Disability stigma hinders employment experiences

Parkinson's patients share perspectives about stigma in the workplace

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Internalized, experienced, or anticipated stigma have significant impacts on employment experiences for people with Parkinson’s disease, according to a recent study.

In semi-structured interviews with patients, a researcher identified that patients felt hesitant to disclose their diagnosis in the workplace or ask for disability-related accommodations, often due to a fear of being seen as less capable or competent than others.

Patients also anticipated that should they need to look for a new job, they would face significant stigma-related barriers to finding employment, particularly as they grow older.

The study, “‘It just makes you more vulnerable as an employee’: Understanding the effects of disability stigma on employment in Parkinson’s disease,” was published in Chronic Illness.

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Research indicates that employment contributes to a higher quality of life for people living with chronic neurological diseases like Parkinson’s, helping to bolster both physical and mental health.

However, many patients may find it difficult to find or keep work. Indeed, people with Parkinson’s are more likely to be unemployed and to leave the workforce earlier than their healthy, age-matched counterparts.

It’s been suggested that disability-related stigma and discrimination might play a role in preventing people with Parkinson’s from seeking the accommodations they need to stay employed.

However, “the extent to which stigma acts as an employment barrier for this population has not previously been fully examined,” according to the study’s sole author, Kelsi Carolan, PhD.

Learning patients’ perspectives

To learn more, Carolan, an assistant professor in social work at the University of Connecticut, conducted interviews with 23 adults with Parkinson’s in the U.S., ages 42-65, seeking to specifically understand their perspectives about stigma in the workplace.

Of them, 15 were currently working and eight were not working or were retired.

In general, Carolan found that the interviews, “demonstrated how stigma and discrimination profoundly shape participants’ expectations regarding current and future employment options.”

Experiencing, or even anticipating, stigma, made patients reluctant to disclose their disease in the workplace and thus prevented them from receiving accommodations they needed.

In particular, participants described a fear of “being seen as less than” due to their Parkinson’s, Carolan wrote, and were concerned about a loss of respect, being pitied, or being seen as weak or less capable.

“I don’t wanna be treated differently,” one patient said in their interview. “I don’t want people to be like, well, let’s not give him this project because he has this disease and he may not be able to, he might shake too much when he’s presenting…That’s what I don’t want to happen.”

Generally, the scientist found that these fears manifested in a few different ways, including feelings of vulnerability to judgment, efforts to self-protect against a loss of respect, and strategies for presenting as healthy, or to minimize their symptoms at work.

Internalized stigma

Some hesitation to ask for accommodations at work among the interviewees appeared to stem from internalized stigma in which participants believed that their disability could be perceived as an excuse for laziness or undeserved special treatment by others.

A final theme emerged from the interviews in which participants seemed to be anticipating future stigma at their current or future workplace and were demonstrating a heightened sense of vigilance about it.

When asked to imagine a scenario where they had to apply for a new job with visible signs of Parkinson’s, most participants — regardless of their current employment status — indicated they expected to encounter discrimination that posed a barrier to employment, especially at an older age.

Of two participants who had left a previous position and were seeking a new one, both felt they experienced discrimination in the job market.

Overall, the findings, “highlight how anticipated and/or internalized disability stigma can act as an employment barrier by discouraging participants from requesting accommodations or further job seeking,” Carolan wrote.

Study limitations

The scientist noted, however, that the study was limited by the fact that most participants were working at the time of the interview, which could bias the findings. Moreover, most participants were white and male.

That the observed effects of stigma appeared so strong in a “majority privileged sample,” could have even bigger implications for Parkinson’s patients with “additional intersecting marginalized identities,” according to Carolan, who added it’s a topic worthy of more research.

The researcher also noted that while laws are in place in the U.S. to protect people with disabilities in the workforce, this type of discrimination can be hard to prove.

“It is essential that employment decisions are self-determined, not vulnerable to an employer’s willingness to provide accommodations or a hiring manager’s bias,” Carolan wrote, noting that new policies are needed to ensure thorough protections for people with disabilities.

“Health care professions and their respective professional societies must partner with the disability community in researching and advocating for legislative policies that will support the right to employment,” Carolan concluded.