Career Spotlight: Dr. Kathleen Bogart discusses disclosure and interviewing tips

Navigating the interview process can be nerve wracking for anyone, but for people with Moebius syndrome, it can be even more challenging.?

Dr. Kathleen Bogart, researcher and Associate Professor of Psychology at Oregon State University, recognized the need for more research about how people with Moebius can better navigate this process.

She was born with Moebius syndrome and has a Ph.D. in Experimental (Social) Psychology, a Master’s Degree in Social Psychology and a Bachelor’s Degree in Psychology.?

Kathleen joined the Moebius Syndrome Foundation Board of Directors in 2010, and transitioned to serving on the Scientific Advisory Board in 2018.?

The question of how to navigate the interview process came up a lot in the Moebius community, so she decided to research it.

Funded by the Moebius Syndrome Foundation, her research focused on people with any sort of facial difference.?

Kathleen was interested in the general process of disclosure (explaining facial paralysis or difference to other people). She studied the process by which people made decisions about talking about Moebius in a variety of contexts, including jobs and in their daily lives.?

She found a variety of styles people with Moebius took to navigate disclosure.??

Generally, she found people were compelled or forced to disclose, or they felt they had personal choice and autonomy.??

Others often notice the facial difference, but don’t understand what it means. People with Moebius could feel forced if other people stared, seemed preoccupied by their difference, or asked uncomfortable questions.?

Employers are not allowed to ask someone about their disability, but Kathleen found that some employers did anyway.?

Some people had family members who recommended they not talk about having Moebius.??

She also found that most people with Moebius did ultimately talk about their facial difference at work, either during the job interview or after they were hired. That approach was also associated with more positive mental health outcomes, like lower anxiety and depression, and higher self-esteem.??

Kathleen recommended that people who do want to disclose during an interview keep it simple and short, no more than a couple of sentences. Something like, “I have a condition that involves facial paralysis. I just wanted to let you know just in case you got confused about whether or not I was excited to meet you and excited about the job.”?

She said people will often find a way to end on a positive, like having this condition has made me a really hard worker, a really empathic person or really passionate about helping others.?

As far as deciding whether or not to disclose during an interview, she said people tended to feel it out, whether or not it felt safe to disclose, and if the employer seemed open to it.?

People with Moebius who have speech difficulties might be worried about the employer not understanding them when they are speaking. Some people might not use speech at all and use sign language or other communication devices. If they feel they would be more effective in communicating that way, Kathleen said they should reach out to the employer before the interview and ask for a reasonable accommodation. They can request an ASL interpreter or that they be allowed to use their AAC (Augmentative and alternative communication) as their preferred communication method.?

For those who prefer to use speech that might not be always recognizable to a stranger, she said that person might want to, either before the interview, or at the beginning of the interview, focus more on how Moebius affects speech. They could say something like, “I have facial paralysis. It affects my speech, so before you get to know me, you might have trouble understanding what I’m saying, Please ask me to repeat myself if you don’t understand,” They might want to emphasize something like, “Once you get to know me, you’re not going to have any trouble understanding me, but since we just met, you might have to ask me to repeat myself.”?

Kathleen said the real key is that the person with Meobius is understood in whatever way they are comfortable with to make sure they are able to communicate their qualifications. She feels there should be no judgment about if they communicate with ASL or via writing.?

She recommends people with Moebius be as open as possible to repeating themselves, and employers be open and comfortable asking people with Moebius to repeat themselves instead of smiling and nodding and pretending they understand.?

Kathleen said she personally has tried it all at various points throughout navigating her career journey. When she was younger, she wouldn’t mention having Moebius, and it usually went OK. She got some jobs she was qualified for, and she didn’t get some jobs she was qualified for.?

She said one time she actually got feedback from the employer that it was because of having Moebius that she didn’t get the job. She said at that time she didn’t know her rights under the ADA (Americans with Disabilities Act), and looking back at it, it was one of the most blatant forms of discrimination she had ever heard of. She said she wished she would have been a better activist at that time and did more about it.?

As Kathleen continued her career, she became more open about talking about Moebius, partly because of her own personal identity and acceptance journey and also her career had become more and more related to Moebius, so it came up more naturally in the conversation.?

Some of her students she teaches at Oregon State University hear about her through the research she has published about Moebius, so they are already aware she had Moebius. For the students who are not aware, she talks about having Moebius on the first day of class.?

All the classes she teaches are psychology, so she said it’s very much related to facial difference and facial expressions. She explains to them that having Moebius made her interested in going into the field of psychology because of how Moebius affects communication being a core area of psychology.?

Kathleen said the Moebius Syndrome Foundation community, especially the Home for the Moebius Community Facebook group, is a crucial resource for getting help navigating career related topics as well.???

Kathleen also has a blog on Psychology Today called “Disability Is Diversity: What everyone should know about ableism”. She and Tara Lewis, another member of the Moebius community, co-wrote articles about how employers can create equitable interviews for candidates and advice for people with facial differences facing job interviews.?

In addition, Kathleen is a disability and rare disease advocate and speaks at international events to academic, general and stakeholder audiences.?

In January 2022, she did a TEDx talk about the psychology of ableism.?

Kathleen also co-founded DARN (Disability and Advocacy Research Network), an organization for folks with disabilities in psychology at any career stage (including students). They also welcome allies and those who study, work with, and/or teach about disability.?

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Kari Storm is a freelance writer and an individual with Moebius syndrome.