Author: stevekuusisto

An old post at the Center for Bio-Ethics and Human Dignity puts me in mind of how perilous the past decade has proven to be for people with disabilities when it comes to birth–simple birth–for eugenics has dominated the de facto assignation of medical services in ways that are both startling and alarming. Consider the following:

From Editorial: Human Dignity and Bio-medicine:

Arguably, one of the best extended contemporary discussions of human dignity and its implications for biomedicine was commissioned under President George W. Bush and convened by his President’s Council on Bioethics. The council’s two reports, Being Human (2003) and Human Dignity and Bioethics (2008), are the results of more than a few public meetings, thousands of pages of expert testimony, and the work of two physician-scholar-chairmen, Leon Kass, MD, and Edmund Pellegrino, MD. The work of the council provoked bioethicist Ruth Macklin to brand human dignity a ‘useless concept.’ Cognitive scientist Steven Pinker even assailed the notion of dignity as ‘stupidity.’ 

Nevertheless, both the term and the idea for which it stands continue to possess significant currency not only in the popular imagination but especially in medicine and law. In fact, Roberto Andorno, Senior Research Fellow and Lecturer at the Institute of Biomedical Ethics of the University of Zurich, maintains that the notion of human dignity is so ubiquitous in intergovernmental documents in biomedicine that ‘It is therefore not exaggerated to characterize it as the “overarching principle” of international biolaw’ (‘Human dignity and human rights as a common ground for a global bioethics’, Journal of Medicine and Philosophy 34 (2009): 223-240).

How does one account for this discrepancy? Can human dignity be at once both profound and indecipherable? Can it be both ubiquitous and useless? What happens if we expunge human dignity to the dustbin of incoherence, as Macklin and Pinker would have it? The implications of these questions for biomedicine, human rights, and public policy are difficult to overestimate.

Will our posthuman progeny one day see human dignity as a quaint historical artifact of our speciesist predilections? Perhaps. But removing human dignity from the table only seems to move the question of human rights to the foreground. Whence come human rights if not from human dignity? The United Nations’ Universal Declaration of Human Rights of 1948 affirms that ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world . . . .’ If human rights are merely a result of a social contract, humanity as we know it will survive only so long as the contract remains unaltered. In light of the history that gave new birth to this tradition—namely, the Nazi eugenics movement and the violations of human dignity that resulted from it—forfeiting the idea of inherent human dignity would seem potentially disastrous. 

When bioethicists like Ruth Macklin brand human dignity as useless they do not of course mean their dignity but rather the dignity of others. That much of contemporary bioethical reasoning descends directly from Victorian utilitarian philosophy is, perhaps, not as broadly understood as it should be–but the taxonomy of utility aside, the founding principle holds that what is good for the majority of the population should be the only yard stick by which ethical decisions are measured. This isn’t news for scholars of disability studies or for historians but it remains news–relevant news–in a time of extraordinary genetic advancements and managed health care. Most Americans do not realize that their right to give birth is not guaranteed in hospitals across the US and this is a co-determination of bio-ethics and the agents of medical insurance. If you’re told your prospective baby will have Down Syndrome you’re just as likely to be prescribed drugs for abortion, or, worse, denied pre-natal care should you insist on having that child. This is chilling news but do not worry: Peter Singer can explain it to you. 

As the Institute on Human Dignity and Bioethics puts it:

Human dignity, once a cornerstone for bioethics, is increasingly obscured by a contemporary culture of commodification. Myopic fixation on sexuality, fertility, and reproduction reduces the female body to a resource for medical exploitation and reproductive tourism. Procreation is being engulfed by the reproductive imperative and the child of choice. Without neglecting the ongoing emphases on beginning- and end-of-life issues, our task must include attention to prenatal discrimination, the neglect of the girl child, worldwide disparities in women’s healthcare and maternal mortality, and the objectification and exploitation of the female body. 

For commodification we may read utility–there’s money to be protected by eliminating children whose disabilities may conceivably tax the state or, yes, the insurance industry; money to be made promulgating designer babies; and yes, money to be made in medical exploitation. Against this contemporary horror show it is not reassuring to know that bio-ethicists are all too often the children of Bentham and Frances Galton. As my colleague Douglas Biklen at Syracuse University likes to say, when discussing our fellow citizens who can’t speak: “presume competence”–or does ethical presumption cost too much? 

I begin my blog post today with a lengthy quote from Andrew Solomon’s book Far From the Tree: 

“When I was in college in the mid-1980s, it was common practice to speak of the “differently abled” rather than the “disabled.” We joked about the “differently gruntled” and the “differently agreeable.” These days, if you talk about an autistic child, he differs from “typical” children, while a dwarf differs from “average” people. You are never to use the word normal, and you are certainly never to use the word abnormal. In the vast literature about disability rights, scholars stress the separation between impairment, the organic consequence of a condition, and disability, the result of social context. Being unable to move your legs, for example, is an impairment, but being unable to enter the public library is a disability.

An extreme version of the social model of disability is summarized by the British academic Michael Oliver: “Disability has nothing to do with the body, it is a consequence of social oppression.” This is untrue, even specious, but it contains a valid challenge to revise the prevalent opposite assumption that disability resides entirely in the mind or body of the disabled person. Ability is a tyranny of the majority. If most people could flap their arms and fly, the inability to do so would be a disability. If most people were geniuses, those of moderate intelligence would be disastrously disadvantaged. There is no ontological truth enshrined in what we think of as good health; it is merely a convention, one that has been strikingly inflated in the past century. In 1912, an American who lived until the age of fifty-five had had a good, long life; now, death at fifty-five is considered a tragedy. Because most people can walk, being unable to walk is a disability; so is being unable to hear; and so is being unable to decipher social cues. It’s a matter of votes, and the disabled question these majority decisions.

Medical advances allow parents to avoid producing certain kinds of disabled children; many disabilities may be ameliorated. It is not easy to determine when to exploit these options. Ruth Hubbard, an emerita professor of biology at Harvard, maintains that expectant parents who test for Huntington’s because they have a family history of the disease are in a quandary: “If they decide on abortion, they are as much as saying that a life lived in the knowledge that one will eventually die of Huntington’s disease is not worth living. What does that say about their own life and the lives of their family members who now know that they have the gene for Huntington’s disease?” The philosopher Philip Kitcher has referred to genetic screening as “laissez-faire eugenics.” Marsha Saxton, a lecturer at Berkeley who has spina bifida, writes, “Those of us with screenable conditions represent living adult fetuses that didn’t get aborted. Our resistance to the systematic abortion of ‘our young’ is a challenge to the ‘nonhumanness,’ the nonstatus of the fetus.” Snyder and Mitchell speak of how the elimination of disability marks “the completion of modernity as a cultural project.”

Some in the disability rights camp urge acceptance of whatever child you conceive, as though it were immoral not to conform to reproductive destiny. This is what the bioethicist William Ruddick calls the “‘hospitality’ view of women,” which finds anyone who terminates a pregnancy nonmaternal, ungenerous, and unwelcoming. In fact, prospective parents are dealing in the abstract with something that could become tangible, and that’s never an informed way to make a choice: the idea of a child or a disability is extremely different from the reality.

There is a problematic collision between feminism’s prioritizing of legal abortion and the disability rights movement’s opposition to any social system that devalues difference. “The fears are genuine, rational, and terrifying,” the disability activist Laura Hershey wrote. “We all face the prospect that what is supposed to be a private decision–the termination of a pregnancy–might become the first step in a campaign to eliminate people with disabilities.” She may be naïve about the motive, but correct about the result. Most Chinese people don’t hate girls, and no one in China is pursuing a campaign to eliminate women. But couples have been legally limited to one child since 1978, and because many prefer a boy, they give the girls up for adoption or abandon them. Although prospective parents may not be out to eliminate people with disabilities, medical advances giving them the ability to make radical decisions could undoubtedly reduce the disabled population considerably. “In this liberal and individualistic society, there may be no need for eugenic legislation,” Hubbard wrote. “Physicians and scientists need merely provide the techniques that make individual women, and parents, responsible for implementing the society’s prejudices by choice.”

**

What interests me about the passage above is Solomon’s naive belief that decisions about giving birth to children with disabilities are in reality–well–”decisions” for in fact hospitals, physicians, “hospitalists” and yes, even nurses routinely prescribe abortion for women whose genetic tests promise a likelihood of having a child with disabilities. Prescriptive abortion is the “norm” and is generally presented as the only option. There is indeed “no need for eugenic legislation” in our current health care system. 

I was talking two nights ago with a bio-ethicist who told me some hair raising stories of parents who, imagining they had a choice–that they in fact could have a child with Down Syndrome–were abruptly given the “heave ho” from a rather famous New York City hospital. The slogan on the hospital’s door ought to be: “No crippled babies delivered here.” 

What Solomon gets wrong is that radical decisions have already been made. 

**

Talking with the aforementioned bio-ethicist it was interesting to learn that anyone can appoint himself a bio-ethicist. Worse yet, the clear majority of academics advertising themselves under this banner are philosophers. Given that philosophy is not famously diverse within university culture, one wonders about the cultural competency of bio-ethicists. 

**

One wonders many things when thinking about disability and culture. I imagine that for Solomon analogies between gender selection in China and neo-natal disability discrimination in the US are apt, but in fact, the assignment of value along a bell curve of normativity is more sinister than such an analogy may afford. Value is economic. Bio-ethics is driven by utilitarian philosophy–that which provides the greatest value to the greatest number of people is to be promoted. There’s really not much of a step from Peter Singer’s opposition to baby’s with disabilities and Hitler’s characterization of the disabled as “useless eaters”. 

My own view is culture is far more accepting of difference than utilitarian assignments of value suggest but even so, there’s a lot of de-facto eugenics taking place right now in thousands of hospitals across the country. 

I wanted to start a new life, one of figures minus art,

Letting the butterflies go their way–with or without freedom.

A blue cup stood for nothing, no orphan or beggar,

No longing for rescue. I swear I’d had it.

Morning frost, sun on flowers

Held no method.  This was life

Like a dog’s–eye for shadow, 

Feet in cold grass; head up, 

Thoughts on stray clouds, thrilled 

Without meaning, the vagaries 

Of weeds and water, bearing me up.  

I knew. Said it early, by eighteen, 

Art for dog’s sake, vertiginous, 

No angels, no studios, none.

I was translating a poem 

about horses eating among trees, feeling

the tug of boyhood–I lived in the woods

as a child–loneliness sir 

fell over me, words topsy-turvy

like maple wings.

What’s the noun for summer-seeds

and loving god?

Don’t tell me about forest songs Mr. Academic.

I grew up with lyric stars and tenor birches.

Even pines sing though they pick their moments with care.  

The day ran away. Leaves turned over in late rain.

Poetry is not always personal. A magpie scavenged trash near my house.

I felt old by evening–the cuneiform scrawl of nature wears out my eyes.

Posted with Blogsy

On occasion night speaks and wandering horses stop to listen. I know this. My home is where I believe it is. I know this. Sometimes I say agreeable things to strangers. I think this is citizenship. I know this. I am walking on the Appian Way but only in mind. I know this. I miss my father, dead these fourteen years. He’s buried beside my brother. I know this. When winter comes I strap on my old hockey skates and though I can’t see I go fast. I have a long scarf it trails behind I know this. I have a love song chilly as dusk. I work in the fields sometimes. I stand up in this useless dying koan body. I know this. Walk in and out of shadow. Walk where I will. The horse has come to teach me. I know this.

Year after year and my old mother in her grave. I choose to believe her cares are lifted, the only thing I willfully imagine as I gave up on god and afterlives long ago. You shouldn’t care about my habits of mind so forgive me. The branches of the yew are fragrant. And small birds I can’t identify are high in its branches. My heart beats steadily. “Why” wrote Ikkyu, “is it all so beautiful, this false dream, this craziness, why?” Morning smells of pines. I could almost believe I’m in the mountains. The little dog raises his sweet face my way. Walls of memory come down. Again I’m a young student translating a poem: You came close. Hoar frost and snow was coming on. Clouds and branches at the windows. All night the stars were like a song. I went in, singing their song, step by step. In discrete moments this life, this branch with its birds makes sense.

Our balance is much like 

a leaf stirred 

in the middle of a forest–

explanation on both sides of the thing, halved

–Nilo Rauhala

(translated from the Finnish by SK)

By Andrea Scarpino

someone will remember us

I say

even in another time

Of Sappho’s writing: one complete poem and hundreds of fragments: torn pieces of papyrus—some found wrapped around Egyptian mummies—quotes included in ancient texts. 

The ephemeral nature of art, time’s fickleness, a culture’s changing attitudes. Sappho translator Willis Barnstone writes, “But the best indication, perhaps, of the general availability of her works in the classical age lies in the number of quotations from her poems by grammarians, even late into Roman times, which suggests that both commentator and reader had ready access to the corpus of the work being quoted.” And, “About 380 C.E., Saint Gregory of Nazianzos, bishop of Constantinople, ordered the burning of Sappho’s writings wherever found.” 

We can read Plato “virtually intact” and of Sappho, only pieces. A moment. A line. A breath. 

I read and reread Anne Carson’s translations of Sappho. And I love the fragments, their expansiveness, how much can be said, deduced, understood with only a moment on the lips. 

if not, winter

] no pain

I know what this means, exactly; I don’t need more narrative. How much a line of poetry can hold. How much of a story can be told without even one complete sentence. Or only one complete sentence: 

Eros shook my

mind like a mountain wind falling on oak trees

Doesn’t that say all that needs to be said? 

Which is not to dismiss the sadness I feel for all those lost poems, the sadness that sexism and religious fervor nearly obliterated such a lovely voice. A voice deemed threatening. 

At the end of his translation of Sappho’s work, Barnstone quotes from Stobaios’ fifth century Anthology: 

“One evening, while drinking wine, the nephew of Solon the Athenian sang one of Sappho’s songs, and Solon liked it so much that he ordered the boy to teach it to him. When one of the company asked why he was learning it, he answered, ‘I want to learn it and die.’”

Can you imagine? A work so beautiful, sublime—lost to ash as libraries were burned to the ground, destroyed. 

Again, Carson translates: 

You got there first: beautiful [

and the clothes[

And I think, yes. To write with such richness that even a fragment, a torn piece of text, can say all that needs to be said. This should be each of our goals, shouldn’t it? To make every word count. To make every moment shine.