1. 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

2. “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)

3. “It’s Not About Me”

4. 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

5. Fun Fact Something Deeper

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

8. Distinction Impairment Disability Social Handicap Stigma Stigmatization

9. Impairment Disability Social Handicap

10. Goffman’s Legacy (Goffman, 1963)

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

12. “It’s Not About Me”

13. In most cultures physical perfection is the gold standard. A person’s competence, intelligence, and humanity is assessed by appearance.

14. 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.

15. The narrowly defined cultural appearance standard dictates who is accepted and who gets cast aside.

16. Visible attributes that challenge the physical perfection ideal are not tolerated.

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

18. Undesirable attributes may be fixed and unquestionable and others less so. Transitory and Fixable Fixed and Presumed Permanent

19. The Nature of Stigma and Medical Conditions (Ablon 2002)

20. What happens when a distinction is visible, not easily concealed and has a genetic origin?

21. The attribute is perceived by others to be atypical and non-normative.

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

23. When body integrity is disrupted social interaction is disrupted.

25. 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

26. Visible distinctions may remind the observer that the body is fragile.

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

28. What Does the Literature Report?

29. 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

30. 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.

31. What are they talking about? Aren’t they over it by now?

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

33. “It’s Not About Me”

34. Be Kind to Each Other Never Be Mean Be Gentle with Yourself Remember to Breathe

35. Absolute Compassion is the Only Thing that Works