Living with Distinction The Psychosocial Correlates of Genetic

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Living with Distinction: The Psychosocial Correlates of Genetic Disorder Related Stigma Sondra E. Solomon,

Living with Distinction: The Psychosocial Correlates of Genetic Disorder Related Stigma Sondra E. Solomon, Ph. D. Associate Professor of Psychological Science, College of Arts and Sciences Clinical Associate Professor of Psychiatry, College of Medicine University of Vermont Katie Elizabeth Arnone Undergraduate Research Assistant University of Vermont NEGC Annual Meeting April 9 th & 10 th 2015

Living with Distinction “You came so nearly perfect from the hand of nature that

Living with Distinction “You came so nearly perfect from the hand of nature that this slightest possible defect, which we hesitate whether to term a defect or a beauty, shocks me as being the visible mark of earthly imperfection” Hawthorne (1846)

“It’s Not About Me”

“It’s Not About Me”

Themes For Today What is Important to Know About You? What You Say and

Themes For Today What is Important to Know About You? What You Say and How You Say It: The Importance of Language Imperfection in a Perfect world? What Does Stigma Have To Do With It? As Time Goes By

What’s Important to Know About You Fun Fact Something Deeper

What’s Important to Know About You Fun Fact Something Deeper

Two Discussion Points What is the most outrageous question? What is the most supportive

Two Discussion Points What is the most outrageous question? What is the most supportive statement?

What You Say and How You Say It

What You Say and How You Say It

Definitions Distinction Impairment Disability Social Handicap Stigmatization

Definitions Distinction Impairment Disability Social Handicap Stigmatization

Impairment Disability Social Handicap

Impairment Disability Social Handicap

Stigma and Stigmatization Goffman’s Legacy (Goffman, 1963)

Stigma and Stigmatization Goffman’s Legacy (Goffman, 1963)

Stigma A person has an attribute that is devalued in a particular context.

Stigma A person has an attribute that is devalued in a particular context.

“It’s Not About Me”

“It’s Not About Me”

Imperfection in a Perfect World In most cultures physical perfection is the gold standard.

Imperfection in a Perfect World In most cultures physical perfection is the gold standard. A person’s competence, intelligence, and humanity is assessed by appearance.

Imperfection in a Perfect World We live in a culture that emphasizes physical perfection

Imperfection in a Perfect World We live in a culture that emphasizes physical perfection and individuals who possess visible attributes that are devalued occupy a special role in the culture and this role places them at a distinct social disadvantage.

Imperfection in a Perfect World The narrowly defined cultural appearance standard dictates who is

Imperfection in a Perfect World The narrowly defined cultural appearance standard dictates who is accepted and who gets cast aside.

Imperfection in a Perfect World Visible attributes that challenge the physical perfection ideal are

Imperfection in a Perfect World Visible attributes that challenge the physical perfection ideal are not tolerated.

Imperfection in a Perfect World When the visible attribute in question is determined by

Imperfection in a Perfect World When the visible attribute in question is determined by genetic or medical factors, the individual with the visible attribute may face significant challenges.

Imperfection in a Perfect World Undesirable attributes may be fixed and unquestionable and others

Imperfection in a Perfect World Undesirable attributes may be fixed and unquestionable and others less so. Transitory and Fixable Fixed and Presumed Permanent

Ablon’s Legacy The Nature of Stigma and Medical Conditions (Ablon 2002)

Ablon’s Legacy The Nature of Stigma and Medical Conditions (Ablon 2002)

Visible Distinctions and Stigma What happens when a distinction is visible, not easily concealed

Visible Distinctions and Stigma What happens when a distinction is visible, not easily concealed and has a genetic origin?

Visible Distinctions and Stigma The attribute is perceived by others to be atypical and

Visible Distinctions and Stigma The attribute is perceived by others to be atypical and non-normative.

Visible Distinctions and Stigma Individuals with visible distinctions must manage: their own appearance-related thoughts,

Visible Distinctions and Stigma Individuals with visible distinctions must manage: their own appearance-related thoughts, feelings and behaviors the reactions of perceived normal appearing others towards their appearance.

Visible Distinctions and Stigma When body integrity is disrupted social interaction is disrupted.

Visible Distinctions and Stigma When body integrity is disrupted social interaction is disrupted.

Why and When Do Visible Distinctions Pose Difficulties?

Why and When Do Visible Distinctions Pose Difficulties?

Visible Distinctions and Stigma When a visible attribute does not conform to a narrowly

Visible Distinctions and Stigma When a visible attribute does not conform to a narrowly defined metric of appearance acceptability, the bearer of that visible attribute may be at risk for: Social exclusion and Rejection Prejudice Discrimination By perceived normal appearing others

Visible Distinctions and Stigma Visible distinctions may remind the observer that the body is

Visible Distinctions and Stigma Visible distinctions may remind the observer that the body is fragile.

Visible Distinctions and Stigma Durnian, Noonan, and Marsh (2015) note: 150 ms to judge

Visible Distinctions and Stigma Durnian, Noonan, and Marsh (2015) note: 150 ms to judge a person’s appearance. Four major cues Averageness Symmetry Sexual dimorphism: Males have masculine features and females have feminine features Youthfulness

Visible Distinctions and Stigma What Does the Literature Report?

Visible Distinctions and Stigma What Does the Literature Report?

Visible Distinctions and Stigma Preponderance of the research is on children, adolescents, families and

Visible Distinctions and Stigma Preponderance of the research is on children, adolescents, families and emerging adults. Limited information is available on older adults. Published studies are hindered by Different methodological approaches Lack of psychometrically validated measures Descriptive approaches Small sample sizes

What About the Adults? Little children with genetic disorders grow up and age. As

What About the Adults? Little children with genetic disorders grow up and age. As we search for a cure we must offer strategies to cope with an often brittle, hostile and impermanent social environment.

What About the Adults? What are they talking about? Aren’t they over it by

What About the Adults? What are they talking about? Aren’t they over it by now?

What are some of the challenges for providers, families and older individuals (e. g.

What are some of the challenges for providers, families and older individuals (e. g. , 40, 50, 60+)

“It’s Not About Me”

“It’s Not About Me”

Somethings to Always Remember Be Kind to Each Other Never Be Mean Be Gentle

Somethings to Always Remember Be Kind to Each Other Never Be Mean Be Gentle with Yourself Remember to Breathe

Absolute Compassion is the Only Thing that Works

Absolute Compassion is the Only Thing that Works