problems, prospects and possibilities: the quality of life of and with a persons with severe...

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 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

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

It’s 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 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.”

“The unexamined life is not worth living”

But there was no question in my mind that Sesha’s life was worth living.

Some sadnesses that come with a child with severe cognitive disabilityShe 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

PROSPECTSThe problem with normal and the prospects for normalization

“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.

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 goodThe 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 Martha’s Vinegard in the late 19th and early 20th 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 instinct”—a 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 Isabel’s 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

POSSIBILITIESFrom “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 Valentine’s Card from Hell

You are so normal

Please be my valentine

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

You are so normal

Please be my valentine

There is no one like you

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 man’s passage from a lesser to a greater perfection.”

Spinoza, The Ethics (Definition II. Bk III).

Do? Be? Do? Dave Hinsberg’s Lists

To Do List Item item

To Be List Item Item Item Item 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, Isabel’s World