The Useless Tree

From seven years of archives: Disability and Social Responsibility

So, yesterday was my seven year blog anniversary.  That's pretty good.  Over sixteen hundred posts and still going.  I'm not one to wallow in the past; I don't usually bring posts back from the archives.  But I think I will make an exception in the coming weeks.  There's a lot of stuff there, some of which might provide some basis for conversation now.  

On July 21, 2005, I wrote "Disability and Social Responsibility."  It starts like this:

It has long been known that children who are afforded heroic interventions to overcome prematurity - and sometimes that prematurity is induced to address some existing physical anomoly - will likely face serious and continuing health problems.  But we tend to focus, both as individuals and as a society, on the save-the-baby heroism and to forget about how to support the family over the long term.  I think we should, in general, save the babies, but that we need to take more seriously our social responsibility to provide on-going care for the disabled children who are saved.  And I think Confucius agrees with me.

And it ends like this:

Here, finally, is where Confucius comes in.  Not in that he is an old liberal Democrat ready to revive old New Deal policy commitments.  But because he speaks to us more personally about why we should be willing to give something to those who need it.  Quite simply, he is a constant counter to our selfish impulses, reminding us that we find ourselves not in the pursuit of our personal preferences, but in the fulfillment of the needs of others.  Here he is:

As for Humanity, if you want to make a stand, help others make a stand, and if you want to reach your goal, help others reach their goal.  Consider yourself and treat others accordingly: this is the method of Humanity.

Read the rest if you're interested...

Her life is not a tragedy: Zhuangzi understands this

A nice piece in yesterday's Boston Globe by Beverly Beckham about her grandaughter, who has Down Syndrome, and how she and her family came to see the beauty in this girl's life.  It is a familiar tale, to those of us who have lived this sort of story, of the initial time of fear and dread, not knowing what the meaning of disability might be.  And then the gradual realization that, as Zhuangzi reminds us, all things move as one in Dao (道通為一). 

Beckham comes to the same understanding I came to with Aidan:

Everybody’s life has challenges. Lucy’s has a few more. But what Lucy’s life is is not a tragedy. What Lucy’s life is is not a burden. What Lucy’s life is is not what we were led to believe it would be: sad and joyless and not worth living.

Her life is full of joy. Lucy is a happy child. She makes our lives worth living.

She is not the child we imagined. Nine years ago we cried over this. Sometime we still cry. But not because Lucy isn’t who we want. She is exactly who we want.

We cry because Lucy is sweet and good and imaginative and kind and funny and caring, and the world doesn’t see any of this. The world sees only a little girl with Down syndrome.

We cry now, not because of Lucy, but because of the world.

If we look at people simply as they are, not in comparison to some nonexistent ideal or some set of preexisting expectations, then we see them in their individual fullness and completeness.  Each person has their place in Dao and, in that, they are all the same, of equal presence and value.  And if we fail to see each person in their individual fullness and completeness, then we fail to apprehend the world.  Zhuangzi tells us:

If you see the world in terms of difference...there are liver and gall bladder, there are Ch'u lands and Yueh lands.  But seen in terms of sameness, the ten thousand things are all one.  If you understand this, you forget how eye and ear could love this and hate that.  Then the mind wanders the accord of Integrity.  And if you see the identity of things there can be no loss.

There can be no loss.  That was an understanding that helped me learn from Aidan.   We can choose to see the world in terms of difference or in terms of sameness, and when we choose the latter we open ourselves to seeing the value of all things.

A Daoist Turn on Disability

A beautiful piece (thanks Laura for sending it along!) in The Chronicle of Higher Education by a father, an English professor, reflecting upon the life of his 10 year old son, who is disabled. 

Although their circumstances are somewhat different, it is a story very familiar too me.  I know well the emotional shock of learning that your first child has serious physical and cognitive disabilities and will face a life of certain limitations. And then comes the search for escape from the tragedy narrative, a search facilitated by the daily experience of joy and contentment with a child who, in the eyes of others who are not as closely connected, appears to suffer.  Ultimately, it is not at all about suffering, or, at least, it is no more about suffering than any other life of any other human being.  It is simply a matter of life and being and experiencing a unique patter of happy and sad, good and bad, movement and stillness, inhalation and expiration, and onward through the inevitable polarities of existence.  Or, as Zhuangzi says, "It is! It just is!"

The author of this story, Chris Gabbard, falls back on his intellectual resources to work through the various issues he faces as a father of a disabled child.  And in that re-thinking he came to see, as the title of his piece - "A Life Beyond Reason" - suggests, the limits of reason; that is, "reason" as it is conventionally portrayed in Western philosophy.  He writes:

In my teaching and scholarship, I now interrogate some of the ideas that once informed my assumptions, and the questions that I ask fit awkwardly into the academic landscape. Is it really true that the unexamined life is not worth living? And is it accurate to say that only the possession of logos qualifies an entity for human status?

For me, Socrates' and Aristotle's monumental truths gave way to questions for which I still do not have answers. And yet I concluded that Martin Luther was wrong. I arrived at sufficient resolution to join a disability-rights group called Not Dead Yet and to pass out leaflets on its behalf when [Peter] Singer spoke on my campus.

I do not know how far I wish to go in demystifying logos. After all, I would not want to encourage my students to make unintelligent choices, leave their potential unexplored, or write irrational essays. What I do want to do, though, is bring forward to my students, colleagues, and readers what should have been obvious to me all along: namely, that the Peters and Augusts of the world are as much members of our human tribe as any of us are.

The encounter with Peter Singer, who infamously advocated for infanticide, is something many parents of disabled children come to sooner or later, especially those parents who toil in the vineyards of academe.  It is the epitome of the unreasaonableness of reason.

Gabbard is also uncomfortable with certain relgious answers to the question of the meaning of his son's life:

And I agree with Rabbi Harold Kushner when he writes and talks about bad things happening to good people: August's disability does not form a part of "God's plan" and does not serve as a tool for God to teach me or anyone else wisdom. What kind of a God would it be, anyway, to deprive my boy of speech and movement just to instruct me? A cruel and arbitrary God. August's disabilities are not a blessing; but neither are they a divine curse. To traffic in a cosmic economy of blessings and curses is to revert to an ancient prejudice. Indeed, even though August's disabilities offer ample opportunity for public interpretation, they do not mean anything at all in and of themselves—they have no intrinsic significance. They simply are what they are.

I, too, rejected the theodicy problem - it seemed a distraction to me, taking me away from seeing and understanding Aidan's life...

In any event, in that place where reason and religion together no longer seem relevant or helpful, that is where Daoism might enter the conversation.  It is skeptical about the capacities of human reason to capture the complexities and fullness of reality, and, in its philosophical expressions, does not rely upon the invocation of an anthropomorphic, god-like figure as a source of transcendent meaning.  No, as Zhuangzi say: "It is! It just is!"  There is no transcendent meaning; there is only the meaning we make from the particular circumstances we find ourselves in.  And we can make that meaning as we go along, we do not have to accept meanings created by others or imposed from without.  My solace, when I faced questions that Gabbard raises, came from this Zhuangzi passage:

...the real is originally there in things, and the sufficient is originally there in things.  There's nothing that is not real, and nothing that is not sufficient.
    Hence, the blade of grass and the pillar, the leper and the ravishing beauty, the noble, the sniveling, the disingenuous, the strange - it Tao they all move as one and the same.  In difference is the whole; in wholeness is the broken.  Once they are neither whole nor broken, all things move freely as one and the same again. (23)

Disability and Disease

I haven't blogged about disability in a long time but Michael Berube's post over at Crooked Timber has brought me back to it.

He presses back against those who have an overly simplified expectation of "cures" for disabilities.  A key point he makes is:

But there are two important points being elided totally ignored here.  The first is that we need to understand that disability cannot be collapsed into disease, and disease is not synonymous with disability.  Some diseases are disabling, yes; others are potentially disabling (diabetes, Graves, Hashimoto’s thyroiditis) but can be palliated with medication.  And most disabilities have no disease etiologies whatsoever.  Applying the cure/disease model to those disabilities is a category error, and fundamentally mucks up our thinking about how to accommodate disability in society as best we can.

I would push further and argue that we must also be open to acceptance.  Complete acceptance.  That is, to look at a disabled person and see that his or her life is not somehow broken or incomplete but, rather, full and integral unto itself.  This was the central theme of my book, Aidan's Way.  It was also what I was trying to get across in an NYT op-ed I wrote over eleven years ago.  The title I wanted for that op-ed was "Against Productivity," because my central assertion was that instrumentalist standards of "productivity" and utility by their very nature devalue and constrict the lives of disabled people.  The editors gave it another title, one that subverted the message: "Productive in his own way." 

These lines from Zhuangzi capture my feelings:

...the real is originally there in things, and the sufficient is originally there in things.  There's nothing that is not real, and nothing that is not sufficient.
    Hence, the blade of grass and the pillar, the leper and the ravishing beauty, the noble, the sniveling, the disingenuous, the strange - it Tao they all move as one and the same.  In difference is the whole; in wholeness is the broken.  Once they are neither whole nor broken, all things move freely as one and the same again. (23)

Each thing has its place in Way, and no one thing is superior to another.  Each is complete in and of itself...

Berube is fighting a more practical battle, for social and physical accommodation for people with disability.  And I agree.  Because it is precisely through accommodation that we would enable people to express the fullness of their being and, in doing so, we would see more clearly the value in disability.

The Diving Bell and the Butterfly

    We watched the movie, "The Diving Bell and the Butterfly," last night.  It is haunting, the tale of a man, Jean-Dominique Bauby, who, in his early forties, has a massive stroke that leaves him completely paralyzed, save for the movement of his left eye, but fully capable mentally, a condition known as "locked-in syndrome."  Much of the filming is from his point of view, envisioned through the perspective of his one functioning eye. This works fairly well to force us to understand just how profound a transformation his disability is for him.

    The title describes how he experiences his condition.  On the one hand, his body is weighted down and isolated from the moving world.  He thus feels like he is encased in an old heavy diving suit ("scaphandre" in French), drifting slowly downward underwater, unable to control himself, incapable of ascent or propulsion or physical interaction.  He adapts, however, through his imagination and memory - these are the butterfly of the title.  With his mind he can travel anywhere, do anything, move anytime.  His inner voice and eyes give rise to his narrative, the book that he writes (by an ingenious system of blinking his one eye to signal which letter an assistant should record).  The story allows him to transcend, or move through, his paralysis.  Whatever the flaws of the movie in dramatizing the book, it is a bracing presentation.

      And it makes me think of Chuang Tzu.  First, and most obviously, any time I encounter a butterfly metaphor, I think of the famous Chuang Tzu butterfly dream story:

Once Zhuang Zhou dreamed he was a butterfly, a f1uttering butterfly. What fun he had, doing as he pleased! He did not know he was Zhou. Suddenly he woke up and found himself to be Zhou. He did not know whether Zhou had dreamed he was a butterfly or a butterfly had dreamed he was Zhou. Between Zhou and the butterfly there must be some distinction. This is what is meant by the transformation of things.

      Now, I imagine that when Bauby awoke from his dreams he was confronted rather abruptly with his own reality.  Little chance of mistaking his life in a rehabilitation hospital for that of a butterfly.  But his flights of imagination, rather like Chuang Tzu's dream, did give him moments of liberation and inspiration.  They also may have opened a path to acceptance of his condition.  That' the other Chuang Tzu angle here: the virtue of yielding to circumstance.  Perhaps Bauby does not wholly yield (can any of us, really?) but he obviously adapted and wrote his book.  And it's that kind of adaptation, when we face conditions of demise and disability, that Chuang Tzu highlights  The character of Adept Cart, who comes down with a physically deforming illness, is asked if he resents his predicament, and Chuang Tzu has him respond:

"No, why should I resent it?" replied Adept Cart.  "If my left arm's transformed into a rooster, I'll just go looking for night's end.  If my right arm's transformed into a crossbow, I'll just go looking for owls to roast.  And if my butt's transformed into a pair of wheels and my spirit's transformed into a horse, I'll just ride away!  I'd never need a cart again!" (92)

    The irreverence in that passage might have suited Baudy.   It is something more than mere acceptance or adaptation.  It is a celebration of whatever we become.  And a reminder that there can be joy and freedom in what appears to be the most restrictive of disabilities....

Blindsight, The Movie

     We saw Blindsight on Friday night.  A great film, but one that raises a question about how we understand disability. 

      First, some background on the film, without too much in the way of spoilers.  The story focuses on a school for the blind in Tibet, set up by a remarkable woman from Germany who is herself blind.  She gets in touch with a man who was the first blind person to climb to the top of Mount Everest.  Together they organize an expedition for six of the Tibetan kids to climb a mountain right next to Everest, an extraordinarily challenging trek from anyone.  The movie follows the journey from its inception, showing us how difficult life in Tibet can be for blind people, how the kids gain a stronger sense of their potential in the world from facing the challenge, and how the ideals of American mountain climbers (whose goal it is "to summit") clash the values of Tibetan society (which is generally less concerned about getting to the top).  It's a great story with absolutely stunning cinematography.   Highly recommended.

     Now for the question about disability.  The movie conveys the sense that the kids are seen by society, and see themselves, in a different light because of the courage and persistence they demonstrated on the trip.  And that can be a good thing.  But it makes me wonder: is that the best way for us to understand disability?  I think not.  Generally, this is an consequentialist justification for human worth.  The kids are valued, or are valuable, because they did something or had a certain effect on the world.  Although it is good to realize that people with disabilities can have all sorts of positive effects on the world, it is dangerous to use this as a primary means for appreciating disability.

   The danger lies in the potential that some minimum expectation of effectiveness or productivity could emerge, a standard that would then come to define, implicitly or explicitly, some portion of the population of  disabled people as "ineffective" or "unproductive" or, worse, "useless."  It could then be a short step from that determination to a devaluing of certain disabled lives with all sorts of practical effects: the loss of health insurance, the termination of special education programs, the denial of social services.  We must always be on guard against the grimmer possibilities of utilitarian thinking.  I am against productivity as a standard of human worth.

     Don't get me wrong.  I think what the kids did was great.  And the people who helped them do it, and who made this movie, have rendered an admirable service.  But, at the same time, I also think that the kids would be just as valuable as human beings whether or not they had had this experience.  And the other kids at the school who did not have this kind of opportunity, and disabled people of all circumstances everywhere, are all also as valuable and "useful" as human beings as any other abled person.  Chuang Tzu may have said it best:

Hence, the blade of grass and the pillar, the leper and the ravishing beauty, the noble, the sniveling, the disingenuous, the strange - it Tao they all move as one and the same.  In difference is the whole; in wholeness is the broken.  Once they are neither whole nor broken, all things move freely as one and the same again. (23)

Arthur Miller's Irresponsibility

     It seems (hat tip John and Laura) and that the famous US playwright,  Arthur Miller, produced and passed on the sperm (I will not use the verb "fathered") that helped to create a son, Daniel, who had Down Syndrome.  This was back in 1966.  Miller did the wrong thing - he immediately rejected the boy, had him separated from his family and institutionalized, and basically denied his existence for most of his life.  This was not one wrong decision, but a life time of fundamental inhumanity.  Miller was no father to his son.

     In thinking about how to judge these actions, Confucianism comes immediately to my mind.  From that perspective the error is clear.  We forge our personal humanity by committing ourselves to and cultivating our closest loving relationships, especially those involving our family.  When we fail in those duties we diminish ourselves.  Miller, then, is unworthy of our respect, even if he created some of the greatest works of dramatic art in 20th century America.  His artistic accomplishments, however much they might contribute to the moral uplift of society at large, cannot be used to justify his failure in his primary duty to Daniel.  Indeed, his morally blind pursuit of personal artistic achievement ultimately destroyed his humanity.  He stands now as an exemplar of inhumanity.

       That, in any case, is the Confucian critique.  But let's push back a bit.  Might there have been acceptable mitigating circumstances that may soften this condemnation?

      What of the counterargument that he had to institutionalize Daniel in order to keep the family together, to better provide for his daughter and his wife?  Perhaps.  But this claim only goes so far.  It would have some force if Miller's socio-economic circumstances were such that the time and money needed to care for Daniel were unavailable.  Of course, this was most likely not the case for Miller in 1966.  He was famous and, I suppose, fairly well off.  He had medical insurance.  He could have used his fame to advance the cause of gaining access to public education for disabled people.  He could have hired therapists and social workers to provide for Daniel and offer respite for the family.  In short, he had the resources to care for Daniel at home without undermining the rest of the family.  It may have been an emotional strain, but that is not sufficient reason to completely deny and exclude Daniel. 

       Indeed, the case is worse for Miller when we keep in mind that his wife wanted to raise the child at home.  Thus, added to his rejection of his son, we have his obstruction of his wife's impulse toward humanity. 

      Also, Daniel's presence in the home would have had beneficial effects on his sister.  Although there are various studies that tell us how difficult it is to be a sibling of a disabled brother or sister, those effects, it seems to me, are often the result of parents not finding a workable balance between time spent with the disabled child and time spent with the typical child.  This is a manageable situation.  It may have been scary to contemplate in 1966 (it seems to me we know much better now the positive effects of disabled people in home and society), but fear, to my mind, is also insufficient as a justification for what Miller did to Daniel.

      What is most striking and depressing about all of this is the absolute quality of Miller's rejection of Daniel.  He had almost no contact with him for years and years; he never acknowledged publicly Daniel's existence.  The denial ran very, very deep.  It did not have to.  Let's say that Miller, for some emotional reason, was truly unable to face the fact of Daniel's presence in his life. Institutionalizing the boy might then have been justifiable, if, and I want to emphasize this "if," Miller had participated in his care.  If Daniel lived at some nearby "home" for disabled children and if Miller and his wife (and his daughter) went there regularly to be a part of Daniel's life, then, no doubt, Miller would have come to learn that his own fears and prejudices toward Down Syndrome were misplaced.  Daniel may have received better education and therapy, he may then have been able to communicate more effectively and Miller then would have discovered the intellect and wit and humanity that Daniel possesses.  In other words, if he had tried to do something significant with his son, if he had opened himself to learn from the circumstances, he would have grown in his own humanity.   But he chose not to.  He didn't even try.

      I will not speculate further on why Miller failed as he did.  But it will be hard to watch Willy Loman again and not wonder to whom attention must be paid...

Euthanasia in China

     A sad story in the LA Times yesterday about a severely disabled woman in China who is asserting a right to die:

Confined to a rusty wheelchair and unable to control her muscles below her neck, Li Yan seemed destined for nothing more than a short life of pain and hopelessness.

Instead, the 29-year-old with muscular dystrophy has been catapulted into the center of an ethical debate. Li, fearing that her disease eventually will leave her in a helpless state, used her blog in March to ask the National People's Congress to legalize her right to die.

"I don't want to live with my brothers and sisters-in-law after my parents' death, let alone go to an orphanage or welfare institute," wrote Li, a rosy-cheeked woman with plump lips who can't keep from breaking into a smile even when discussing her most morbid wishes.

     The article points out that public opinion in China seems to be overwhelmingly in favor of euthanasia in this sort of case, where an individual is making a well-informed and rational decision about her own life.  What is interesting to me is the lack of philosophical support for the pro-euthanasia position in the classical texts of Confucianism and Taoism.

     Confucianism would tolerate euthanasia, but the decision-making process would be of the utmost importance.  For a Confucian, individual preference would not be sufficient grounds for such an action.  That is, the afflicted individual would not be recognized as fully autonomous and independent to decide whether to live or die.  Such a decision would have to include those people closest to the person wanting to die.  Thus, if the parents of the individual opposed euthanasia, then an active move to assist in the death of that individual would not be allowed.  Siblings, spouses, children and perhaps other close acquaintances might also have a certain moral standing in the decision-making process.  We are, in a Confucian perspective, social beings and thus determinations about the beginning or end of our lives must be made in social settings.

     Taoism would be less tolerant of the idea of euthanasia.  The distinction of "letting die" and "causing death" is key here.  Taoism, with its "do nothing" sensibility, would have no trouble refusing medical care and thus letting an individual who had a terminal illness succumb and die.  But a more active intervention that would cause death before it was "naturally" present would be resisted by Taoists: too much "doing".    Indeed, the very end of the Times story has a Taoist ring to it: although the disabled woman suffers in certain ways, there is a broader meaning and significance to her life:

Despite the outpouring of support, Li still says she'll dedicate what time she has left with her faculties intact to gaining the right to end her life.

On a recent afternoon, she signed on to her online instant messaging service linking her to 300 friends. A month ago, she had 15. Her sign-on name is a line from a Chinese poem:

"The fragrance of a plum flower is conceived in the bitter cold."

Its message: To suffer is to grow.

"I feel really close to this idea," Li said.

 That reminds me of a line from Confucius:

The Master said: "Only after the seasons turn cold can we truly know the resolve of pine and cypress." (9.28).

      That might not be sufficient solace for Li Yan, but it suggests that she has her place, as valuable as any other place, in Way.

Human Diversity

     The NYT today has a story on the ethical questions surrounding prenatal testing for Down Syndrome.  It focuses on parents of disabled children and their efforts to tell the world, and especially soon-to-be parents, that life with Down Syndrome is not the tragedy it is often made out to be.

     This strikes close to home for me.  For years I have tried to tell the same story, centering on my son Aidan.  He did not have Down Syndrome; indeed, his disabilities were much more severe.  Yet my thinking is the same as the parents in this story: instead of holding fast to often unrealistic expectations about who are children are or will be, why not open ourselves to what they actually are.  Disability might mean that certain outcomes will be impossible.  But that does not mean that those lives are somehow meaningless or lacking in value.  Accepting the full range of human diversity, disabled as well as abled, makes us more humane.

     One paragraph in the story jumped out at me:

The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

     Calling the parents "evangelists" strikes me as unfair.  The larger issue, however, is well captured here.  It seems to me that, as a society, we are more concerned with "preventing" disability (which, of course, is impossible.  Even if some sorts of disabilities were eliminated completely through abortion, there are plenty of others that occur later in life...) than we are are celebrating human diversity.  The only reason new parents fear Down Syndrome is image of it they receive from the society around them.  Disability is defined as a problem.  Parents worry that their children will "fail" or be a "burden."  Society has only slowly adapted and accepted disability (it is still common to find physical barriers, like stairways, blocking access to people in wheelchairs).  If more were done to support people with disabilities, if the culture were less obsessed with youth and beauty and "success," there would be much less to fear in a diagnosis of Down Syndrome. 

    Taoism is a good starting point for a wider acceptance of disability.   Here are two lines from Chuang Tzu:

Sounding the ten thousand things differently, so each becomes itself according to itself alone - who could make such music? (18)

...the real is originally there in things, and the sufficient is originally there in things.  There's nothing that is not real, and nothing that is not sufficient.
    Hence, the blade of grass and the pillar, the leper and the ravishing beauty, the noble, the sniveling, the disingenuous, the strange - it Tao they all move as one and the same.  In difference is the whole; in wholeness is the broken.  Once they are neither whole nor broken, all things move freely as one and the same again. (23)

     So each becomes itself according to itself alone: that sounds right to me.

China Daily: How To Treat Disability

    Turns out my column in China Daily ran last Thursday.  They informed me today.  Here is a link.  It is about "Ashley's Treatment."  For regular readers of The Useless Tree, you will notice that I have blogged on this topic; so, the newspaper piece is an example of the interaction (I tend to avoid using the word "synergy") of old media and new.  Cool.

   It looks like this will be a regular gig.  Every two weeks or so, I will do a column for the main paper.  So far so good - not a word was changed from what I submitted.  It could be an interesting ride...