Uncategorized – Page 212 – Planet of the Blind

Disability, Honor and Citizenship, Reposted with links

I wrote recently that radical decisions have already been made regarding the value of disability life. Bill Peace writes at “Bad Cripple” about the nuanced alienation many in the disability rights movement feel as we honor the anniversary of Dr. Martin Luther King Jr’s “I Have a Dream” speech. I believe a good measure of this alienation in the disability community concerns honor itself–honor as a verb and as a noun. The distinction reflects political inaction in the first instance and a lack of nobility in the second.

Spinoza said (famously): “So experience itself, no less clearly than reason, teaches that men believe themselves free because they are conscious of their own actions, and ignorant of the causes by which they are determined.” Dr. King’s rhetoric in August, 1963 was driven by the irony that free will and human consciousness must sometimes be reacquainted and culture (remains) the cause of ignorance. Against this Americans have always believed logos and ethos are the underlying means and necessities of discourse. In America we are free because we say so. We are conscious of our freedom, aware of our actions, and mindful of what impels us to action. I won’t presume to speak for Spinoza but feel safe saying free will and action form a singularity, dependent on reason, necessitated by life as we find it.

This is not news for people with disabilities. Ask the folks at “Not Dead Yet” or ADAPT about essential action. But the nature of honor as a verb reminds us that life as we find it requires our fullest principles, not merely some of them–for honor like art holds a mirror up to nature, human nature, and lordy human nature is the most savage place of all. In the United States honor as action means more than “what is good for the majority of people”–more than the utilitarian semblance of ethos–for Jeffersonian democracy is built on the endlessly renewing and always radical assumption that all are created equal. Honor as verb must enact or assert this in America. One recalls Dr. King saying: “An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.” Honor in action is inclusive and means walking in the light of creative altruism as King called it. Certainly a decision by GOP leaders to skip the King commemoration displayed a failure to commit to honor in action, but I think the absence reflects something worse: honor taken as a noun means high respect or esteem. If free men are conscious of their own actions than choosing to forgo respect is both revealing and alarming. From this disabled man’s perspective the absence of action, a disinclination to embrace the national ethos that says we’re created equal means precisely what I think it means: “I’ve got mine, screw you.” I’ve got my gated communities; my private health care; my designer doctor; my personal jet; my children have legacy schools and fiscal opportunities–I’m sorry the list is so long.

Yes radical decisions have already been made in some circles regarding the value of disability life. As Marsha Saxton has written:

It is ironic that just when disabled citizens have achieved so much, the new reproductive and genetic technologies are promising to eliminate births of their kind — people with Down Syndrome, spina bifida, muscular dystrophy, sickle cell anemia and hundreds of other conditions. The American public has apparently accepted these screening technologies based on the “common sense” assumptions that prenatal screening and selective abortion can potentially reduce the incidence of disease and disability and thus improve the quality of life. A deeper look into the medical system’s views of disability and the broader social factors contributing to disability discrimination challenges these unexamined assumptions.

In effect the “nuanced alienation” from within the disability community referenced above is a direct result of the tacit acceptance within the American medical community that disability life is secondary life, or burdensome life. Saxton writes:

It is clear that some medical professionals and public health officials are promoting prenatal diagnosis and abortion with the intention of eliminating categories of disabled people, people with Down Syndrome and my own disability, spina bifida, for example. For this reason and others that I will consider here, many disability activists and feminists have come to regard selective abortion as “the new eugenics”. These people resist the use of prenatal diagnosis and selective abortion.

The resistance to selective abortion in the disability activist community is ultimately related to how we define ourselves. As feminists have transformed women’s sense of self, the disability community has reframed the experience of having a disability. In part, through developing a sense of community, we’ve come to realize that the stereotyped notions of the “tragedy” and “suffering” of “the disabled”,result from the isolation of disabled people in society. Disabled people with no connections to others with disabilities in their communities are, indeed, afflicted with the social role assignment of a tragic, burdensome existence. It is true, most disabled people I know have told me with certainty, that the disability, the pain, the need for compensatory devices and assistance can produce considerable inconvenience. But the inconvenience becomes minimal once the disabled person makes the transition to living an everyday life. The fact is, it is discriminatory attitudes and thoughtless behaviors, and the ostracization and lack of accomodation which follow, that make life difficult. The oppression, one way or another, is what’s most disabling about disability.

Many disabled people have a growing but still precarious sense of pride in an identity as “people with disabilities.” With decades of hard work, disability activists have fought institutionalization, discrimination in employment and education, transportation and housing. We have fought for rehabilitation and Independent Living programs, and proven that disabled people can participate in and contribute to society.

As a political movement, the disability rights community has conducted protests and effective civil disobedience to publicize our demand for full citizenship. Many of our tactics were inspired by the women’s movement and the black civil rights movement in the 1960’s. In the United States, we fought for and won one of the most far-reaching pieces of civil rights legislation ever, the Americans with Disabilities Act (1990). This piece of legislation is the envy of the international community of disability activists, most of whom live in countries where disabled people are viewed with pity and charity, and accorded low social and legal status. Disability activists have fought for mentor programs led by adults with disabilities. We see disabled children as “the youth” of the movement, the ones who offer hope that life will continue to improve for people with disabilities for generations to come.

In part because of our hopes for disabled children, the “Baby Doe” cases of the 1980’s caught the attention of the growing disability rights movement. These cases revealed that “selective non-treatment” of disabled infants, (leaving disabled infants to starve because parents or doctors choose not to intervene with even routine treatments such as antibiotics) was not a thing of the past. 6 In this same period, we also took note of the growing number of “Wrongful birth suits” — medical mal-practice suits brought against physicians purportedly on behalf of disabled children by parents who feel that their condition should have been prenatally identified. These suits claim that once born, disabled babies are too great a burden and the doctors who failed to eliminate the “damaged” fetuses or babies should be financially punished.

But many parents of disabled children have spoken up to validate the joys and satisfactions of raising a disabled child. A vast literature of books and articles by these parents confirm the view that discriminatory attitudes make raising a disabled child much more difficult than the actual logistics of their unique care.

Having developed a disability-centered perspective on these cases, disabled adults have joined with the views of many parents of disabled children in challenging the notion that raising a child with a disability is necessarily undesirable.

What’s missing of course in our general discourse is the presumption of competence, which brings us back to Dr. King’s speech for he was saying precisely this–we in America judge people by the content of their character and not by the color of their skin or the visibility of their crutches. To believe less than this lacks honor, honor in the second sense, as noun–to believe less than this is to be a man or woman without nobility.

Disability, Honor, and American Citizenship

Yes radical decisions have already been made in some circles regarding the value of disability life. As Marsha Saxton has written:

“It is ironic that just when disabled citizens have achieved so much, the new reproductive and genetic technologies are promising to eliminate births of their kind — people with Down Syndrome, spina bifida, muscular dystrophy, sickle cell anemia and hundreds of other conditions. The American public has apparently accepted these screening technologies based on the “common sense” assumptions that prenatal screening and selective abortion can potentially reduce the incidence of disease and disability and thus improve the quality of life. A deeper look into the medical system’s views of disability and the broader social factors contributing to disability discrimination challenges these unexamined assumptions.”

“It is clear that some medical professionals and public health officials are promoting prenatal diagnosis and abortion with the intention of eliminating categories of disabled people, people with Down Syndrome and my own disability, spina bifida, for example. For this reason and others that I will consider here, many disability activists and feminists have come to regard selective abortion as “the new eugenics”. These people resist the use of prenatal diagnosis and selective abortion.

Posted with Blogsy

The Cost of Ethical Presumption

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?

De Facto Eugenics

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.

Teen Wisdom

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.

Morning Prayer

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.

No Name for It

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

Koan Body

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.

Long LIfe, the Wild Pines Want it Too

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.