage.
We are called as researchers and allies to sit down and discuss the language we will use at a very early stage of new research projects and re-evaluate it throughout projects. This should be a discussion with the entire research team and include advisers from disability groups and representatives of the condition we want to study. If possible, anthropologists or other social science experts on the topic can be included when key language, definitions, and concepts we plan to use are defined. At this stage, we may also think through how our approach might influence and impact our own research process, the write-up, and ultimately our target groups.
These are just a few suggestions of what we can do as researchers to ensure we have the best positive impact on our target groups and do not inadvertently do harm
SHW Disability Champion
Research Associate (General Practice and Primary Care)
First published: 13 February 2023