CORVALLIS, Ore. - Experiencing stigma, the severity of a disability and a person's age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research from Oregon State University shows.
"Roughly 15 percent of the world's population has some kind of disability but just a fraction of those people actually identify themselves as people with disabilities. Disability identity is a critical step in accepting a disability and helps to reduce the stigma surrounding the label," said Kathleen Bogart, an assistant professor of psychology in the College of Liberal Arts at Oregon State University.
Those who self-identify are also more likely to develop pride in their disability, a shift in thinking that can help build resilience and change public attitudes about the "disabled" label, said Bogart, an expert on ableism, or prejudice about disabilities, whose research focuses on the psychosocial implications of disabilities.
"The challenge with disability as a label is that it's so mired in stigma that people don't want that label," she said. "Can we reduce the stigma and reframe the label as a neutral label that is just useful as a category, like male or female? Or taking it even further, can we shift the label to the point where people have pride in that label?"
Bogart explored issues around disability self-identification and disability pride in two new studies published recently in the journal Rehabilitation Psychology.
The first study examined who is most likely to self-identify as disabled. For the study, about 700 people over age 18 completed an online survey that asked them to identify health conditions they had by checking boxes, or if their condition was not listed, filling in a box. Among the most common impairments were allergies, anxiety, depression, migraines, back injury or pain, attention-deficit/hyperactivity disorder, respiratory disease, hypertension and chronic pain.
Participants also were asked to rate characteristics of their health condition, such as whether it affects daily life, how often it causes physical pain and how often it is noticeable to other people. In addition, they completed a questionnaire about whether they experienced stigma and discrimination because of their condition. They were also asked whether they identify as a person with a disability. Only 12 percent of people with a health condition agreed or strongly agreed that they were a person with a disability.
The researchers found that experiencing stigma, along with severity of the impairment, were the biggest factors influencing whether someone with a disability identified that way.
"The finding regarding stigma was a really powerful one," Bogart said. "It supports the idea that the concept of disability is primarily a social construct, developed by society's reaction to that impairment. It's not just the physical impairment. It's the way people treat you and the way society builds an environment that does or does not include you."
The study results suggested that severe impairments lead to greater stigma, which increased the likelihood that people self-identified as disabled.
In the second study, the researchers looked further at the role disability pride plays in overall wellbeing for people with disabilities. Developing pride in the disability - and rejecting the stigma of society on whole - shows promise as a way to protect against stigma and build self-esteem, Bogart said.
"Little is known about the good things that might come with embracing a disability identity," Bogart said. "We believe developing pride may offer some protective effects for people with disabilities who experience stigma."
Using the same set of more than 700 survey participants from the previous study, but looking at additional questions, the researchers analyzed factors that influence whether someone has pride in their disability. They found that disability pride tended to be more prevalent among those who experience stigma, those who have strong social support and people of color. They also found that people experiencing greater stigma seemed to lead to more pride, and greater pride was associated with greater self-esteem.
"Disability pride is still a rare thing," Bogart said. "Most disabilities are invisible and people have to choose to identify with them. Many people hide their disabilities to avoid discrimination. But not identifying also perpetuates the stigma that disability is undesirable. Developing disability pride seems to reduce protect self-esteem against the negative effects of stigma. It's a really valuable protection for people with disabilities.
"A logical next step for the research would be to develop interventions designed to boost disability pride among people with disabilities and at a policy level, with the goal of improving overall well-being and reducing stigma."
Social support within the disability community could be bolstered through social groups and mentoring. At a policy level, political activism, media representation featuring disability pride and disability pride events may support pride development.
Co-authors of the self-identification study are Adena Rottenstein of Eastern Michigan University; Emily M. Lund of Boston University; and Lauren Bouchard of Purdue University. Rottenstein and Lund are also co-authors on the pride study. The research was supported by a research grant from the OSU College of Liberal Arts.