Problems, Prospects and Possibilities: Cognitive Disabilities and the Quality of Life

Presented at Autism, Ethics and the Good Life Conference, British Academy, London, April 2, 2012

A Quandry

Quality of life ≄ quantity of skill

CLICK I begin this essay with a degree of perplexity. I have written about disability since the

late 1990’s, and my focus has been on what I know best: significant cognitive disability because

of CLICK my daughter, Sesha.

CLICK There are reasons to wonder if what I have to say will apply to autism. First, we

as a family not have had to deal with the behavioral disabilities that often come with autism.

Sesha has never had a tantrum, nor displays anger, and it does not seem that my daughter has had

to endure the sensory or perceptual distress that might lead to disruptive behaviors. Such distress

may significantly diminish the quality of life of both the autistic individual and the family, but is

not a consequence of the cognitive disabilities as such.

Second, while children with autism sometimes have difficulties with physical affection,

Sesha is extremely affectionate and it eases significantly the burden of her care.

Third, autism may not be an intellectual disability, even in cases in severe cases. Some

autists labeled “mentally retarded” have apparently been able to use communicative devices to

“speak” in full sentences, with a vocabulary and grammatical capability appropriate to their age.

Doubtless there may be “the clever Hans” effect but when a person uses a device and

manipulates it on her own, it is hard to conclude that there is fakery involved.

CLICK Yet the differences may not be as great as I assume. First, I know my daughter learns

only with difficulty if at all. But I don’t know with certainty how much my daughter understands

or knows. Secondly, cognitive disability will include disabilities of learning whether the

faculties of intellection are impaired or whether there are other barriers to learning, such as

perceptual difficulties.

Third, I have been told by people whose children with very different diagnoses that they

identify with what I have to say about Sesha. A very brilliant autist I know said she identified

with Sesha. She told me that group homes for intellectually disabled were her favorite place to

work—both for their structure and because she was able to read the residents in ways that

alluded neurotypical people. Perhaps there is something importantly similar in lives led outside

dominant cognitive norms.

Finally, parents of children with significant cognitive disabilities whatever their source

recognize each others sorrows and pain, as well as the special poignant love for our children. It

is as if the demanding work of caring for them well—ascertaining their needs, trying to penetrate

their subjective lives, knowing how much they will always need us—makes the normal

attachment between parent and child more intense. We know the terror that we might lose this

child. We have a different relationship to expectations that the child DO something. And while

acknowledging the hardships, lack of support, family breakups, we speak of the joy the child can

experience and the joy that the child brings to their lives.

Resolving the perplexity

Love, joy and the gift of just being able to be. CLICK Perhaps these cut through different

cognitive disabilities. I will speak of them at greater length later. Therefore I wager that the

views I offer are pertinent for individuals CLICK who may not be able to process their world and

experiences in ways that are typical; who experience a range of human possibilities that are only

partially available or not salient for others; who have a greater degree of dependence on the care

of another than those without the disabilities in question; who challenge the model of the human

that is inherent in the liberal ideal of the fully functioning, rational, independent and productive

agent; who can experience a rich joy in being, even though life is not always joyful and

sometimes painful and frightening.

Many who watch from the sidelines, see an abnormal child who is unlikely meet normal

hopes and expectations, and see a family condemned to struggled. Without wishing to diminish

the struggle of either child or the family, I want to try to convey how much quality can be

garnered in these lives.

Problems: Its not easy being (not) “normal”“Normal” is such a benign word-- when things are normal. It is a cutting one when

things are not. When used against an individual who fails to meet its norm, the word can feel

like a bludgeon, an excuse to accuse, condemn, exclude, or denigrate.

Our daughter Sesha as an infant was serene, but alert and she melted in my arms. I didn’t

know then that this lovely sensation was caused by her hypotonia, her lack of muscle tone. She

slept for long periods of time, and as a new mother I didn’t know whether to feel lucky or

worried. She was not a vigorous eater, but she was gaining weight. She did surprisingly few

tricks—we waited for her to roll over, to pick up her head, and meet the other small milestones

of early infancy. Today I realize that these should have been warning signs, but at the time I had

only baby books and I would rather think that Sesha had her own timetable. Those around me

who might have known, were reticent. When I inquired of my pediatrician why other children at

four months raised their heads so well, and Sesha couldn’t, he replied that she had a large head

which was heavier than most, a trait that was likely to run in our family. So, as per his advice, I

returned home and my spouse and I dutifully measured his head and concluded, that yes, his

head was pretty large. We were fools; the pediatrician was a coward. But oh how desperately we

new parents wanted our child to be normal.

Why is the desire for normality so powerful? Is having a good life predicated on having a

normal life? I will puzzle you perhaps, when I answer yes. Normality is necessary for a good

life. But much, we will see, depends on the account of normality.

One parent wrote in an op-ed page CLICK that having a child with a severe disability

makes every parent into a philosopher. What if the parent is already a philosopher? The

experience makes her a humbler philosopher. The op-ed writer was thinking about the need to

rethink what is meaningful in life and that is how my own thought was reoriented. But if you are

already a philosopher, you have to rethink the values and understanding of a human life that

philosophers both presume and extol.

Most philosophical theories of a life of quality presume CLICK a norm of humanity in

which a human beings possess the ability to act rationally and reasonably, to be autonomous. A

more capacious ideal is found in Martha Nussbaum’s list of capabilities. These include play,

closeness to the animal world, affinitive relationships, along with the more traditional capacities

cited by philosophers. But even she believes a “truly human life” (that is, a human life of good

quality) must include the ability to be a practical reasoner, that is someone who can reason about

morality, and other practical affairs of human life. Societies, she claims, have an obligation to

provide their inhabitants with the freedom to exercise all the capabilities, and even those with

severe cognitive abilities should be given every possibility of developing them, no matter the

cost. But what about those who cannot, no matter the effort or cost, acquire that capacity? Is

their life just tragic, as Nussbaum has contended?

That my child would never share with me the life of the mind, which I thought was what

gave life meaning, was extremely painful. CLICK “The unexamined life is not worth living” but

there was no question in my mind that her life was worth living, that I would do everything in

my power to preserve her life, protect her from any further harm and love her as the child of

mine that she is. This was foundational and brought to me the understanding that the values I

had held high above most all others, the love of reason, the capacity act rationally, the role of

reason in a worthy and moral life were not at the center of a life of meaning and value. Sesha’s

life without the ability to be a practical reasoner was not a tragedy. And my job was to make

sure it never became so.

The experience of parenting my disabled daughter was like Socrates’ gadfly, forcing me

to confront contradictions in my life and though. How can one repeatedly read and teach texts

that give Reason pride of place in the pantheon of human capabilities, when each day I interacted

with a wonderful human being who displayed no indisputable evidence of rational capacity?

How can one view language as the very mark of humanity, when this same daughter can speak

not a word? How can one argue that our moral worth as ends in themselves, or as persons, are

predicated on the capacity of reason when that would mean that my daughter is not a person, not

a being with moral worth? People who appear not to be able to exercise normal cognitive

capacities stand outside the circle of moral protection reserved for moral persons. They ought

not to be abused, but their abuse, from a moral standpoint (so the claim goes) is not morally

worse than the abuse of nonhuman animals.

One can argue, as some have, that as life is itself is of inestimable value, and being alive,

no matter how impaired is better than no life at all. But when we have a child with a disability

that takes her so out of the flow of normal life we seek more than “life is better than no life.” We

want her not merely to live, but to “have a life.” That is to say, a life worth living.

That her life did not have to become tragic was at first not so clear to us. The pain of

learning that our child would not live a “normal” life, was a hurt for her, and only secondarily for

us.

CLICK Some of our worries were well-warranted. She still must be protected at all

times. She has never learned to put her hands out to protect her face when she falls, and her front

teeth were smashed when a teacher’s aide in her classroom didn’t realize she should be strapped

into her chair. She now has a permanent bridge for front teeth. When we asked the dentist what

would happen if she fell again, he replied, “She can’t fall, period.” (or “full stop,” as you say in

England).

Even when secured in a chair, danger lurks. While strapped into her wheelchair, she

pulled a pot of freshly made hot coffee off a kitchen counter and scalded her thighs. She had

second-degree burns on both thighs and will always have significant scarring. She had another

permanent injury while in the safest place one can imagine. She was in her own bed, complete

with railings and bumpers and a cushion on the floor in case of a fall. One night, she must have

had a massive seizure during which her collar bone broke, and in the morning we noticed that her

arm was hanging oddly. That was the only way we could know that something was wrong. She

greeted us with her beautiful smile as she did every morning.

More frightening still is the possibility that someone will intentionally harm her and that

she is utterly powerless against malevolent intent. She cannot even tell us what has happened.

Our normal capacities are employed for self-protection so that we may guard against the fragility

of life. Sesha is entirely vulnerable for lack of these capacities.

The pain at the thought that she will never have a partner or her own family is equally

real. Many choose not to marry, or not to settle on a life partner. Some choose celibacy or chose

not to raise children. For Sesha, these will not be choices to forego. We have a persistent deep

sadness for her. I have seen clear signs of her being smitten by some young man, and while she

might get a smile and sweet word in return, that is a poor substitute for an intimate love. I have

seen Sesha look longingly at a baby. Would she want that for herself? I cannot know.

There is a sadness that she won’t have a work of her own in which she can derive

satisfaction and won’t know the pleasures of that sort of achievement. But these concerns, for

the most part, have faded. She gets satisfaction of having mastered a skill, or having some

degree of self-efficacy when she succeeds in directing us to satisfy a need or desire.

The ability to address the many difficulties that face having a child who is “not normal”

is seriously diminished when supports from the community and wider society are absent. The

ability to protect a child so vulnerable, to meet her needs and find ways “to give her a life”

depends not only on what the parents can provide, but on schools that are acceptable, on

resources for accessibility, services and medical care. It crucially depends on the social attitudes

and values. If she is not respected as a person whose worth is equal to that of any other, then

there will little to impel society to provide the resources necessary to make her life a good one.

In fact, without resources and support there are limited prospects for a good life for anyone,

much less those who are especially vulnerable. We parents cannot expect that our children will

grow up to be “independent and productive.” We have to be there for them as long as we are

alive and well enough. We have to do the best we can to provide for them when we can no

longer hold them. And that thought—that we will not always be there for them is perhaps the

most difficult thing of all.

CLICK Prospects: The problem with normal and the prospects for normalizationCLICK “The paradox is they identify 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.

If the problems with a life of cognitive disability begin with the frustrated desire for a

“normal child,” perhaps the prospects for a good life too have to address the question of

normality. This was surely the idea behind the idea of “normalization” first introduced in

Scandinavia and made widely known by the Canadian educator Wolf Wolfensberger. People

with cognitive disabilities were not to be viewed as different or “special” and so segregated and

treated like life-long children. Age appropriate activities and supported but normal settings

should allow them to function as normally as possible. The normalization movement called for

de-institutionalization and was behind the idea of inclusion, which has now taken hold as an

ideal, if not a full reality. Many of these efforts have immensely improved the lives of many.

But I want to point to a somewhat different process of normalization—one that allows for fluid

and flexible norms rather than maintain the norms and have disabled people find their place in

them.

CLICK George Canguilhem, the French historian of science spoke of two different

interpretations of the normal; either as a “judgment of reality” (e.g. a statistical frequency); or a

“judgment of value.” .1

When we take normality as a judgment of value, CLICK the idea that “we desire the

normal” amounts to saying that “we desire what is desirable,” and the claim that we desire

normality comes close to being a tautology. That which is desirable is that which we take to be

good, and the desirable elements of a good life are then the elements of a normal life. The

normal life, on this interpretation, defines the good life. Those who inhabit the space of the non-

normal do not occupy a value-neutral positions. They occupy positions marked as pathological,

not valued, not desirable, stigmatized.

1 Canguilhem, Georges. The Normal and the Pathological. Translated by Carolyn Fawcett. New York: Zone Books, 1991.

But what of the sense of normal that is a CLICK “judgment of reality”, describing a mere

statistical norm? What deviates from the norm are CLICK anomalies, or CLICK variations, but

they need not be CLICK pathologies. In this case, it is far more puzzling why we should desire

what is most common. Canguilhem suggests that the descriptive sense is not free of value

judments either. He writes: CLICK “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)

Consider the normal lifespan. In the US today it is 78 years of age. But were we to

receive improved nutrition, good day-to-day care, appropriate medical services and good safety

measures, we could move the normal lifespan closer to 100 years of age. The standard of care is

itself a product of social values, and it determines the statistical norm.

Here is a historically documented example: In the early late 19th century till the mid 20th

century Martha’s Vineyard became home to a large population of deaf persons. The reason was

two-fold: the first was biological, the appearance of a particularly prominent genetic feature in

some of the population. But the second was social: deaf individuals were neither marginalized

nor shunned. They had normal lives, married and bore children, thereby contributing to the

future population of the island. Being deaf was not a significant feature of people’s lives, and

non-deaf persons cheerfully learned and used sign language as well as spoken English. Had the

contemporary and prevalent norms of the wider culture prevailed on Martha’s Vineyard,

deafness would not have acquired the measure of normality that it did and would not have been

so statistically significant.

The point here is that even seemingly objective and descriptive statistical norms may

really reflect values. Thus the desire to fall within a statistical norm is less baffling. We desire

to be part of the statistical norm because the statistical norm already marks that which we value

and desire.

This relationship between the desirable and the statistically frequent throws a new light

on the intolerance of difference. Nothing is desirable if no one desires it. Part of what is so

scandalous (and I chose my language carefully) when disabled persons’ claim to have good lives,

is that the claim disrupts the seemingly self-evident desirability of the typical body. The

negative responses to statistical difference (shaming, threat, exclusion) in themselves offer us

compelling reasons to desire normality. The zones of safety and value are reserved for those

who conform. In this way, the norms are self-reinforcing.

These coercive features of the normal recall CLICK Nietzsche, who identified in humans

“the herd instinct”—a need to obey, to follow commands, to acquiesce to authority. Yet as

unattractive as the herd instinct looks in and to humans, herding is a feature of creatures who are

preyed upon. It keeps the herd from dispersing in ways that are dangerous to all. Sometime the

herd will sacrifice the least able to run or to obey in order to save itself.

While humans are predators, they are also prey; and as vulnerable beings, acting in

conformity with the group is both self-protective and may in the interest of everyone. Without

some standards of normality, we risk behaviors that can be massively destructive. Without

norms of health or proper nutrition, we lack means of assessing conditions that can and should be

ameliorated. We risk, in short, unleashing all the dangerous forms of full-fledged subjectivism,

relativism, and nihilism.

CLICK At the same time, we need ways to challenge stifling norms, those that inhibit the

flourishing of individuals and individuality. In an essay about the short life of her daughter

Isabel who was diagnosed with Tay Sachs disease when she was one year old, Sabine Vanacker

writes: “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.”

If we can put forward new values that can become the basis of new norms, the new

normal, with its own source of desirability, we can establish norms that are more capacious—that

embrace more varieties of flourishing.

The task is not without difficulties. CLICK Values like language requires what

Wittgenstein called “stagesetting.” But this “stagesetting” cannot be the work of an isolated

individual. It presupposes and requires a community who share practices and purposes. Just

where do we find such a community when conforming to the norm is the norm? As daunting as

the challenge is, we meet it all the time. We do so because we must. For those who are not

regarded as normal, the ability to lead satisfactory, even flourishing lives depends on the

expansion of normality so that we have some sense of stability, of normalization.

How do we do this? When a situation or person does not fit the “normal,” it is not

because all its norms are violated; some expectations of normality are met while others are not.

The abnormal situation I found myself in with the birth of a child diagnosed as severely to

profoundly cognitively disabled still involved much that was normal about motherhood. I too

had gone through pregnancy and childbirth just as most mothers had and I too had an infant to

nurture and love. Like any mother is supposed to, I was intent on doing as well by my child as

possible. She was for me first of all my daughter, not a disabled child. I had to attend her in her

particularity, and the particular features of her ability and disability were equally important. I,

like Sabine Vanacker, had to understand what was normal for her, and as a family we had to

create a normality that we could live with.

CLICK Possibilities: From “the new normal” to the good lifeThus starting from some fixed and common points, those who are anomalous in certain regards

can work to redefine the normal, to create their own sense of normality, and locate those from

whom they can find validation and support.

My spouse and I found those friends who accepted our family as a family. We dealt with

our extended family’s discomfort with our child and our situation. We had to gather the

resources, find the physicians, therapists, schools and teachers. Along with help from others, we

located our daughter’s baseline and her trajectory. We learned to appreciate small steps in

development she did make and took just as much joy in this as parents takes in watching a child

make A’s. Sesha was living her life as she experienced it—her life was normal for her. She

could enjoy her food (little gourmet that she was and still is), love the affection with which she

was showered, enjoy water play, giggle at silly children’s songs, pull her brother’s hair (and

watch him cry—my son absolutely insists this was an entirely intentional act on her part), and so

on.

We, her parents, refused the pity of those who could not understand, and we refused the

attempts of others to sanctify us, to call us “remarkable” or “saintly,” insisting instead that we

were only doing what we assumed a parent normally would do—care for, love, protect and foster

the growth of one’s child. But while we worked to socialize her as best we could, we also

worked (and still work) to socialize the surrounding community to accept her. We tried to extend

the sense of normality to our other child, and he likewise found his way to normalizing his birth

family by his choice of friends, his understanding of his role in the family, and his understanding

of what a sister can be.

In those early years, I had nothing acceptable to hang my imagination on when it came to

envisioning her as an adult. I worried that perhaps those times would be our halcyon days. The

differences between Sesha and her peers have grown more stark but those early years were not

the halcyon years. As parents we struggled far more than we do now. We have grown with

Sesha, learned from her and her centeredness, her composure, her strengths. Some of Sesha’s

interests have remained the same, some have matured. She is still a gourmet, very appreciate of

excellent food (you should see her go after anything dressed with white truffle oil, or how she

glues her eyes to a pastry from a speciality shop). Her tastes in music have matured with her,

and she no longer listens to Raffe and Barney, but to Bach, Beethoven, Schubert, Louis

Armstrong, and yes, Bob Dylan, Elvis Presley, and Michael Jackson. (Elvis and Jackson she

discovered on her own—the rest she picked up from us). One needs nothing more than to watch

this woman, who has no language, who is still incontinent, who cannot feed, dress or in any way

care for herself listen to a Bach partita, a Beethoven symphony, one of her beloved Broadway

musicals or best of all watch her thrill to the last movement of Beethoven’s Ninth, to discern the

riches of her life. Sesha is one of the privileged in a world full of misery, violence and privation

for millions—lives that are robbed of dignity and quality. To staunch the oozing of pity for this

abnormal severely to profoundly cognitively disabled woman, one has only to witness CLICK

Sesha and myself in a round of kisses and hugs, and see the joy that emanates from her. And this

is normality our household.

Nonetheless our sense of normality falls apart —if only for a moment—when we view

our child through the stranger’s gaze. And it needs to be recovered. It is worth noting what

exactly falls apart at these times. What falls apart is the vision of your child as the individual he

or she is and not as just someone with the impairment he or she has. What falls apart is seeing

yourself first as a parent and not first as a parent of a disabled child.

Here we come to a paradox at the heart of the normal. We want to be normal, but no one

wants to be loved because she is “normal.” The paradox dissolves when we understand that the

normal serves as a backdrop against which distinctive features of the individual emerge. When

you see another as “abnormal” you can’t see past that anomaly. The abnormality obliterates the

individuality. Without the appreciation of another’s individuality, there is no love. Without

love, the possibility of a good life immeasurably diminished.

The normal is not fixed, except if we decide it must be. Rigid norms close down the

possibility that those whose lives are different must be lives that are of inferior quality. Walter

Michel, a noted psychologist at Columbia University remarked as I spoke about my daughter that

she had very good survival skills. I must have looked at him as if I thought he was insane. But

he explained, Sesha knew how to make people love her, and that is the most important survival

skill of all.

Whatever capacity a person lacks, there are other people who can supply much that is

functionally necessary, there is the possibility that we can invent gadgets and equipment to

service the individual, and where nothing can compensate for the lost ability, there are other

abilities that can be found and developed that will allow for a rich life with filled with joy and

love and connectedness. We can do this when we are open to creating new and flexible norms

and normals, when we are willing to see a missing capability as the occasion for new

connections and new ways of experiencing the world that intensify the intact capabilities, which

gives rise to joy.

Severely cognitively disabled people make us look anew at what a “truly human life” is.

We come to ask: Granted that a society needs to be sufficiently productive to create enough

wealth to live a comfortable life, but why must such productivity be required by all? How much

of so-called productive activity is productive of anything really important? Are we as

independent as we pretend to be and what about independence is really of value? What is “full

functioning” given the vast differences among human abilities and potentials? We come to see

how overvaluing rational capacities overshadows equally or more important human possibilities.

Spinoza the supreme rationalist nonetheless gave joy a pride of place. Distinguishing pleasure

and joy, Spinoza said that while pleasure pertains to the body as it is conceived as body, “Joy is a

man’s passage from a lesser to a greater perfection.” (Definition II. Bk III). Even an examined

life, if it holds no joy, may not be a life worth living. With joy, life has a point, a reason to be, a

perfection of what it is to be.

One of the deepest sources of joy that I see in my very disabled child is her capacity to

be. Dave Hingsberg, an educator and writer on cognitive disability wrote of the moment when

he was facing death. CLICK He said he realized that his todo list was quite short, but his tobe

list was very long. Being able to be: quiet, good, happy, kind. To be, to derive joy just from

being alive and in the world is a rare gift.

I came to see this as I watched my aging mother. My mother was a doer: sewing clothes,

knitting, cooking, cleaning, caring for another and proud of all she could do. As she began to

lose her physical and mental capacities, she became increasing embittered and longed for death.

She needed care and refused it as she was supposed to be the carer, the doer. In the last few

months of her life we managed to get her some excellent caregivers and she began to acquiesce

and take pleasure from their caring and their company. She would go outside, sit on the seat of

her walker and look around her, enjoying seeing the plants and trees, the children playing, the

occasional breeze. For the first time in my life I saw my mother just enjoying being. As she

adapted to this last stage in her life, the resentment and bitterness left her. She faced her death

with equanimity. Sesha had the wisdom my mother only acquired in the last few months of a

long full life.

When I extol the virtues of being, I do not mean to foreclose the importance of skills, but

as Dave Hinsberg stresses the skills are to be in service of something the individual can be, to

what can increase her joy. Richard Grinker, reflecting on his autistic daughter concludes that we

should judge the value of a life not just what is can accomplish, but it what it brings into the life

of others. To love, to derive joy from life, to learn the wonder of being, these are the lessons my

daughter have taught me about what it means to have a life of quality, and I humbly convey them

here.

Eva Feder Kittay

Department of Philosophy

Stony Brook University