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 SciencesClinical Associate Professor of Psychiatry, College of MedicineUniversity of Vermont

Katie Elizabeth ArnoneUndergraduate Research AssistantUniversity of Vermont

NEGC Annual MeetingApril 9th & 10th 2015

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”

Themes For Today

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

What’s Important to Know About You

Fun FactSomething Deeper

Two Discussion Points

What is the most outrageous question?What is the most supportive statement?

What You Say and How You Say It

Definitions

DistinctionImpairmentDisabilitySocial HandicapStigmaStigmatization

ImpairmentDisabilitySocial Handicap

Stigma and Stigmatization

Goffman’s Legacy(Goffman, 1963)

Stigma

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

“It’s Not About Me”

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 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 accepted and who gets

cast aside.

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 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 less so.

Transitory and FixableFixed and Presumed Permanent

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 and has a genetic origin?

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, feelings and behaviorsthe reactions of perceived normal appearing others towards their appearance.

Visible Distinctions and Stigma

When body integrity is disrupted social interaction is disrupted.

Why and When Do Visible Distinctions Pose Difficulties?

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 RejectionPrejudiceDiscrimination

By perceived normal appearing others

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:150ms to judge a person’s appearance.

Four major cuesAveragenessSymmetrySexual dimorphism: Males have masculine features and females have feminine featuresYouthfulness

Visible Distinctions and Stigma

What Does the Literature Report?

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 approachesLack of psychometrically validated measuresDescriptive approachesSmall sample sizes

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 now?

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

“It’s Not About Me”

Somethings to Always Remember

Be Kind to Each OtherNever Be MeanBe Gentle with YourselfRemember to Breathe

Absolute Compassion is the

Only Thing that Works