How Important Is It to Build a Positive Disability Identity?
Let living with a disability be a source of value, meaning, and pride.
Posted Dec 06, 2016
Reading the recent obituaries about Janet Reno, it seems that she may have grappled with her disability identity. This phrase refers to the affirmation – rather than denial - of one’s reality as a person with a disability and incorporating this group membership into one’s identity. Although Reno, President Bill Clinton’s attorney general, died of complications of Parkinson’s this past October 31st, initially she refused invitations to be a spokesperson for the disease and according to The New York Times on November 7, 2016, “refused to let Parkinson’s define her.” Eventually, however, she worked to raise awareness of Parkinson’s and remained active both privately and publicly, continuing with activities such as patient advocacy, kayaking and appearing on Saturday Night Live, that were and were not related to her illness.
President-elect Donald Trump appears to assume that disability should be a negative part of identity. As Michelle Obama stated in a speech on October 20, 2016, “Maybe it’s easy for him to mock people with disabilities because he’s unable to see their strengths and contributions.” When I was thinking about my first blog post, I planned that it would consider Hillary Clinton’s likely plans to help Americans with disabilities. So instead, I place as role models for positive disability identity Janet Reno and Tammy Duckworth, former U.S. representative and now the recently elected U.S. senator from Illinois, and her election opponent Senator Mark Kirk. Duckworth is a veteran who lost both legs when the helicopter she was co-piloting was shot down in Iraq. Her opponent in that race was Senator Mark Kirk, whose left side is partially paralyzed due to a stroke and often uses a wheelchair. A long way from the era when politicians like Franklin D. Roosevelt and John F. Kennedy tried to hide their disabilities from the public, the candidates publicly discussed their disabilities and argued that they were evidence not of weakness but of their ability to overcome challenges.
Interestingly, psychologist Kathleen Bogart published research in 2015 that found that disability identity is associated with lower depression and anxiety in adults with multiple sclerosis and mobility impairment. In her work, she explains that affirmation of one’s disability identity typically involves acceptance of disability as part of one’s sense of self. Social support from the disability community, stigma reduction through disability pride, and making meaning from one’s disability experiences through disability advocacy are also important. I know through my own research and family experiences that pretending or striving to be “just like everyone else” closes the door to accepting therapeutic help and services and often confuses those whom one wants to impress. As psychologist Rhoda Olkin wrote in 2009, and the three public officials have showed us, living with a disability can be a source of value, meaning and pride, rather than a flaw or weakness.
So what can we do to help the ones we love develop a positive disability identity? First, we can let them know:
1. That we love them unconditionally no matter their disability, its symptoms and manifestations.
2. That we may never know how it feels to experience a particular disability but we can try to empathize with the frustrations, limitations, and joys.
3. That we can laugh with them – not at them - because it is likely that there will be moments of ridiculousness (yet we will not ridicule).
4. That it is beneficial to meet persons with similar disabilities through support and advocacy groups.
5. That there are many personal memoirs, such as those by Shane Burcaw, Temple Grandin, and Kay Redfield Jamison, as well as Ted Talks, such as those by Stella Young, Daniel Kish, and Phil Hansen, that can help one learn to form a positive personal identity or support another person’s.
Bogart, K. R. (2015). Disability identity predicts lower anxiety and depression in multiple sclerosis. Rehabilitation Psychology, 60, 105-109.
Garateix, M., & Robles, F. (2016, Nov. 7). Janet Reno refused to let Parkinson's define her. http://www.nytimes.com/2016/11/08/us/janet-reno-parkinsons.html
Olkin, R. (2009). Disability-affirmative therapy. In Marini & M. Stebnicki (Eds.), The Professional Counselor's Desk Reference (pp. 355-370). New York: Springer.