Eva Feder Kittay Distinguished Professor of Philosophy Stony Brook University, NY USA

1. Problems, Prospects and Possibilities: The Quality of Life Of and With A Persons With Severe Cognitive Disabilities. Eva Feder Kittay Distinguished Professor of Philosophy Stony Brook University, NY USA

2. Sesha / Quality of Life = Quantity of Skills* *David Hinsberg. DO? BE? DO?

3. Why I am not qualified to speak about autism • Sesha has no difficult or disruptive behaviors • Sesha loves physical contact and physical affection • Not sure: Is autism itself ever an intellectual disability?

4. Why I may be • There is much I do not know or understand about my daughter’s cognitive abilities, including intellection. • Cognitive disability is broader than “intelligence” and includes various sources of learning disability • There appears to be a common bond between parents and their children regardless of the form of cognitive disability • DEALING WITH THE NON-NORMAL • LOVE • JOY

5. Love, joy and the gift of just being able to be

6. Other points of contact Individuals who • process their world and experiences atypically; • experience a range of human possibilities only partially available to or not salient for others; • have a greater degree of dependence on the care • challenge the model of the human as fully functioning, rational, independent and productive • experience a rich joy in being, even though life is not always joyful and sometimes painful and frightening.

7. PROBLEMS It’s not easy being normal

8. “Having a child with a severe disability makes every parent into a philosopher.” What if the parent is already a philosopher? You become a humbler philosopher

9. The philosopher’s norm the ability to be autonomous and to act rationally and reasonably These are presumed to be at core of their conception of “moral personhood.”

10. “The unexamined life is not worth living” But there was no question in my mind that Sesha’s life was worth living.

11. Some sadnesses that come with a child with severe cognitive disability She is so vulnerable. Can she be safe? She will not be able to form a family or have an intellectual life or a work of her own

12. PROSPECTS The problem with normal and the prospects for normalization

13. “The paradox is they identify is that a child who doesn’t fit in has to be seen as somehow impaired in order to justify an effort to normalise him” Roy Richard Grinker, Isabel’s World, p.318.

14. The “Normalization Movement” A move away from the medical model Bringing the lives of the cognitively impaired into line with what is thought of as a normal life Including people with cognitive disabilities in the lives and activities of the nondisabled Wolfensberger, W. (1972). The principle of Normalization in human services. Toronto: National Institute on Mental Retardation.

15. Two senses of normal • 1. An objective “judgment of reality” (e.g. a statistical frequency); • 2. a subjective “judgment of value.” . Canguilhem, Georges. The Normal and the Pathological. Translated by Carolyn Fawcett. New York: Zone Books, 1991.

16. As a “judgement of value” The normal ≈ the desirable ≈ the good The nonnormal ≈ the undesirable ≈ the pathological

17. As a “judgment of reality” Why should the statistical norm be desired?

18. Two senses of normal 1. “Judgment of reality” The normal as what is statistically frequent 2. “Judgment of value.” The normal as what we value. Variation Anomaly Pathology

19. “A human trait would not be normal because frequent but frequent because normal, that is, normative in one given kind of life” (Canguilhem 1991, 160)

20. Two examples of the value-ladenness of “judgments of reality” The case of the normal lifespan The case of the prevalence of deafness on Martha’s Vinegard in the late 19th and early 20th century

21. [A]t all times, as long as there have been human beings, there have been human herds and very many who obeyed compared with very few who were in command; [obedience] was the trait best and longest exercised and cultivated among men. [I]t has become an innate need.” Fredrick Nietzsche

22. “The herd instinct”—a need to obey, to follow commands, to acquiesce to authority. Fredrick Nietzsche

23. We need not stifling norms but capacious ones

24. “What normality was for her” • “Knowing Isabel, our perception of that abstract concept ‘quality of life’ has changed and become more fluid. In our conversations with nurses and doctors they frequently pointed out that we, the nurses and carers who knew her well, were the specialists in Isabel’s case and that we knew what normality was for her.” • Sabine Vanacker

25. Values like language requires what Wittgenstein called “stagesetting,” and presumes a community who share practices and purposes.

26. We build on the old normal to create a new normal

27. POSSIBILITIES From “the new normal” to the good life

28. Joy

29. The paradox of normal • We all want to be normal • No one wants to be loved because they are normal • Everyone wants to be loved because of what is distinctive

30. You are so normal Please be my valentine The Valentine’s Card from Hell

31. You are so normal There is no one like you Please be my valentine The Paradox Dissolves: We see the special when the normal is in the backgound

32. “Sesha has such good survival skills. She knows how to make people love her and that is the most important survival skill of all.” Walter Michel, Personal Discussion

33. “Joy is a man’s passage from a lesser to a greater perfection.” Spinoza, The Ethics (Definition II. Bk III).

34. Do? Be? Do? Dave Hinsberg’s Lists • To Do List • Item • item • To Be List • Item • Item • Item • Item • Item • item

35. Love, joy and the gift of just being able to be

36. We should judge the value of a life not just what is can accomplish, but the what it brings into the lives of others Richard Roy Grinker, Isabel’s World