Death without Dominion

Chronic disease or illness sometimes leads us to what we term, for lack of a better word, the "choice" to continue life-saving treatment or to cease it, knowing of course the outcome is ultimately death. Control over our own lives and bodies is of normal human grounds, if we look at it through a secular perspective, as control can help mediate harsh environments and buffer shortcomings.

Terminal control, deciding whether or not to continue living, is decidedly a step too far for the U.S. judicial system notwithstanding that if you were dying, offing yourself would be the ultimate in environmental adaptation as resources are scarce no matter what (thanks to our hunter-gatherer beginnings) and end of life care is some of the most expensive care you will ever receive in your life.
Taking this control, however, while under our natural purview, has been cause for debate. Whatever controlling practices we hold over our bodies, body modification, discipline, medicinal and clinical treatments, choosing our own death is downright criminal from a lawful perspective, and pathological medically. Oregon and Washington, being the exceptional cases in U.S., lay their gaze of logic and tolerance upon a relatively few number of cases each year. Interestingly, most were well-educated Caucasians (Oregon's DWDA 2011, Washington DWDA 2011). In 2011, Oregon had 63 deaths and Washington had 70. The number of individual prescriptions written with the Death with Dignity Act far exceeds the number who ingest and die from the medication, a testament to the tenacity of the human spirit.

When I took Anthropology of Death with the brilliant Professor James Green here at the University of Washington, I learned how to articulate and frame the concept of the "good death". While different cultures value different experiences/practices in death, our U.S. culture strives for a peaceful death which can mean dying at home or in hospice care rather than a hospital unit, having all your loved ones near and ideally being pain free. We fear death, naturally so. Good deaths are thought to be peaceful, unhurried and expected. Assisted suicide allows for "good deaths" to be carried out, allowing for preparation and planning, but also can sound unsettling. As primates, our goals are to stay alive and procreate. It is all the particulars of the human experience that produce what Geertz termed "webs of significance". These webs define our "good death" and speak of our understanding of quality of life. From the biomedical perspective, assisted suicide can seem beneficial to the whole group. Spiritually, and here I specify religiosity, it is vehemently denied.
The Roman Catholic Church sees us as stewards of the bodies we live through, not owners with intimate desires. Islam as well fundamentally opposes assisted suicide by having Allah not only control our death, but most everything else as well. Many Christian factions strongly oppose physician assisted suicide in the traditional sense but accept withdrawing life support in certain cases. Religion provides the structural coping to deal with harsh environments, and these are a many varied thing.

While death clearly means different things to different people in differing of significance, to all it means a point of finality and transition, of abeyance and quiesce. The rarity of this opportunity, this "choice" to live or die, is evidence of the well honed biological process called life.



Title: And Death Shall Have No Dominion, By Dylan Thomas

Image: Antony Gormley "Clutch VIII" 2010

The Blind Men and the Elephant

by: John Godfrey Saxe


It was six men of Indostan
To learning much inclined,
Who went to see the Elephant
(Though all of them were blind),
That each by observation
Might satisfy his mind.

The First approached the Elephant,
And happening to fall
Against his broad and sturdy side,
At once began to bawl:
"God bless me! but the Elephant
Is very like a wall."

The Second, feeling of the tusk,
Cried, "Ho! what have we here
So very round and smooth and sharp?
To me 'tis mighty clear
This wonder of an Elephant
Is very like a spear!"

The Third approached the animal,
And happening to take
The squirming trunk within his hands,
Thus boldly up and spake:
"I see," quoth he, "the Elephant
Is very like a snake!"

The Fourth reached out an eager hand,
And felt about the knee.
"What most this wonderous beast is like
Is mighty plain," quoth he;
"Tis clear enough, the Elephant
Is very like a tree!"

The Fifth, who chanced to touch the ear
Said: "even the blindest man
Can tell what this resembles most:
Deny the fact who can,
This marvel of an Elephant
Is very like a fan!"

TheSixth no sooner had begun
About the beast to grope,
Than, seizing on the swinging tail
That fell within his scope,
"I see," quoth he, "the Elephant
Is very like a rope!"

And so these men of Indostan
Disputed loud and long,
Each in his own opinion
Exceeding stiff and strong,
Though each was partly in the right
and all were in the wrong!

So oft in theologic wars,
The disputants, I ween,
Rail on in utter ignorance
Of what the other mean,
And prate about an elephant
Not one of them has seen.

Science is Hard!

Robert Lemelson is visual and socio-cultural anthropologist and a residential researcher at UCLA's Semel Institute of Neuroscience. His work is heavily based in Indonesia and dramatically and unflinchingly explores issues of psychiatry, religion, conflict and trauma.

One of my favorite blogs, Neuroanthropology, recently did a post on his 2011 film, The Bird Dancer (Elemental Productions), which investigates the experience of Tourette's Syndrome as a collection of illness meanings through the context of a Balinese sufferer.
What I mean by illness meanings is that Tourette's Syndrom (TS) is not portrayed as it would be in a Nova special or on WebMD, biologically s and only at the very end socially contextualized, rather Lemelson anchors onto the social and cultural aspects of TS, giving not only a uniquely Balinese perspective of the experience but also with that penetrating gaze of the anthropologist.
The illness meanings anthropologists explore are what a scientist would call "soft data". The soft v hard science debate is a contentious one, and it rarely ends in favor of anthropology. Some of my previous posts touch on this tendency for anthropology, and other social sciences for that matter, to be inherently compared to sciences like physics, with the resultant attitudes are dubious of the qualitative methods and interpretive nature of (socio-cultural) anthropological inquiry. I am continually re-exposed to the view that only hard science is an acceptable form of data and that anthropologists are apparently trying to act as legitimate scientists (which I still can't find evidence of, and evidence after all is the anchor of hard science). Without even searching it out, through analysis of the "every-day", these attitudes persist. To be noted, anthropology is a broad field and has interdisciplinary tendencies. Forensic anthropology and physical anthropology are examples of a solid integration of hard science and social science and can be very technical indeed. Socio-cultural anthropology, on the other hand, can lean heavily towards the humanistic pole, eschewing numbers for more complex symbols or words and relies on qualitative, or soft, methods of research like descriptive writing. This "flavor" of anthropology tends to be under attack for something it is not, a hard science, and is not clearly distinguished for what it is, a way of studying people humanistically and with special import paid to person-centered accounts and experience and subjectivity. Doesn't sound very scientific? Well, it's not! It's wonderfully un-scientific and allows for a creativity of thought I relish.

What we do is indeed interpretive, something scientists abhor and the public generally doesn't take seriously. In the field of medicine, however, both hard and soft approaches to research need to be called upon. Lemelson's consideration of disorder and sickness, however dire the circumstances he shows us seem, isn't the medium our society takes seriously. The life of a Balinese TS sufferer indeed is removed from the evidenced based medicine we practice, and entrust our lives with, in the US. Thankfully, views are shifting and hard scientists are figuring out why the "humanistic" holds just as much weight as the "scientific" in solving problems. While TS isn't an epidemic or pandemic or really a public health concern at all, it does greatly effect the lives of the patients and their supporters and this in turn effects treatment. Treating and healing the sick and disordered is the agreed upon aim of medical science but the politics of knowledge value oft get in the way. It is human nature to be distrusting with new ideas, and with money, and numbers and graphs can be pretty convincing sometimes, while narratives on the subjectivity of second-generation Mexcan-American immigrants that have Type II Diabetes may be alarming, and surely interesting, but perhaps not worthy of hundreds of thousands in funding. These stories are meaningful, however, and invaluable to posterity.


http://www.elementalproductions.org/

Invisible Handicaps

Disability Studies is a nascent field of interdisciplinary approaches to understanding and making meaning of disability. Though the field itself does not declare any class of disability more or less deserving of academic scholarship, it has been noted that an over attention to physical disabilities has haunted the field. Intellectual and mental disabilities are gaining more interest, however, but this presents some difficulties. Ideally, the scholars in the field of studying disabilities would be disabled themselves. This is the general attitude towards ethnic studies as well, like American Indian studies, where those physically foreign to the subject matter, i.e. Caucasians, aren't given the same validity as would a Native scholar. In Disability Studies, the disabled are encouraged to become involved as their life experiences are unique to the human experience and lend a kind of authenticity to the work.
The movement towards inclusion of the non-physically disabled, or mentally disabled, presents natural barriers as the production of knowledge becomes hindered by the disability. Intellectual disabilities, developmental disabilities, like Autism, and Schizophrenia, hereafter "mental disabilities", present seemingly insurmountable barriers to higher education and the knowledge economy. Seen below, this logo does not make clear whether mental disabilities are included in their initiative.

I tread lightly here. Disability is still stigmatized in our society and while physical disabilities get a lot of visual attention and are an obvious target of affirmative action, the collection of disabilities that originate, and remain, in cognitive functioning are more difficult to integrate into the ADA movement due to their seemingly elusive and low-profile characteristics, i.e. it is easier to acknowledge someone's physical handicap than an abnormal frontal lobe. Any efforts towards integration and accommodation risk discrimination and exclusion for any disability but this is never truer when it comes to mental disabilities. Another major factor in this problem is the spectrum aspect of these afflictions. Research has shown that many mental and intellectual disabilities are "spectrum disorders"or spectrum conditions (I don't want to define here what is a disorder and what is a condition as these labels deserve an entirely independent analysis). So, the levels of disability in these fluctuate, which renders problematic the disabled label. This produces a sense of unease among those with mental disabilities in the Disabilities Studies field. Many simply don't reach that level of contribution to the community because their disabilities inherently disrupt or limit cognitive functioning, something that just doesn't fly in academia. While there are exceptions, a favorite of mine being Elyn Saks, who has Schizophrenia and happens to be a tenured professor at USC, they don't represent the critical mass of the mentally disabled who remain not just outside of the academic community but at times outside of their own local community as well.
I saw Dr. Saks speak at a conference last spring in Santa Monica. She had a relatively flat affect,or lack of facial expression, which is a symptom of Schizophrenia, among other mental illnesses. It was a physical sign of her disability but the tip of the iceberg of what Schizophrenia entails. Also of note, Temple Grandin, an Autistic scholar of animal sciences at Colorado State, has been very outspoken regarding her disability and credits her unique view on life to her deep understanding of animals.
In sum, I appreciate the difficulty our society has in dealing with and understanding those with mental disabilities. A malfunctioning or malformed brain is hard to group with physical handicaps such as deafness or loss of a limb. They take intensive treatment and therapy and can never be completely overcome, much like many physical disabilities. Contributions to Disability Studies can still occur from the mentally disabled, as a disabled mind can still have flickers of brilliance and insight and these perspectives are sorely missing from academic literature.