Problems, Prospects and Possibilities:
The Quality of Life Of and With A
Persons With Severe Cognitive
Eva Feder Kittay
Disabilities.
Distinguished Professor of Philosophy
Stony Brook University, NY USA
Sesha
Quality of Life =
/ Quantity of Skills*
*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
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.
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 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 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 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.
“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
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 Valentine’s Card from Hell
The Paradox Dissolves:
We see the special when the normal is in
the backgound
“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
“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