Recently, I had an incredible opportunity to write an article for an academic journal, Rehabilitation Psychology, titled #SaytheWord: A Disability Culture Commentary on the Erasure of ‘Disability’ (Andrews et al., 2019). One of the most thrilling parts about this was that it was written by six women psychologists and researchers, all of whom identify as disabled! Since there are so few disabled women in academia, this was especially exciting to me because this represents the interaction of disability identity with self-advocacy. We, the six of us, were advocating for our disability community from inside the community.
The impetus for this piece came from the professional organization American Psychological Association’s choice to rename the disability resource room at their national conference. They chose to take out the word “disability” in the name and replace it with a euphemism. This is an example of “disability erasure,” where people avoid saying the term disability because they think there is something inherently negative or bad about having a disability.
In our article, we talk about how erasure of disability identity is especially threatening to members of the disability community. What we mean by this is, shying away from the actual word “disability” is a form of cultural erasure. It suggests that people with disabilities shouldn’t identify with their disability or form community with others who have shared experiences. Instead, embracing the word “disability” helps to send a message of acceptance and acknowledgement of disability as identity. This is something to be proud of, rather than ashamed of.
As we stated in our article, “in order for disabled people to forge the type of solidarity and pride seen with other diverse identities, they must be able to self-identify as a member of the group; given the isolation faced by so many in the disability community, socialization and contact with other disabled people is imperative (Bogart, et al., 2018; Darling & Heckert, 2010)” (Andrews et al., 2019, p.4).
Advocacy takes on many different forms. Sometimes we are advocating for ourselves when we encounter discrimination due to our disability. Sometimes we advocate on behalf of the broader disability community. Sometimes we participate in rallies or visits on the Hill to engage with lawmakers and policy makers about specific disability needs or to fight for a cause. Sometimes we advocate behind closed doors to ensure that internal policies and procedures are as inclusive as possible and compliant with current law.
Sometimes advocacy is sparking a social media movement like Lawrence Carter-Long did with the creation of the hashtag #SayTheWord, or Gregg Beratan, Andrew Pulrang, and Alice Wong with the creation of the hashtag #CripTheVote, both of which led to a broader attention and advocacy. Sometimes writing pieces for a professional publication or organization is advocacy. Sometimes the act of just being, existing, and interacting in the world is advocacy.
When the voices of disabled people are centered through these forms of advocacy, we are talking about disability identity. Disability identity can be defined as a sense of self that includes one’s disability and feelings of connection to, or solidarity with, the disability community (Dunn & Burcaw, 2013, p. 148).
From my work, the broader components of disability identity include acceptance, relationship, adoption, and engagement (Taylor, 2017). A coherent disability identity is believed to help individuals adapt to disability, including navigating related social stresses and daily hassles (Forber-Pratt & Zape, 2017). We are working to further refine these developmental statuses as we are going through the process of developing and validating a measure of disability identity development.
As individuals form their disability identity and go through each of these statuses, there are aspects of self-advocacy seen throughout. Self-advocacy that amplifies the experience, knowledge, and voices of people with disabilities voice also acknowledges the pride around being disabled. The message is clear: we are proud of who we are, and we have something to say!
Andrews, E.E., Forber-Pratt, A.J., Mona, L.R., Lund, E.M., & Balter, R. (2019). #SaytheWord: A Disability Culture Commentary on the Erasure of ‘Disability’. Rehabilitation Psychology. Advance online publication. doi: 10.1037/rep0000258
Bogart, K. R., Rottenstein, A., Lund, E. M., & Bouchard, L. (2018). Who self-identifies as disabled? An examination of impairment and contextual predictors. Rehabilitation Psychology, 62(4), 553–562. doi:10.1037/rep0000132
Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70(3), 255-264. doi:10.1037/a0038636
Forber-Pratt, A.J. & Zape, M.P. (2017). Disability identity development model: Voices from the ADA-generation, Disability and Health Journal, 10(2), 350-355. doi: 10.1016/j.dhjo.2016.12.013
Taylor, C., (2017). “Finding ourselves: What we know about disability identity development.” Retrieved from https://vkc.mc.vanderbilt.edu/notables/2017/07/finding-ourselves-what-we-know-about-disability-identity-development/
Anjali Forber-Pratt is assistant professor of Human & Organizational Development and a Vanderbilt Kennedy Center Member.