Problems, Prospects and Possibilities: The Quality of Life - PowerPoint Presentation

Slide1

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 USASlide2

Quality of Life = Quantity of Skills*

/

Sesha

*David

Hinsberg

. DO? BE? DO?Slide3

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?Slide4

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

LOVEJOYSlide5

Love, joy and the gift of just being able to beSlide6

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 productiveexperience a rich joy in being, even though life is not always joyful and sometimes painful and frightening.

Individuals whoSlide7

PROBLEMS

It’s not easy being normalSlide8

“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 philosopherSlide9

The philosopher’s norm

the

ability to be autonomous and

to act rationally and

reasonablyThese are presumed to be at core of their conception of “moral personhood.” Slide10

“The unexamined life is not worth living”

But

there was no question in my mind that

Sesha’s life

was worth living.Slide11

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 Slide12

PROSPECTS

The problem with normal and the prospects for normalizationSlide13

“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.Slide14

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.Slide15

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.Slide16

As a “judgement

of value”

The normal ≈ the desirable ≈ the

good

The nonnormal

≈ the undesirable ≈ the pathological Slide17

As a “judgment of reality”

Why should the statistical norm be desired?Slide18

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

AnomalySlide19

“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)Slide20

Two examples of the value-ladenness

of “judgments of reality”

The case of the

normal

lifespanThe case of the prevalence of deafness on Martha’s Vinegard

in the late 19th and early 20th centurySlide21

[

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 NietzscheSlide22

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

Fredrick NietzscheSlide23

We need not stifling norms but capacious onesSlide24

“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 VanackerSlide25

Values like language requires what Wittgenstein called “stagesetting

,

” and presumes a

community who share practices and purposes. Slide26

We build on the old normal to create a new normalSlide27

POSSIBILITIES

From

“the new normal” to the good life

Slide28

JoySlide29

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 distinctiveSlide30

The Valentine’s Card from Hell

You are so normal

Please be my valentineSlide31

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 youSlide32

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.”Slide33

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

Spinoza,

The Ethics

(

Definition II. Bk III). Slide34

Do? Be? Do? Dave Hinsberg’s

Lists

To Do List

Item

item

To Be ListItemItemItemItemItem

itemSlide35

Love, joy and the gift of just being able to beSlide36

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