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

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

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?

Why I may be There is much I do not know or understand about my daughters 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

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

Other points of contact 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. Individuals who

PROBLEMS Its not easy being normal

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

The philosophers 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.

The unexamined life is not worth living But there was no question in my mind that Seshas life was worth living.

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

PROSPECTS The problem with normal and the prospects for normalization

The paradox is they identify is that a child who doesnt fit in has to be seen as somehow impaired in order to justify an effort to normalise him Roy Richard Grinker, Isabels World, p.318.

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.

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.

As a judgement of value The normal the desirable the good The nonnormal the undesirable the pathological

As a judgment of reality Why should the statistical norm be desired?

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. Pathology Variation Anomaly

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)

Two examples of the value-ladenness of judgments of reality The case of the normal lifespan The case of the prevalence of deafness on Marthas Vinegard in the late 19 th and early 20 th century

[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

The herd instincta need to obey, to follow commands, to acquiesce to authority. Fredrick Nietzsche

We need not stifling norms but capacious ones

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 Isabels case and that we knew what normality was for her. Sabine Vanacker

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

We build on the old normal to create a new normal

POSSIBILITIES From the new normal to the good life

Joy

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

The Valentines Card from Hell

The Paradox Dissolves: We see the special when the normal is in the backgound

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

Joy is a mans passage from a lesser to a greater perfection. Spinoza, The Ethics (Definition II. Bk III).

Do? Be? Do? Dave Hinsbergs Lists To Do List Item item To Be List Item item

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

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, Isabels World