a discussion about the social psychology of moebius syndrome · overview living with moebius...
TRANSCRIPT
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A Discussion about the Social Psychology of Moebius Syndrome
Kathleen Rives Bogart, PhD
Assistant Professor of Psychology
Oregon State University
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Overview
Living with Moebius syndrome
Others’ impressions of people with Moebius
Facilitating interaction
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LIVING WITH MOEBIUS SYNDROME
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Focus groups on Moebius syndrome
12 adults with Moebius
10 teenagers with Moebius
Discussed social experiences
Bogart, K.R. (2014). “People are all about appearances”: A Focus group of teenagers with Moebius syndrome.
Journal of Health Psychology. Advance online publication.
Bogart, K. R., Tickle-Degnen, L., & Joffe, M. (2012). Social interaction experiences of adults with Moebius
syndrome: A focus group. Journal of Health Psychology, 17(8), 1212-1222.
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Social engagement
“Moebius is the first thing that people notice.”—Adult with Moebius
“You talk to someone for the first time, they might look at you kind of strange and wonder why you talk like that, why you look like that.” –Teen with Moebius
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Social engagement
“I figured out that once you’ve known people for a long time they just don’t notice your Moebius Syndrome anymore … because your personality overshadows everything else physically … When you first meet someone, all they have to go off of is appearance … but once they find more things about you then, like, that’s not as significant cause they have other things to replace it.”--Teen
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Social engagement
Proactively manage others reactions: “You’re trying to help them feel more comfortable
with who you are. I just remind myself when I’m meeting someone new that maybe they haven’t seen Moebius before and maybe they’re not sure of your intelligence, so you want to stamp that out straight away … You’re always telling jokes and that is so important to help people relax. I think the other thing is being confident in yourself.”--Adult
“Don’t be extremely shy because I think it makes you more vulnerable to being teased.” --Teen
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Compensatory expression
What helps you to express yourself?
Voice
Gestures
Touch
Humor
Clothing
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Resilience
“It’s good in some ways to have Moebius because it makes you a better person. And I like it because I get to go to the Moebius conference and I get to meet new people.”--Teen
One teen joked that “Moebius might be the next stage of evolution of people” because it made him a better poker player.
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Prejudice/discrimination
“Evidence shows that people with Moebius can get hired into jobs and so obviously it’s not a huge negative …. People can do well in their jobs and there are plenty of people at this conference who show that. I do think that it has happened to me that sometimes Moebius can affect how far you can go.”--Adult
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Being Misunderstood
“This one joke I always use is that two of the hardest sounds for us to make is the M sound and the B sound. But what do they call the thing that we have? Moebius, the hardest thing for us to say.”--Adult
“All the time people say, ‘Are you joking? Are you serious?’”--Adult
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Being Misunderstood
In response to a boy asking what happened to him, the teen explained about Moebius.
The boy said, “Oh, I thought it was serious like you were gonna die. Well, you’re really nice and people shouldn’t judge you for that.”
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Public Awareness
“It would be cool if there was a Moebius parade … people holding banners saying “Moebius Syndrome rocks!” … advertising it like on TV to make us more recognized. Cause then maybe people that don’t know if they have Moebius might figure out that they have it.”—Teen
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Interactions generally positive
Teenage years the hardest
Struggle to be understood:
Speech difficulty
Lack of facial expression
Lack of public awareness
Prejudice
Focus Group Conclusions
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How does Moebius affect social interactions?
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Do you explain Moebius to others?
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How does Moebius affect getting a job?
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Is Moebius a disability?
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Disability
Legal protections
Why is disability a bad thing?
Natural part of human diversity
Disability community!
Disability pride!
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Abbreviated ADA definition
Disability is defined as: a physical or mental impairment that substantially limits one
or more major life activities. Does not apply to impairments that are transitory, with an actual or expected duration of 6 months or less.
• major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.
OR being regarded as having such an impairment
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OTHERS’ IMPRESSIONS OF PEOPLE WITH MOEBIUS
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First impressions
Universal communication
Thin slice studies find that people can accurately recognize emotion and personality from video clips as short as 5 s.
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First impressions of people with facial movement disorders
Videos: people with facial paralysis or Parkinson’s disease as short as 20 s.
Perceivers: healthcare practitioners, students, older adults
Design: perceivers view videos and rate impressions
(Bogart, Tickle-Degnen & Ambady, in press; Hemmesch, Tickle-Degnen, & Zebrowitz, 2009; Tickle-Degnen & Lyons, 2004)
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First impressions
Findings: when rating people with low facial expressivity, perceivers:
have less desire to approach & form relationships
thought they were less happy and extraverted
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First impressions
Healthcare practitioners experienced with facial movement disorders had same biases
Hard to override natural human tendency
People who used compensatory expression were rated as happier
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Have people formed inaccurate impressions about you or your child?
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FACILITATING INTERACTION
For the person with
Moebius: social skills
training
For the perceiver:
sensitivity training
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Social Skills Workshop for People with Moebius
Social skills study for teens at this conference
Check website for updates
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Training people to see beyond facial paralysis
67 undergrads assigned to:
Education
Control
Thin slice extraversion rating study
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Summary of education
Symptoms of facial paralysis
The perspective of a person with facial paralysis: “Try as I might, I can’t move my face to reflect my state of mind. I often appear unfriendly on the outside while actually smiling on the inside.”
Override tendency to base impressions on face
Focus on compensatory expression
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Training people to see beyond facial paralysis
Participants in the education condition rated people with facial paralysis as more extraverted
Next steps: informational pamphlet for healthcare practitioners and educators
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What do you think can be done to improve interactions?
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Conclusions
Social functioning is a challenge for people with Moebius
People with Moebius are often resilient and have strategies for social success
People interacting with them can learn to look beyond the face to improve their impressions
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Acknowledgements
Collaborators:
Nalini Ambady
Amanda Hemmesch
Linda Tickle-Degnen
Matthew Joffe
David Matsumoto
John Michael
Rhonda Robert
Karen Schmidt
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Thanks to the Moebius Community!
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Contact
To learn more about my research: http://liberalarts.oregonstate.edu/users/kathleen-bogart
Email: [email protected]