Disability Research: Nothing About Us Without Us

In psychology, there is a stigma against conducting me-search, or self-relevant research about one’s own identity or experiences. This bias overshadows the fact that self-relevant research is common and can be a strength, especially by increasing the inclusion of underrepresented minorities like people with disabilities.

Comprising 26% of the adult U.S. population, people with disability represent the largest minority group and perhaps the only minority group you can join at any time. However, disabled researchers and—consequently, I would argue—disability research, is severely underrepresented in our field. In a report examining the years 2006 to 2012, only 2% of faculty and 3% of students in APA-accredited programs reported a disability. More recently, the National Science Foundation reported that only 3% of STEM workers had a disability in 2021.

Self-relevant research is widespread in the field of psychology, yet we neglect to recognize the most prevalent kind as such. Our field has long been criticized for sampling primarily Western, educated, industrialized, rich, and democratic (WEIRD) participants. Interestingly, there is so little attention paid to disability in psychology that its absence has not even been noted in that acronym. I might propose adding a new letter, for "abled," leading to WEIRDA. Unsurprisingly, WEIRDA samples match the demographics of the academics doing the research and the editorial teams of top journals. Thus, one might argue that WEIRDA samples are also self-relevant research.

When people in the majority group study the majority group, their research is perceived as universal and objective; when minority group members study experiences of their own group, it may be perceived as subjective and biased. This is because dominant identities—e.g. whiteness, abledness, etc.—are often perceived as the default or neutral. In contrast, research on identities and experiences that are outside the dominant group is perceived as less important or relevant; it is seen as niche and relegated to “specialty" journals. Thus, self-relevant research on minorities is more likely to be classified as such compared to self-relevant research on majority samples.

Another reason self-relevant research is more common than it appears is that not all minority identities are visible. The distinction between visible and invisible identity affects the salience of self-relevant research, or whether it is identified as self-relevant at all. When a person has an invisible minoritized identity (e.g. a mental health condition or a chronic pain disorder), people may assume the default—as discussed above: that the person is a majority group member. As a visibly disabled researcher, anyone who views my headshot or listens to me speak at a conference can make the connection between my identity and my disability research. This experience is shared by many members of racial and ethnic minorities and some sexual and gender minorities whose identities are visible.

In a study of clinical, counseling, and school psychologists and students, more than half of participants reported engaging in self-relevant research. Compared to majority group members, minorities were more likely to report conducting self-relevant work. This study also found that self-relevant researchers were rated as more biased and having poorer judgment compared to researchers who did not conduct research relevant to themselves. Participants who reported not engaging in self-relevant research made more stigmatizing judgments of self-relevant research than participants who reported having conducted self-relevant research.

Kathleen Bogart

Source: Beau Bogart / used with permission

A Personal Example

As a case study of the benefits and challenges associated with self-relevant research, I’ll describe some of my own experiences as a self-relevant disability researcher. I was born with a rare neurological disorder, Moebius syndrome, which results in facial paralysis. Communicating in an unusual way made me fascinated with social interaction, drawing me to psychology. As an undergraduate, I wanted to do a term paper on Moebius syndrome. However, I was frustrated to discover that there were only a handful of studies on the topic in psychology. The existing research examined Moebius syndrome for the purpose of better understanding “normal” processes. Critics have noted that majority group members researching minorities often take a deficit approach, with a goal of understanding dominant groups rather than understanding or improving the daily lives of minorities.

Recognizing the need to fill the gap in research on quality of life among people with Moebius syndrome and other conditions involving facial paralysis, I realized I had the unique motivation and insight to build this field. While pursuing graduate work, I found it challenging to find mentors. Psychology graduate programs follow an apprenticeship model, which hinges on finding a mentor who is an expert in your chosen field of study. The lack of psychologists studying facial paralysis combined with the paucity of role models with disabilities were barriers to finding a suitable graduate program.

Eventually, I found excellent mentor-allies with expertise in broader areas that could be related to facial paralysis. At the start of my graduate work, I also connected with Moebius syndrome and facial paralysis communities for the first time. These connections were invaluable, providing me with an understanding beyond my own experiences of the issues facing this diverse group of people. I have since conducted some of the largest and most comprehensive psychosocial studies of people with facial paralysis.

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Challenges of self-relevant disability research

The most common argument against self-relevant research is that it interferes with objectivity. Critics may argue that a self-relevant researcher may overweight their own perspective at the expense of others when conducting research. Of practical concern is that a self-relevant researcher may have preexisting relationships with participants and community organizations. If a participant knows a researcher, the participant may feel social pressure to participate or to respond in ways that the researcher might approve of.

Benefits of self-relevant disability research

As exemplified in my experience, self-relevant researchers may be motivated to fill research gaps and make discoveries that otherwise would not be explored. Shared identity between researchers and participants builds trust and engagement, especially in marginalized populations that may mistrust science due to previous harms. Insider knowledge may promote more valid and representative research questions, study designs, sampling, interpretation, and implementation of findings. Thus, research is more likely to directly benefit the community.

Maximizing the cost-benefit ratio of self-relevant research

Considering positionality. Positionality statements have been an important tradition in qualitative research, but are less common in quantitative work. Positionality statements are a transparent acknowledgement of the ways in which one’s own perspective as a researcher has influenced one’s work. There is a growing movement to include positionality statements in quantitative psychology research as well. When majority group members engage in positionality statements, it may prompt reflection and encourage them to conduct more inclusive team science.

Those with invisible identities can choose not to disclose the self-relevance of their research, while those with visible or apparent identities do not have this privilege. Thus, it should be noted that positionality statements put people with invisible identities in a position where they may feel expected to disclose a self-relevant identity but do not feel safe doing so. Fear of disclosing due to stigma speaks to a larger problem in our field as a whole that must change, but in the meantime, it is important to consider this paradox.

Participatory research. Organizations and funders are now calling for community-based participatory research. This approach asserts that community stakeholders with lived experience should co-produce science with researchers. Best-practice guides for this type of research focus on decentering power structures, building knowledge, skills, and trust, and co-creation at every level, with the goal of developing research that solves the self-identified problems of communities.

Conclusion

As our field moves closer to fully open science, we need transparency around diversity. Psychology’s WEIRDA self-relevant research will continue until we diversify our education, faculty, peer reviewers, and editorial boards. Destigmatizing self-relevant research will increase the recruitment and retention of diverse researchers, further enhancing the science that is produced in our field.

A longer version of this article appears in Communications Psychology under a Creative Commons Attribution 4.0 International License.