A Journal Of Rehabilitation

February 1, 2010 at 12:16 am

Commentary, art, and poetry by Eliette Markhbein, M.S., M.A. Founder, The Therapeutic Arts Program, Department of Rehabilitation Medicine, The Mount Sinai Medical Center, New York City

Drawing and writing came naturally to me while in rehabilitation after sustaining a traumatic brain injury and injuries to my spine, the result of being struck by a speeding car. They eased the physical, emotional and mental pain that were my constant companions and helped me find answers within.

Though complementary, the drawings and poems originated from different perspectives of the topics explored, emphasized other aspects and fulfilled separate quests. For example, "Braced-up" addresses in words issues of self concept and acceptance while the illustration was a life drawing, part of a series of sketches exploring femininity and searching for my own femininity after the accident. As a whole the series illustrate with candor and immediacy universal aspects of disability and rehabilitation, focusing on three periods: succumbing-hoping-coping, roughly a year each.

Succumbing

2005-2006 was the year of reckoning: reckoning with the extent of my cognitive impairments and contending with a person I did not know, could not count on and did not like-in other words the new me in all her splendor. Poems of that year (Writing; Alone; I so miss us) articulate the emotional distress and existential anguish I felt, the physical pain which became chronic, the depression that ensued and the unbearable loneliness, despair and isolation I experienced. I wrestled against drowning forces such as mental chaos, fatigue, lability and fear that was invisible to others.

WRITING
Write, write, always write
write when you have nothing to say
write when you don't feel like it

write anyway
write like you breathe
write nonsense
but always write.

Write to escape, to soar
to feel free, to feel whole
to feel peace, to feel love.
Write to shut up pain
the anguish, the fear
the edge of the precipice
the void, the despair.

Write to learn
another respiration
to let the night cradle you
to let your guts expode
your thoughts liquefy
to let FEAR exit.

WRITING - POEM WITH DRAWING
ALONE
Tears weigh
the air
you breathe.
You hear
yet do not look.
Despair dims
the light
you cross
you see
yet do not reach.
Crouched - a shadow
shakes
frightened
alone.
ALONE - POEM WITH DRAWING
I SO MISS US
Where have the playfulness
passionate discussion
sense of strength
and unity gone?
We walk on glass shards
afraid of each other’s
and our own explosions
locked away in pain
silently crying alone
grieving the light
and graceful dancers
we were not so long ago.
Where have the laughs
tumbling freedom
gentle touch, teasing
kisses as we cook gone?
My body is a casket
dark from fear
tight from despair
frigid from pain.
I SO MISS US - POEM WITH DRAWING Your time is
spent away from home
away from me.
Where have
the rejoicing in Fall
sun-filled mornings,
the lazy afternoon
readings
the comforting arms
gone?

You are lost
and so am I
in the maze of my
emotions
in the dread of your
weariness.
Burnt out, listless
we proceed
to where? to what?

Hoping

2006-2007 was the year of discoveries: poems of that year (Displaced; Braced-up; Rays) express a shattered sense of self, the discovery and the need to prevail over panic attacks and other dirty tricks my injured brain played on me, and the unearthing of new sources of peace, strength and clarity.

DISPLACED
Pink antique tiles
bear my weight
night air from
the window
brushes my face.
White linen drapes
sweep the floor
a tablecloth covers the table
empty but for a glass bowl,
reflecting moonshine.
Leaning on the wall
a tall mirror
sends my image
inwards, hurting.
And I stand
in the middle
of the kitchen,
recognizant of the place
the light, the sounds
yet not knowing
where I am
not knowing
my way
suspended, scared,
displaced.
DISPLACED
BRACED UP
I have become a Frankenstein,
patched up high and low
and in between.
From neck to feet
braces, braces, braces
holding me up
reshaping me.
Each set of
hard shells,
Velcro straps
and metal hooks,
cutting me
tearing me.
Yet, when I disrobe
and shed my carcasses
your eyes rest
on my curves
and you call me beautiful.
BRACED UP
RAYS
Rays of something better
to come
flash my conscience
like headlights in the night.
A heightened sense
of expectation
lightens my soul
frees my spirit.
Seeds of hope and wonder
a sense of joy and purpose
a trepidation
for a new beginning
flows vibrant in my veins.
A new strength
sourced in peace
and acceptance
rich in possibilities
reveals itself slowly.
What shape, what color
will my new life be?
RAYS

Coping

2007-2008 was the year of growth and fruition: poems of that year (Travel; Florida Summer; Attending) speak of acceptance and integration of my disability; group identification and advocacy; achieving a healthy balance between dependence, interdependence and independence; recapturing a sense of pleasure and playfulness; and reclaiming a social and professional place.

The last poem "Attending" talks about my caring for a locked-in syndrome patient as a Therapeutic Arts Practitioner, a metamorphosis from patient identity towards becoming a healer. As a final note I would like to emphasize that while the series of poems clearly indicate progress and resolution, the issues they describe do not disappear- with time, help and the application of compensatory techniques and strategies one becomes better at dealing with them.

TRAVEL
TRAVEL
Hello, your destination is
Gainesville?
Atlanta flight is delayed
heavy weather down there.
Connections will be missed
layovers will be long
fatigue and despair will settle in.

The wheelchair waits
at the counter,
parked by my side
let’s go before
I explode in tears.
Your hand clutches mine
as we zip through the airport
sobs build up and flood my face.
Panic sets in, stomach, heart
shoulders, down my legs
Thirty second cycles of hell.

You say people will think
I am sad to leave you-
I smile, I am.
Three loops of 30 seconds already.
I kiss your face lightly
your lips softly
you disappear behind security.

Hi, I wear a brace
need to be checked
by a female officer.
Yeah, yeah. Go through.
I ring loud and clear.
Take off your watch
sure, it’s not the watch,
it’s the brace.

Mam, do as you are told.
No watch- I ring loud and clear
Do you have any metal on you?
Huh…a brace?
Please remove it
Can’t- why not?

Ok… Step to the
side, voices criss in the
walkie talkie "female
officer to…"
Now the wait bare feet
exposed to incredulous
suspicious looks
I am not normal
I am disabled
I am not a security threat.
Wheelchairs with gray
haired ladies zoom by
I am not gray haired.
My attendant huffs and
puffs
impatience, disapproval
annoyance, boredom.

No curtains, no privacy
I am frisked- humiliated
I want to flee. I cry.
And the sun shines
and the breeze blows
and the trees sway
I will break away
my spirit will heal
I will feel whole again.

FLORIDA SUMMER
Nickel size water drops
percolate on the burning
tar, evaporting at once.
Steam rises fast
volutes of pearly
upward mist
soaking the wind
easing my skin
curlng my hair.
Lemony scent of magnolias
infuse the heat
tall grasses and leaves
green and earthy smells
lay thick to the ground
Oh no! my flip flops float away
go go little boats.
Abstract Drawing for Florida Poem
ATTENDING
Mute? Not so,
not by the farthest
stretch of imagination.
Your lips
shape silent words.
I hear them.
They stretch and lift a smile:
happy.
They round, soft and gentle:
kind.
They pout and tighten:
upset.
Your eyes
lovely and deep
shape silent thoughts.
I hear them.
They reflect deep in their pool
variant colors and tones
telling me
your surprise
your sadness
your resolve
your hopes.
ATTENDING Your hands
shape silent emotions
I hear them.
They hold each other
close and tender
listening to the book we
read.
They beat to the music
light and free
telling me your joy
in the rhythm.
I hear
loud and clear
the richness of your
soul
the sharpness of your
mind
the strength of your
will.
Your smile
your thumbs up
when I leave
fill me with gratitude
to share your life a
moment.

Additional information about Eliette Markhbein and examples of her work can be found on an ABC-TV interview, and in the online journal, Hektoen: "Trauma on Canvas".

The Bellevue Literary Press

December 15, 2009 at 10:20 am

Concerning the heavenly movements

Commentary by Erika Goldman, Editorial Director, Bellevue Literary Press

Our mission at Bellevue Literary Press is to publish books at the nexus of the arts and the sciencesawith a special focus on medicine. What counts for us is high-quality, authoritative writing, which might take the form of well-crafted history of medicine or science, or a novel where illness is a theme, though not necessarily a central one. Some of our authors are physicians, others, full-time writers.

The fun has been in exploring the variety of directions in which we can go while fulfilling our mission. While we focus on narrative nonfiction and literary fiction, we've also done photo essays, creative nonfiction, and a literary anthology. Our first books appeared in the spring of 2007, but we're lucky enough to have already received some major media coverage, including feature pieces in the New York Times and the Associated Press. Even as newspaper and magazine book review sections are shrinking or disappearing, our books are getting significant review attention.

We publish on average six non-fiction and two fiction titles a year. And we're the only trade book publisher (as opposed to academic or professional press) to be directly connected to a major medical centeraNew York University Langone Medical Center. We're proud to have published The Best of the Bellevue Literary Review, which we've been promoting to medical schools across the country. Danielle Ofri and her team have created an extensive companion study guide that makes it ideal for course adoption in medical humanities programs.

Our biggest nonfiction success to date has been The Lives They Left Behind: Suitcases from a State Hospital Attic, a history of American psychiatric institutionalization, which was written up in the New York Times, USA Today, Newsweek, Newsday and the Washington Post. After selling through several printings of the original hardcover, we reissued the book a year later as a paperback.

The work of fiction for which we've gotten the most attention to date is Tinkers by Paul Harding. Recently short-listed for the Center for Fiction's 2009 First Novel Prize, it explores the impact of illness on families and the bonds that link generations. Marilynne Robinson called it "truly remarkable," Publishers Weekly and Library Journal both gave it starred reviews, and it has an avid following among prominent independent booksellers who hand sell it to their customers.

At a time when mainstream publishers are cutting back their lists and staff, we're nicely positioned because we publish well-written, accessible books on subjects that people care about, including medicine and illness. Our material comes to us in a variety of waysavia literary agents or other industry contacts (including our own authors), our friends at the BLR, or "over the transom" (writers contacting us directly)aand our criteria for selection involve an assessment of the style and quality of the writing, how the finished book would serve our mission, and its marketability. We have a relatively small overhead so we don't have to sell tens of thousands of copies to make our business work. We want our books to be read and to carry their costs but as a nonprofit we're not subject to the same intense bottom line pressure that's made the blockbuster mentality dominant in the commercial publishing business.

So while this may be a particularly challenging economic environment for the book business, it's a fascinating moment to be a small press publisher. We're lucky enough to have attracted extraordinary authors, and our distributor, Consortium, has been wonderful, giving us the encouragement and support we need to flourish. If you think you may have a project for us, don't hesitate to be in touch.

How to Grow a Healthcare Humanities Program: 15 Steps For Success In Harsh Economic Times

November 17, 2009 at 12:02 pm

Portrait of Hippocrates sitting, reading.

Commentary by Allan Peterkin, MD., Associate Professor of Psychiatry and Family Medicine, University of Toronto; Head of The Program in Narrative and Healthcare Humanities; founding editor, ARS MEDICA: A Journal of Medicine, The Arts and Humanities

Most medical schools in North America have Bioethics divisions but not all have humanities programs. In the current climate of funding cutbacks and loss of investments for establishing new university Chairs, many academics assume that they will never have the resources to develop a new humanities program for their students in healthcare.A In this essay educators are encouraged to move forward all the same. By growing a grass-roots program and building a vibrant humanities community on their campus, they can have impact on the culture of learning at their institution and become a vital resource for their university. Administrators may then be persuaded to pay heed to the results and to offer administrative, institutional and financial support. Here are fifteen steps that were employed at the University of Toronto medical school and led to the granting of official status to the author's program and to pledges of funding from multiple sources.

1) Start with a hospital-based initiative and make sure colleagues and administrators know about your work. Hold monthly, inter-disciplinary lunchtime meetings with engaging speakers tackling "out of the box" subject matter. We've had sessions given by a family doctor studying to be a professional buffo clown, a toxicologist discussing poisons in opera, a nurse-dancer addressing the need for movement for children in hospital and how that might impact hospital design and a social worker offering `on the spot Atraining` for mindfulness in the hospital setting. Cast a broad net. Invite students and faculty from both health and arts disciplines. Advertise events in your university newspaper and hospital bulletin. Serve snacks (if you can!) Ask participants to fill out evaluations of the sessions . Keep these in orderAto demonstrate impact and for fine-tune your programming.

2) Choose a name for your program and be inclusive. We called our initiative "The Program in Narrative and Healthcare Humanities" in order to have appeal across disciplines. Some non-physician colleagues and other clinicians may object to (or feel excluded by) a "medical" humanities nomenclature.

3) Consider starting a newsletter, blog or print/online journal. We started "ARS Medica: A Journal of Medicine, The Arts and Humanities" 5 years ago with a small start-up fund from our very supportive Department Head and established a voluntary editorial board. The journal was/is a labor of love and has become the voice of our emerging discipline. Government arts grants have followed and the journal hit the radar of the university administration when we introduced a study guide with questions for reflection and study. The journal is now offered free of charge to all first year medical students in an innovative pilot research initiative.

4) Form partnerships with non-medical colleagues. Contact the heads of the English, History, Philosophy and Film Studies Departments and invite them and their colleagues/students to your monthly meetings. Find out who has a particular interest in health/disability/illness/narrative studies and ask them to present or to be a discussant.

5) Form partnerships with other healthcare humanities organizations nationally and internationally to obtain further guidance in establishing your local program. Join list-serves. (For example both the NYU Literature, Arts, and Medicine Database and the Literature and Medicine affinity group of the American Society of Bioethics and Humanities have been extremely helpful in assisting us to choose literary content for teaching students and for canvassing what's being done in the field.)

6) Form writing and research alliances with local, national and international colleagues. Publications and presentations are hard to ignore by funders and Deans.

7) Infuse your own department/faculty with humanities projects and seize opportunities to introduce arts-based content into existing curricula and lecture content. Ask to give a Grand Rounds on an art-based theme. Organize a student art exhibit in the lobby of your hospital or a yearly humanities essay contest. Introduce a poem or short text into morning rounds and link it to the subject matter or diagnosis at hand. Submit a workshop to a faculty development/ CME conference. (We offered three narrative-based medicine workshops to the Department of Family Medicine which were highly rated and subsequently increased the demand for training on reflection which incorporated writing and reading tasks). Make sure your offerings appear on your Departmental and Hospital websites.

8.) Form a list-serve and build a virtual humanities community for students and faculty. You'll discover that many of your colleagues (including those in non-clinical fields like research) are using arts-based teaching innovations but believe that they are working in complete isolation. They will be delighted to find like-minded educators and scholars at their own university and will also support future, more formal initiatives and funding requests. Build a website outlining the history of your program, listing affiliated faculty and summarizing presentations, initiatives and publications. Provide links to other healthcare humanities websites and organizations and ask to be listed on their websites as well. Post narratives and educational resources (like lists of films/texts useful in teaching). Become a "Go To" resource for colleagues in curriculum design and interprofessional learning.

9) As you build links with colleagues, prepare a list of possible electives which can be offered to students and residents. We have offered electives in guided reading on specific topics, creative writing and editing (working with Ars Medica editors) and have facilitated links with non-medical faculties. Make sure these electives meet the standards of your school and ensure that they are included on your website and in the syllabi of offerings for students and residents. Keep evaluations as evidence of your impact.

10) Hold evening events in the homes of your humanities faculty several times per year. A movie night for students and residents works well, as does the showing of episodes of specific TV series such as House or Nurse Jackie. Allow trainees to suggest content or to be a discussant.ASuch meetings build morale, foster community and help to advertise your other initiatives. Attendees may then volunteer to help you with specific tasks related to your program-building (publicity, research, writing letters of support etc.)

11) Organize an annual or bi-annual conference on a health humanities- based theme and hold it on campus. Last year we paired up with colleagues from the Department of English and offered a multi-disciplinary, international colloquium called Narrative Matters. One of our speakers was Dr Rita Charon, founder of the Narrative Medicine Program at Columbia University. Our Deputy Dean of the medical school was more than happy to introduce Dr Charon, but also took notice of the breadth of our initiative.

12) Offer to consult to your faculty on developing the potential links between the humanities and faculty wellbeing, professionalism, reflective capacity and interprofessionalism. Prepare/post resources of readings, films, writing exercises and websites which may be useful in teaching, personal learning or research. By offering our services, we were able to create 2 new courses on reflection and writing and to produce a humanities reader for first year medical students. We built the case that humanities-based initiatives needn't "steal" or compete with precious lecture time, but can be introduced organically at all levels of training from the pre-clinical years to Continuing Medical Education initiatives.

13) Hone your qualitative research skills and link with local, interested consultants. The impact of most humanities-based initiatives cannot be captured by standard bio-medical research protocols. Nonetheless your Dean will likely request proof for the relevance of your work, its impact on learning and for publications in peer-reviewed journals.

14) Act like an official program until you become one.AForm an official working group/program development committee. Keep minutes of your meetings. Prepare an annual report and then request to share it with/present it to your hospital Chief, Departmental Chair, Dean and other educational Deans at your faculty.

15) Choose your moment to request more official status (ie to be identified as a University program/resource rather than a local, hospital or specialty-based one) Be aware of trends in curriculum development within your Faculty (ie the introduction of a new portfolio for teaching, increasing demand for narrative-based interprofessionalAseminars.) as these may offer opportunities for enhancing the profile of your work. List affiliations/partnerships with other departments at your school to show that you have the support of key players on campus. Prepare a three year budget. Your start-up year should be at least 20% more than years two and three. Prepare a dream list for future development. (We hope to have a writer in residence and a fully endowed Chair at our university within 5 years). Explore all funding options including existing competitions for innovation in course design or inter-professional teaching. Your Dean may be more willing to match funds from your department, hospital or outside sources, rather than to fund your program in its entirety.

Readers of this blog are invited to share practical strategies of what has been successful (or less so) in their own settings. Let the dialogue begin!

Disability In The Mirror of Art

August 31, 2008 at 3:38 pm

Stream of Consciousness

Commentary by Tobin Siebers, V. L. Parrington Collegiate Professor, Professor of English Language and Literature, and Art & Design, University of Michigan

Mirroring Nature

Art is the mirror of nature, it has often been said, but what of disability reflected in the mirror of art? Supposedly, the fabled perfection of art began by mirroring the faultless beauty of nature. Greek and Roman art focuses almost always on the beautiful physique, and this focus, so difficult to shake, endures until the modern age. Johann Joachim Winckelmann claims in Thoughts on the Imitation of Greek Works in Painting and Sculpture that the beauty of Greek sculpture descends directly from the beautiful nature of the Greek body, beautiful nature and healthy bodies still being for him practically synonymous. Similarly, Alexander Baumgarten conceives beauty in his Reflections on Poetry as the mental harmony felt by the beholder before a body. The experience of aesthetic objects organizes in itself the internal consistency of the mind. Aesthetics begins implicitly, if not explicitly, as a mode designed to perfect human beings. Today, some thinkers continue to believe that images trap the psyche in the illusion of perfection, and although this perfection may prove to be a mirage, it has tenacious durability. Jacques Lacan speculates in "The Mirror Stage" (Ecrits 1966) that the human ego discovers at an early age the false image of its own perfection in the mirror. The small child, barely able to stand, nearly incapable of controlling its movements, looks into the mirror to discover the static but masterful image of a mature and able bodyaa narcissistic image of the ego that the child will never be able to live up to.

The Body in Pieces

Disability breaks the mirror of art as traditionally conceived by putting into question the art object's relation to perfection, but the beauty reflected in the broken mirror grows more beautiful as a result. The more we enter the modern age, the stronger the equation between art and disabilityaand to the point where we sometimes perceive the presence of art itself in the image of disability. Disability, disease, and injury have become the figures by which aesthetic beauty is often recognized. Hal Foster associates wounding and injury with an aesthetic realism born of the trauma of modern existence (Return of the Real 1996), while Linda Nochlin claims that the modern in art is made out of the loss of wholeness, embracing the impression that fragmentation reigns, connections in life have been shattered, and permanent values have disintegrated (The Body in Pieces, 2001, 23-24). She traces the essence of modernism to the French Revolution as the historical moment when the body in pieces becomes for modernity a "positive rather than negative trope" (8). Leonard Barkan's Unearthing the Past (1999) attributes the origin of modernity's appreciation of the fragmentary, broken, and injured to an earlier period, in the unearthing of classical fragmentary statuary in Renaissance times, calling the modern idea that fragments have "value independent of any potential for being made whole again" "a category shift" (122), one that reorients the "whole project of making art in response to broken bodies" (209). In an increasingly global world, modern art moves away from cultural languages to the biological diversity of the body, and disability marks the outer boundaries of the body diversely conceived. In fact, so strong is the equation between art and disability that we begin to view past works of art in terms of the irrepressible image of disability given by the modern world.

Nevertheless, the force of specific historical arguments, such as those by Foster, Nochlin, Barkan, and others, seems compromised by the fact that art has a longstanding relationship with the human desire to understand the human differently. The making of any object, out of any substance, by a human being is also in some way a making and remaking of the human. The object of human craft is the human being, and the most immediate sign of the human and the material out of which we craft it is the human body. If art and the human are inseparable, it is because art is the process by which human beings attempt to modify themselvesaand this process is a crucial factor in human history. Moreover, when art expresses the desire to perceive the human differently, it must consider human beauty differently as well, and if recent art shows anything, it is that beauty has become a radical concept by virtue of its preoccupation with the disabled body. Beauty is other todayaand like no other time in human history.

Mirroring Disability

The usual effect of reflecting on disability finds disabled people looking into the mirror and dreaming of ability. Putting disability in the mirror of art, however, discovers a different mode of reflection. A brief look at two paintings may help to describe the effect of combining disability and aesthetic value. Both paintings engage disability in relation to self-reflection, asking how art works put disability in the place of the beholder's mirror image. The first and earlier painting does not take disability as its explicit subject matter, although it is tricky, thanks to the centrality of disability to the ambition of art, not to read it that way. The second painting is the work of a disabled artist, and it takes her experience of disability as its theme. Nevertheless, the symbolism of the painting makes it difficult to reduce the content only to disability, suggesting that disability now claims a broader symbolic dimension touching on human imagination and self-transformation.

Two Bathers, or Dina, Back and Profile by Aristide Maillol has many typical features associated with his work (see Bernard Lorquin, Maillol Peintre, Paris: RMN, 2001, 166-67). The woman or women are fleshy, with round stomachs and heavy thighs; their breasts are small; and they wear their hair up in a twist. The nondisabled woman lies with her back to the beholder in the grass next to a pool. The armless and legless woman floating on the surface of the pool, whether the reflection of the nondisabled woman or her twin rendered limbless by immersion in water, faces the beholder. Thus, the painting unfolds a fundamental ambiguity that ends by confirming the importance of disability in modern art. The title asks the beholder to decide whether the painting represents one or two women, but the decision cannot be made absolutely without destroying the defining symbolism of the work. The conceit is to render the back and profile of Dina Vierny as an encounter between two bathers, providing the experience of volume given by sculpture, but the unity of the human body renders the conceit problematic in the absence of a mirror, explaining why the painting requires the presence of water as a possible reflective surface.

Reflection is the master trope of the painting, but this trope is anchored by the representation of disability, whether the work portrays one or two women. If the painting includes two women, it shows them reflecting on themselves in comparison to one another. Whether the encounter is erotic is not clear, but the image demands in any event to be read as a scene of desire. Either the women desire to possess one another or to be one another, producing the conundrum of modern identity recognized by feminist thinkers in which women are pitted against one another as they judge their bodies either superior or inferior. Here the fragmentary form of the woman in the pool signifies that crucial physical differenceathe difference that demands to be read as either the superiority or inferiority of one figure. If the painting includes only one woman, it pictures a woman examining her reflection in a poolathe archetypical scene of narcissism. But here the archetype fails because the reflection is not more perfect than the original. Narcissus does not fall in love with his better. Or, perhaps, the reflected figure is the more perfect: disability in the mirror of art revolutionizes the idea of perfection to include the impairment of foreshortened limbs.

The riddle of Maillol's painting is, at the very least, to move between these two interpretations, but one idea appears to be constant, whether the painting depicts two women or one: the work presents a confrontation between ability and disability. The figure in the foreground is able-bodied, but the figure in the background, because of the immersion in the water, appears as if her limbs are cut off, despite the fact that there is no reason why a reflection in water should automatically give the image of amputation. Rather, a more informed interpretation understands that the woman in the pool mirrors Maillol's embrace of the tradition of fragmentary classical sculpture and its definition of beauty. In this tradition, the loss of limbs demands to be understood as the essence of beauty. Maillol copies the beauty of the Venus de Milo here, as he does elsewhere (see his last sculpture, Harmonie, 1940-44, a bronze statue of an armless woman), capitalizing on the modern tradition of representing beauty by incompleteness, breakage, and disability. If there are two women in the painting, the disabled one is named the more beautiful, as if Maillol wishes to contrast an aesthetic, fragmentary, and broken beauty to a lesser, intact beauty. If there is one woman in the painting, she appears to imagine her form more perfectly as incomplete or disabled, as if she aspires to the legendary beauty of the Venus de Milo. In both cases, disability represents the aesthetic value and the summit of what beauty might achieve. The equation between art and disability found throughout modern art is confirmed by the fact that there is really no way to interpret the incomplete figure as other than beautiful.

Reflecting on Disability

Susan Dupor‘s Stream of Consciousness, shown above, shows a woman swimming downstream in a narrow river surrounded by lush vegetation, her reflection lightly visible and doubling her in the water around her. She is not, however, looking at the reflection. Her eyes are closed, and she seems to be sleeping, so relaxed and taken with the inner life of consciousness as in a dream. Only the appearance of nine hands rising out of the surface of the stream startles the tranquil scene. The hands mirror the hands of the swimmer, as if to mimic her future strokes as she advances downstream, but the painting is not an exercise in cubism, blurring, or trompe-l'oeil. Its goal is not to depict motion but thought, as the work's title indicates, for Dupor is deaf, and this painting, like many others by her, includes multiple hands as a method for expressing the presence of sign language. The stream in which the swimmer courses represents a stream of consciousness expressed in hand signs.

Although disembodied hands may seem to eyes untutored by Dupor to have a chilling effect, as if severed hands or the hands of strange beings were reaching out around the primary figure of the painting (see also Courtship or Halcyon), the effect here is not macabre because the hands are neither surrealistic nor gothic. They clearly belong to the swimmer, and they express a world in which she is deeply absorbed. Nor does the mirroring of the swimmer elicit a potentially damaging encounter in which two women judge one another's physical beauty as superior or inferior. The mirror image suggests self-reflection, but in the absence of narcissism, because sign language mediates the action of self-reflection. The swimmer is not self-absorbed but absorbed in languageaa language at once natural to her and artificial: the language of hand signs is both a part of the river and its natural surroundings and a social artifact used for communication with other people. More important, the work represents sign language with multiple disembodied hands, invoking the idea of fragmentary statuary, as in Maillol, but pushing the tradition of broken beauty in a new direction. Rather than representing beauty by removing body parts, Dupor's painting multiplies them, suggesting that disabled bodies possess a beauty and amplitude previously ignored. The swimmer flows through a world in which perfection does not provide the only standard for human ability and beauty. Spread out before her are the living symbols of a beautiful and expressive future defined by a radically different conception of the human body and mind.

Disability as an Aesthetic Value

Art's desire to transform the human revolutionizes beauty by claiming disability as the form of biological diversity with the greatest potential for artistic representation. The figure of disability checks out of the asylum, the sick house, and the hospital to take up residence in the art gallery, the museum, and the public square. Disability is now and will be in the future an aesthetic value in itself.

Summer Blog Hiatus

August 4, 2008 at 10:02 am

The Literature, Arts, and Medicine Blog is taking a break until September. We invite you to read some of the more than 20 blog commentaries posted during the past year.

Thanks for your support and attention!

Felice Aull, editor

 

Teaching Medical Listening Through Oral History

July 24, 2008 at 8:46 pm

The story of the Bhagvadgita.

Commentary by Sayantani DasGupta, M.D., M.P.H., Assistant Clinical Professor of Pediatrics and Core Faculty, Program in Narrative Medicine, Columbia University; and Faculty, Graduate Program in Health Advocacy at Sarah Lawrence College

The mystery of illness stories is their expression of the body: in the silences between words, the tissues speak. It’s about hearing the body in the person’s speech. — Arthur Frank(1)


Hearing the Body

A woman with a history of thyroid cancer is giving a life history interview to a student as part of a graduate seminar assignment. Her narrative shows how complex and interworven the pieces of an individual’s story are to one another. "My parents never felt strong enough to share with me that I was adopted," she reveals, "but deep down I had an inkling that was the case…I recall my mother, who had a separate walk-in closet from my father…saying to me many times over, 'You’re welcome to try on my clothes…but never touch the strong box that’s on the shelf because it contains important papers related to our house.'" At age 12, she finally opens the box, discovering the truth of not only her parentage - in the form of letters between her adoptive and biologic parents - but the key to her genetic health risks. When, years later, after having a child herself, she decides to contact her biologic mother, she discovers that her mother is terminally ill with ovarian cancer - 20 years after having had breast cancer as well - and that she herself is genetically predisposed to both diseases. (2)

Another student interviews her elderly father, a brittle diabetic who is slowly losing his ability for independent living. She compares him to Jean-Dominique Bauby, the completely paralyzed author of The Diving Bell and the Butterfly(3), describing her father’s condition as "The locked in syndrome of the aged." She both celebrates her connection to him and mourns his losses - present and future. "Sustained by memories, reflections and dreams and the adventures of the wanderings of the mind," she writes, "time will be fleeting and yet it will be all that he has…I know there is 'no currency strong enough to buy his freedom back from the kingdom of the sick.'"(4)

A young woman interviews her cousin, a man with a life threatening peanut allergy. She admits to her instructor that she picked her cousin for his sense of humor - "I didn’t want my illness interview to be depressing." Yet, although she has known about her cousin’s illness her entire life, the interview process inspires her to advocate for the safety of those with food allergies. Using Arthur Frank’s precept of living for others and 'placing oneself within the community of pain,'(5) she writes, "What Frank is advocating, I believe, is empathy - a quality that shouldn’t just translate into feeling but also action…I hope to carry on (my subject’s) message, combining both our voices into one, action oriented campaign.(6)

For the past seven years, I have taught a class on illness narratives at the graduate program in Health Advocacy at Sarah Lawrence College, a class in which students read autobiographical as well as scholarly writing about illness. The idea of teaching listening through the close reading of narratives is one that is consistent with my work at the Program in Narrative Medicine at Columbia University, where my colleagues and I teach medical students, residents, fellows, and practicing clinicians the skills of medical listening through the close reading of texts, as well as the writing and sharing of the students’ own texts.

However, the final assignment for my illness narratives class deviates from this tradition in medical humanities to use either literary or cinematic narratives in our teaching. Rather, I turn to the discipline of oral history to assign the students the task of conducting, transcribing and analyzing an oral history life story interview of a subject with a chronic illness. Before describing some more details about this exercise, it is useful to describe some ways oral history theory can illuminate our understanding of medical listening.

What is Oral History?

 

Oral history emerged in the wake of World War II, when historians in Italy and Germany became particularly interested in hearing the experiences of Nazism and Fascism from the voices of the people - realizing that the experience of the ordinary worker was not that which was recorded in the official history books. Oral history as a discipline focuses on "the interviewing of eye-witness participants in the events of the past for the purposes of historical reconstruction."(7). In addition to this broad-ranging understanding of individuals in their social and historical contexts, oral history is a field with a strong focus on individual voice and individual story - particularly the voices of the marginalized, oppressed or those otherwise "hidden from history."(8)

Oral interview as event

Oral history recognizes the interview as a unique event that can neither be reproduced at a different time or with a different interviewer. The uniqueness of the interview event is determined by the relationship of interviewer to interviewee, the nature of the questions asked, and perhaps, as esoteric factors as the time of day, directly prior occurrences, and cues of the physical environment.

Oral stories as meaning making processes

Oral history lends a qualitative understanding to oral stories - such that oral stories are not storehouses of confirmable 'facts,’ but rather, meaning making processes in and of themselves. Retrieving memory and constructing tellable stories are complex acts that reveal much about the teller’s sense of the world.

Oral stories as multivocal

Oral history recognizes oral stories as multivocal(9) and co-created by both teller and listener. Not only the questions asked, but the responses and reactions, body language, and very identity of the witness fundamentally shapes an oral narrative.

The oral interview as an "experiment in equality"(10)

Oral history is concerned with the possibility of interview bias secondary to issues of power and hierarchy - ensuring that the interviewer doesn’t impose their expectations upon the teller, guiding and determining the story. Simultaneously, oral history recognizes that no listener is 'objective,’ but that an awareness of her own filters and belief systems, as well as a degree of transparency, is necessary with the interview subject. I have made, in another location, an argument that such mutual transparency is fundamentally necessary to medical dialogue and practice.(11)

An Oral History Exercise

The oral history exercise I have designed for my health advocacy graduate students is a way for them to see 'narrative in motion’ - not only applying the theoretical ideas we discuss in class, but using some of the autobiographical texts we read to deepen their understanding of their oral history interviews. This multi-part, all semester assignment includes choosing a willing individual (whom they either personally knew or a willing stranger), constructing guideline questions, conducting a 45-60 minute taped interview of the individual, transcribing the tape verbatim, and then writing a paper which covers both the process of the interview and the themes which emerge from the interview. As a class, we construct an unofficial 'informed consent’ form, which details for the subject the solely educational purpose of the project, the ability to choose anonymity, and what will happen with tape, transcript and paper after the project is complete. Importantly, students present their oral histories to one another at the end of the semester, often, with their interviewees’ permission, playing samples of the audio (or video) tapes for the class. These sessions allow the individual life story interviews to become a collective series of oral histories - whereby one voice echoes another, certain themes resonate, yet, as opposed to statistical 'data’ - each subject’s particular, idiosyncratic voice remains intact.

This exercise has been adapted for Sarah Lawrence’s graduate program in genetic counseling, where genetic counselors in training interview pregnant women on, among other things, their ideas of hereditability.

The transformative power of an oral history exercise

This past year, I learned from a gifted student how much this exercise teaches listening and witnessing - even in the absence of a strictly ORAL narrative. Marleise Brosnan, a graduate student in the Sarah Lawrence Health Advocacy Program, conducted the first completely nonverbal oral history I have ever had in my class. When she approached me with this challenge, I wasn’t sure how to recommend she proceed, but encouraged her and her subject to find a way of completing the assignment. And so, my student interviewed her ex-husband Casey, who has had amyotrophic lateral sclerosis (ALS) for 5 years, been nonverbal for 6 months, with a tracheostomy and feeding tube, and only the use of his head and left hand. Marleise and Casey met on multiple occasions - far more than the required one visit interview - during which she would ask questions, then often spend hours interpreting - and confirming her interpretations of - his facial expressions, nods, vocalizations, and laborious handwriting- a process not unlike that which Jean-Dominique Bauby underwent in writing The Diving Bell and the Butterfly.(12)

The impact of watching one of Marleise and Casey’s interview sessions on videotape was profound for the rest of the class. Part of that impact was Casey’s physical presence - his handsome face, his disobedient body, the tracheostomy tube, the wheelchair. The majority of the impact, however, was witnessing Marleise and Casey’s profound connection over his story - her dedication to facilitating his 'voice’ and his to being 'heard.’

"I am waiting for freedom," wrote Casey on a lined 81/2 x 11 page that Marleise held horizontally before him, "from either a cure or death."

For my student Marleise, the experience of witnessing and co-authoring Casey’s story served several scholarly and personal functions. In her words,

"I recognize that I put my feelings about his disease in a box - and I put that box all the way in the back of my mental attic and stacked several other boxes on top of it. I know a day will come when this box will be opened and I will be faced with a mountain of sorrow related to his life and death…never once have I shed a tear. I cannot. For I know that if I shed one tear, all the tears in the box will come pouring out and just may consume me..I am conducting this interview in preparation for that day. So that when the day comes I will have not only participated in his care, but will have made a connection for him to the world after him and a gift to leave behind for his sons. I feel this exercise for some reason will also help me bear the weight of the immense grief and loss to come."

Conclusion

"Oral history interviews are unique in that the interaction of researcher and subject creates the possibility of going beyond the conventional stories… to reveal experience in less culturally edited form."(13) In the medical humanities classroom, oral histories provide aural texts with which students can engage in a different way than with written or cinematic texts. Oral history theory enriches our understanding of the dialogic encounter as a relationship building event, and the oral narrative as a co-created story reflecting both teller and listener. As a classroom methodology, oral history exercises allow learners to witness stories in profound and potentially transformative ways, even as they witness their own processes of witnessing. By placing the interviewer in the position of self-reflective learner, oral history suggests for clinicians a radically different stance from which to approach storytellers. Ultimately, these exercises can inspire not only a deeper understanding of the self and the other, but advocacy and action.

In the words of Marleise Brosnan, describing her own interview with Casey, "The interaction is central and what he is writing is secondary…He is having his say and I am the instrument that is giving voice to his thoughts. To my absolute surprise, I enjoyed the sound of my voice while listening to the tape afterward. I believe this is because although you can only hear my voice it is not really mine alone, it is ours. Our real time experience put both of us in the moment of his immediate thoughts and gave his voice meaning. It was a joyful experience."(14)

Endnotes


1. Frank, Arthur. The Wounded Storyteller: Body, lllness, and Ethics. Chicago: University of Chicago Press, 1995, p.xii.

2. Both the student and her interviewee kindly granted permission for their story to be shared here.

3. Bauby, Jean-Dominique. The Diving Bell and the Butterfly. New York: Vintage Books, 1997.

4. Both the student and her father kindly granted permission for their story to be shared here. Her comment here is complex and multilayered, she is both writing through Jean-Dominique Bauby’s story - adapting a quote from page 44 of his memoir - but Bauby and she are of course also referencing Susan Sontag’s notion from her Illness as Metaphor of illness and wellness as separate 'kingdoms.’

5. Frank, Ibid, p.37.

6. Both the student and her subject kindly granted permission for their story to be shared here.

7. Grele, R.J., "Directions for oral history in the United States," in D.K. Dunway and W.K. Baum (eds.) Oral History: An Interdisciplinary Anthology, Walnut Creek, Ca: Altamira Press, 1996, p.63.

8. Perks, R. and Thomson, A. (eds.), The Oral History Reader, NY, NY: Routledge, 1998, p.ix.

9. Portelli, A. "There’s always gonna be a line," in The Battle of Valle Giulia: Oral History and the Art of Dialogue, Madison, WI: University of Wisconsin Press, 1997, p.24

10. Portelli, A. Research as an experiment in equality. In The Death of Luigi Trastulli and Other Stories: Form and Meaning in Oral History. Albany: SUNY Press, 2001, 29-44.

11. DasGupta, Sayantani. Narrative humility. Lancet, 2008 March 22; 371 (9617):980-1.

12. After suffering locked-in syndrome secondary to a massive stroke, and being left with only the full use of his left eyelid, Bauby dictated his memoir to a scribe using a complicated system whereby she would say every letter of the French alphabet until he would blink. Bauby would memorize whole passages he wanted to write, then laboriously communicate them letter by letter.

13. Perks, R. and Thomson, A. (eds.), op cit.

14. Marleise and Casey graciously granted permission for their experience and words to be shared here, and indeed asked that their names be used.

A Medical Humanities Perspective On Racial Borderlands

June 30, 2008 at 10:31 am

Children of various skin colors and 14 DNA profiles in color

Commentary by Felice Aull, Ph.D., M.A.; Associate Professor of Physiology and Neuroscience, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

I have long been interested in the metaphor of borderlands as a tool for exploring areas of ambiguity in medicine and in society. Courses that I teach (to medical students) consider ambiguous boundaries between student and professional, patient and physician, personal life and professional life, disease and health, and the cultural confusion that derives from migration and dislocation. I address those issues using theory from the social sciences and humanities in addition to fiction, memoir, poetry, and art. One of the topics that we consider is the ambiguity inherent in concepts of race. This has become a topic of recent interest (and controversy) because race, medical research and practice, and health policy are being linked with the genomics revolution. And since all of these endeavors take place in a sociopolitical context, recent events and discussions in the national political scene cannot help but play a role in our thinking about these topics. With this as background, I offer some thoughts triggered by a recent confluence of events.

The events

1. The presumptive nomination of Barack Obama as the Democratic Party’s choice for president.
2. The March, 2008, announcement that the National Institutes of Health established the Intramural Center for Genomics and Health Disparities, whose priority is to "understand how we can use the tools of genomics to address some of the issues we see with health disparities."
3. Publication in the journal, Literature and Medicine, of "How Culture and Science Make Race ‘Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous," by Celeste Condit. (26/1, Spring 2007 pp.240-268).

What is race?

Because Barack Obama was chosen to be the presidential candidate of a major political party, much has been made of the advances this country has made in racial tolerance and acceptance. Yet the fact that so much attention is being given to the racial component of the upcoming election emphasizes that race and color are still important in the national narrative. Obama personifies the contradictions and fallacies of the way we traditionally think about race. Born in Hawaii to a "white" American woman and a "black" man from the African country of Kenya, Obama is identified by virtually everyone as "African American" and black, although he is culturally atypical in that he is not descended from US slaves. He himself for the most part accepts that designation but he has consistently sought to move beyond race and has even been described as "post-racial." In this country Obama is virtually forced to identify as African American because he is so identified by almost anyone who notices the color of his skin. Mr. Obama could not identify himself publicly as a white American or as "Caucasian," even though his ancestry is as much white as it is black. He could not "pass" as white, simply because we tend to equate skin color and other physical characteristics with something that many call "race."

While race has recently come to the forefront of national discussion in the political arena, it had already surfaced as a topic of interest among contemporary sociologists, anthropologists, evolutionary biologists, and others who questioned how biomedical researchers were characterizing populations and questioned conclusions that related biologic characteristics to "race." (See for example references 1, 2, 3 below). Already in 1999, the Institute of Medicine stated that race was a "construct of human variability based on perceived differences in biology, physical appearance, and behavior" but race was not a "biological reality." (The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved, p.38 as quoted in reference 1 below). Yet headlines are still being made by researchers who claim to identify genes that "explain" "racial" differences in response to drugs ("Genes Explain Race Disparity in Response to a Heart Drug," by Gina Kolata, New York Times, April 29, 2008).

Race-based medicine

There is much ongoing biomedical research that attempts to establish a genetic basis for biologic differences among populations, especially in the area of pharmacogenetics. Now the NIH is going to "continue efforts to develop genetic epidemiology models and population-genetics research projects that provide insights about the interrelationships of culture, lifestyle, genetics, genomics and health." The director of the new NIH center, Charles Rotimi, is described as leading "research on diseases affecting minority groups." While the word "race" is not used in describing the new institute’s mandate, it is of course a subtext. And while the goal of the research may be to address health disparities, and will take into consideration culture and lifestyle, subtle socioeconomic patterns of discrimination and lack of opportunity in education, employment, housing, etc. are apparently not included as factors that influence complex illnesses — yet they should be. For a recent relevant commentary on this, see Daniel Goldberg’s Medical Humanities blog, "On Income Inequality and Population Health" and also see the "stigma" issue of Social Science & Medicine, that Goldberg drew attention to a few days earlier.

In my teaching I used the recent penetrating article by Celeste Condit in Literature and Medicine (event #3 above) to consider concepts of race and race-based medicine. Condit lays out the background for the current interest in race-based medicine and then proceeds systematically to demonstrate that the complexity of human genetic variation can not be fit into discrete categories like race or what is more often now discussed as continent of origin and gene clusters. She marshals the evidence that "there are no discrete boundaries among groups; instead there are slowly changing [gene] flows" (p. 253). And here is why this essay appeared in a journal of literature and medicine: Condit asserts that language "is always predisposed toward discreteness and binarity" and that we cannot wrap our minds around "any single word or visual map that could capture the 3 million different patterns of difference [in the 3 million base pairs in the human genome that vary]" (250). In addition, Condit argues that the notion that "human genetic variation partitions people into ‘races' " is a two-step [probably unconscious] rhetorical strategy that claims (1) gene clustering coincides with continental boundaries and (2) continents coincide with five historically designated racial categories(254). She shows how verbal manipulation is involved in mapping genetic clusters with five continental groupings and then enumerates the many ways that racial designations fluctuate and do not consistently correspond with the five groupings or with genetic clusters.

I asked students to describe how they were being taught with regard to categorizing patients by race and ethnicity (variably, depending on individual instructors). We discussed the following: Isn’t it important to be able to design targeted drugs and treatments that are based on human genetic variation? Don’t we want to bring the genetic revolution to bear on health disparities among populations? Don’t physicians need to take race/ethnicity into account when they make diagnoses and recommend treatment?

Physicians may make erroneous assumptions about the ancestry of their patients, based on skin color. Even racial self-description is based on social and cultural factors that can have little to do with relevant genetic information- a problem that applies to research as well as to medical practice. For example, the recent paper (Reference 4) that made above-mentioned headlines in the New York Times used a sample repository based on self-identified "ethnicity" and classified its human subjects based on self-reported ethnicity (read "race"). So from a medical research and practice perspective, there are problems of interpretation. Many social scientists and biologists are concerned about these problematic practices because they fear that important socioeconomic factors influencing health will be obscured and the discredited view that race is a real biologic entity will reassert itself, with all of the baggage associated with such a view. Critics of race-based medicine do not dispute the need for targeted therapy and treatment but they urge individual genetic testing, and that researchers develop a "technical vocabulary . . . based on concepts of geographic distance from some arbitrarily chosen orientation" (Condit, p. 263).

Categorizing race/ethnicity for medical humanities

In medical humanities scholarship and teaching, culture, identity, and marginalization are topics of interest. Recognizing this, the editorial board of the online resource, the Literature, Arts, and Medicine Database (I am editor-in-chief) sought to identify authors or artists whose work reflected these topics from the perspective of a particular ethnicity/race. But this turned out to be a vexing proposition. Suppose we were to annotate one of Barack Obama’s books for the Database-should we categorize his ethnicity as part of our brief biographical information? If so, how? Such questions were debated by the Database editorial board at length a few years ago, and probably none of us are totally satisfied with our final decision. The decision was, for the time being, to categorize a limited group of authors who self-identify their ethnicity publicly and whose work reflects their interest in that ethnicity. And I admit that the categories we developed were Eurocentric — that is, whites are the (invisible) referent group against which all others are categorized and which assigns the categories. So, in the case of Obama, we would probably categorize him- as African American-because of ongoing racial discussions about him and his own discussion of race in his book, Dreams from My Father.

But now I give you an example of an author whose biographical information I struggled with several years ago, before we made the guidelines for ethnicity: literary critic, Anatole Broyard (1920-1990). At first I left his ethnicity blank, thinking that he was "Caucasian." Then, after reading Henry Louis Gates’s essay about Broyard in the New Yorker, I labeled him as African American -Gates wrote that Broyard came from a mixed-race Creole background; as an adult Broyard had not revealed that information to most people and was able to do so because he could "pass" as white. Yet I was uncomfortable, thinking that Broyard would probably not have wanted this information to be made public and, in addition, his ethnicity had nothing to do with the work I had annotated. After a while I removed the designation of African American and left his ethnicity blank again. Now we have the book by Broyard’s daughter, Bliss: One Drop: My Father’s Hidden Life — A Story of Race and Family Secrets (Little Brown, 2007), in which she traces back her father’s side of the family and finds in patterns of racial confusion and suppression an explanation for some of his behavior. She has "outed" her father for good (and herself??) and raised these issues for public discussion. Many of us like to see ourselves as "post-racial" and perhaps ethnicity should no longer be a marker for authors — but I don’t think we’re there yet. (I’m still leaving Anatole Broyard’s ethnicity blank.)

References
1. Sandra Soo-Jin Lee, Joanna Mountain, and Barbara Koenig. The Meaning of Race in the New Genomics: Implications for Health Disparities Research. Yale Journal of Health Policy, Law, and Ethics. Spring, 2001, pp. 33-75.
http://www.yale.edu/yjhple/volume_1/pdf/033%20(koenig).pdf

2. Alexandra Shield, et al. The Use of "Race" Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities. American Psychologist, Volume 60, Number 1, January 2005, pp. 77-103.
http://www.ncbi.nlm.nih.gov/pubmed/15641924

3. Troy Duster. Race and Reification in Science. Science, Volume 307, February 18, 2005, pp. 1050-1051.
http://raceandgenomics.ssrc.org/Duster/

4. Stephen B. Liggett, et al. A GR K5 polymorphism that inhibits beta-adrenergic receptor signaling is protective in heart failure. Nature Medicine, 14/5, May 2008, pp. 510-517

Teaching Film: A Perspective From Narrative Medicine

June 13, 2008 at 9:32 am

Film Reels

Commentary by Maura Spiegel, PhD; Associate Professor of English, Columbia University; Core Faculty, Program in Narrative Medicine, Columbia College of Physicians and Surgeons

Maybe it's because classrooms are now routinely video-equipped, or because, as an attention-challenged culture, most of us have come to expect power point or other visual "enhancements" in the lecture hall, or because movies can be so efficient in conveying an idea, or maybe it's simply because we love them so very much, that movies are being used more and more commonly in medical and nursing schools, in Clinical Practice courses as well as Medical Humanities courses. One approach used in Clinical Practice courses is to show short clips of exemplary clinical scenarios from feature films, followed by questions and discussion, and sometimes by role-playing. A favorite teaching text in this context is the 1991 film, The Doctor (dir. Randa Haines). A didactic film, The Doctor tells the story of Jack McKee, played by William Hurt, a highly skilled surgeon with a lousy bedside manner, superficial relationships with his colleagues, a troubled marriage and a frail connection to his young son. In the course of the film Dr. McKee is diagnosed with and successfully treated for laryngeal cancer, and as a result of this experience, he changes, develops a new sense of empathy, improves his relations not only with his patients and colleagues, but with his wife and son.

A Topical Approach To Teaching The Doctor

Matthew Alexander has developed a series of ingenious and doubtless effective exercises to teach The Doctor (see his article, "The Doctor: A Seminal Video for Cinemeducation"). He excerpts scenes from the film that exemplify the insensitive surgeon's behavior in a large teaching hospital. In one such scene where Dr. McKee makes attending rounds, he and his residents enter the room of a young male survivor of a suicide attempt. When they enter, McKee subtly gestures to the chaplain who is talking to the boy, to take his leave so that the doctors can do their work. The chaplain promptly gets up and makes an exit. After the doctor bombards his residents with questions to which they eagerly respond, McKee gets around to asking the patient (who had jumped from a fifth floor window) how he's doing. In response to the boy's expression of shame at his failed suicide, McKee advises him that "next time" if he wants to "inflict some real punishment on himself" he should "try golf."

After screening the clip, Alexander poses the following questions:
1. What is your experience of hospital hierarchy?
2. What are some ways that teaching rounds can be done to be sensitive to patients' needs for privacy and respect?
3. When is humor appropriate in the medical setting? When is it not appropriate?

Another short scene presents Dr. McKee and his attractive wife (Christine Lahti) in their car returning home late one evening for a quiet dinner. When he receives and answers a page, his wife expresses mild frustration.

Matthew Alexander's discussion questions:
1. What stereotypes does this clip reflect about the medical marriage?
2. What are some common challenges faced by physicians in balancing their work and home lives?
3. What strategies can physicians employ to protect personal time?

I expect that these exercises generate meaningful discussion and a productive exchange of practical approaches to real-life concerns. Without discounting the value of this use of the film, a Narrative Medicine approach to a film like The Doctor differs sharply in strategy and objectives.

A Narrative Medicine Approach To Teaching The Doctor

We undertake a discussion of the film as whole, as a story, using narrative skills to examine the characters, their trajectories, to follow their stories and engage them within their narrative context before drawing connections to the viewer's context. (A narrative skill we all bring to movie-watching is holding details of the story in mind that may not become meaningful until later in the story while responding to what's happening in the moment. Part of our task is exploiting that skill.)

A premise of Narrative Medicine is that attentiveness to how stories are told can make you better at considering a patient's story -or another caregiver's story or your own. It can help you identify what pieces of the story might be missing, what more you'd like to know, or what doesn't seem to fit. Noticing where a story begins and ends, who's included in the story, whether or not it runs along a familiar plot line, how the teller's affect changes in the course of the telling, etc., these are habits of mind for some people and acquired skills for others.

A discussion of The Doctor in a Narrative Medicine context might go in any number of directions. Unlike the exercises above, we would not rely upon isolated clips but rather would present the entire film with discussion to follow. The discussion might begin with the question:

What happens to Jack McKee in the course of the film?

[And here I offer a sort of simulation of the kinds of answers that might emerge in discussion]

McKee allows himself to feel and recognize his own genuine vulnerability, to admit to feeling afraid and to needing others. Early in the film, after his diagnosis, we see that he cannot tolerate his need to be cared for; indeed, such feelings enrage him; he demands that people stop giving him "those caring looks;" he shuns a colleague's offer of sympathy; he isolates himself from his wife after belatedly informing her of his diagnosis.

A facilitator might then pose the question:

Does the film suggest that this inability to tolerate his own needs and desires to be cared for might be tied in some way to his identity as doctor or more specifically as a surgeon?

And here someone might comment on the cliche idea of surgeons being macho, and this could lead to a discussion of cliche in the film more broadly. Someone might object that in fact being a surgeon requires a certain kind of confidence and that the specialty attracts a certain personality type. Another might suggest the film portrays Jack McKee as not just confident but smug -and heavily defended against feeling too much for his patients. Here someone might remind us of some of McKee's comments to his students, such as his observation that the unnatural act of cutting into someone's body requires the dampening of "natural feeling," or, even more to the point, his assertion to his students that caring can interfere with a surgeon's judgment. And here the further observation might arise that in medicine we sometimes encounter a hostility to introspection altogether -as feminizing or "touchy-feely," or a sign of vulnerability that is institutionally disallowed.

At what point are these strategies of McKee's presented as problematic?

For one thing, the filmmaker allows us to see the negative effect of his manner on patients, how they feel degraded, mocked, unseen. His behavior toward a nurse he works with is a complicated mix of flattery and insult - as he displays his bravado for her special appreciation. We might then discuss one or more of these scenes in detail.
Does the film present a key turning point for Dr. McKee?

Someone might observe that McKee's suspension of empathy as an effective medical strategy receives its first blow when he is preparing for his biopsy; we observe just how terrified he is -terrified, it seems, of becoming one of those objectified bodies he cuts into. Someone else might point to the wordless sequence that follows upon the announcement of the death the night before of one of the women McKee knows from the Radiation waiting room. After an exchange with his new friend June, a young woman dying of a brain tumor, the camera traces the looks exchanged among the small cohort of patients as they absorb the news that one of them has died. A young man with a tracheotomy struggles to cry; June looks at him, takes in his suffering; the camera moves to take in Dr. McKee, looking too, and looking at June -at her compassion for the young man, her sharing in his sadness. The scene, the free exchange of looks, feelings, recognition, separateness, mutuality, connectedness, lasts a minute or two, ending with McKee, having taken this all in, having really apprehended another's pain, the subjecthood of another, looking down -retreating into himself. We wonder what he is feeling, if he is allowing himself to feel his own pain.

To my mind the empathic reaction to someone's suffering is one of the most powerful film moments, indeed it's a rare image, despite the fact that suffering is so commonly represented in the movies. In this sequence we respond to the face of the suffering and weeping young man, but we respond also to the faces of those who feel for him, who are compassionate him. As viewers we can enter into the subject position or feel with both positions. Witnessing the power of a response to another's suffering or sadness has special poignancy in the medical context (of course). I believe I can make the claim -without unfolding an entire theory of psychological process- that caregivers are sometimes able to process experiences of their own through attending closely and reflectively to such scenes. Such representations of suffering are pliable and in some sense freeing; you can immerse yourself in them because you don't have someone reacting to you. (For more on this idea, see Heiserman, A. and Spiegel, M (2006) "Narrative Permeability: Crossing the Dissociative Barrier in and Out of Films", Literature and Medicine, Vol. 25, no. 2, pp.463-474.)

And finally, how does Dr. McKee's behavior with his patients change in the course of the film?

Before having his own experience as a patient, McKee would not have allowed himself to go near the state of neediness that he himself experienced anticipating his biopsy; instead he would have made a snide joke, as we saw with the suicidal young man. Late in the film, however, we observe Dr. McKee taking in and acknowledging the somber concern of a patient before transplant surgery; he allows the patient recognition and offers a sense of mutuality. We feel McKee apprehending the other -and we sense that in doing so he enhances his own inner world.

Although in some ways a reductive film, The Doctor offers an opportunity not only to discuss the importance and benefits to the patient and to the caregiver, of being present to others and to oneself in this work that is demanding in ways no other kind of work is. But even more significantly, I think, in discussing the film we in fact already advance these aims. That is, being present to others (and to oneself) can be cultivated in the medical setting, but perhaps not with practical exercises (or not with those alone), rather by cultivating groups with a facilitator to discuss films, read together, write together, and listen to one another. In speaking together about what is so strangely unspoken in hospitals,-suffering, sadness and death-caregivers can engage in authentic discussions that create a different space within the hospital. Such discussions can shuffle hierarchies or at least re-inform them, and they can promote the practice of using film or fiction or writing as a resource for self-care. (See Irvine, C. (2009) "The ethics of self-care." In Cole, T., Goodrich, T.J., and Gritz, E. (Eds.), Academic medicine: in sickness and in health. New York, NY: Humana Press.) This may sound like an entirely unrealistic aspiration, except that it is already happening in so many medical centers. An hour once or twice a month can work wonders.

Movies are of course also taught for their topicality. Films that address issues of gender, transgender, sexual orientation, nationality, race, etc. are introduced into curricula to raise awareness and build so-called "cultural competencies." And more and more film is becoming useful to ethicists for examining topics like organ transplants, genetic engineering, end of life issues, etc. where decisions made by characters can be treated as case studies or problem sets.

Narrative Medicine takes up some of these issues (look for forthcoming work in Narrative Genetics, for example) but we differ in our effort to exploit the fact that good movies communicate in how they are told. Calling viewers' attention not only to how a movie makes them feel but to how those feelings are aroused by the filmmaker is another habit of mind we strive to cultivate in caregivers, but I haven't space here to explore this approach.

We also aim to harness the enormous emotional power of movies. Few approaches to film in current film theory take the feelings that attend or that are provoked by film seriously, despite the fact that emotions elicited while watching film feel very real to us. These are emotions with depth, emotions we have felt before, and are inexorably attached to specifics within the narratives of our own lives. In Narrative Medicine we are developing pedagogical strategies for pursuing this relatively unexamined aspect of the movie-watching experience. One of our aspirations is to offer strategies for using movies as tools of introspection.

A literary commonplace (first observed by Aristotle) proposes that we are more prone to sympathize with fictional characters than with real people. Many theories have been floated for why that might be - if it is true -and here is one more: in the psychic world, one might say that making a character fictional is a way of making it real.

Doctors and other healthcare providers need a venue, an opportunity to engage narratives that bring into conscious existence what they encounter day in and day out.

An Initiative in Narrative Professionalism

May 23, 2008 at 10:45 am

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004
Commentary by Jack Truten, Ph.D., Visiting Assistant Professor, Department of Humanities at Penn State College of Medicine at Hershey; Chair of the College of Physicians of Philadelphia's Section on Medicine and the Arts; consultant in medical ethics and professionalism

Background

I've made education in medical professionalism my business in recent years. Frequently, I hear and read that there's a crisis in medical professionalism, that trust in doctors has eroded because medical technology and other interventions or intrusions have insinuated themselves into the sacred space between doctor and patient and, further, that doctors are seen to have been complicit in this infidelity. My purpose in this entry is not to investigate this claimanor to refute or defend itabut to describe one way to address it by offering a retrospective account of the first-year experience of setting up a medical humanities-based program in professionalism principally for house staff in a major academic medical centeraa program that was at its inception more start-up than pilot and is now more toddler than infant.

A few years ago, during my Fellowship experience in Clinical Ethics and Medical Humanities at a community academic hospital, I found that as I participated in clinical rounds and rotations, education modules and ethics consults, my presence was like that of an unwitting Trojan horsea singular, but unthreatening enough to attract unguarded disclosures from clinicians of all stripes about the tribulations and satisfactions of clinical practice. Most often, the tales I heard were of the crushing weight of workplace stress and the burnout and compassion fatigue it engenders. I also heard tales of less than ideal care-team cohesion and inter-professional tensions. It occurred to me that professional conduct is most likely to be found in those clinicians who have a strong and well-defined professional identity and that self-care is an important constituent component of such an identity. I had already received foundational training in Narrative Medicine at Columbia University and so decided to implement a twice-monthly on-site, in-unit program in "Narrative Pediatrics" for an inter-disciplinary group of NICU and PICU staff. Now supported by unit leadership and some modest funding, this program is still in place and working to diminish some of the suffering and struggles that are captured in the narratives produced and exchanged.

A little over a year a year ago, I gave a talk at the University of Pennsylvania, describing this Narrative Pediatrics program. Afterwards, I spoke with one of the Vice Deans in the School of Medicine there and we reached an agreement to develop together a "Narrative Professionalism" initiative for house-staff at Penn, convinced that a small group approach to professionalism education would be more effective than large, didactic lectures. Start-up challenges were predictable enoughabuy-in from faculty and departmental leaders, finding time in an already densely packed GME curriculum, and securing even modest funding. Working with only a few residency programs at the beginning of the year, our initiative incrementally expanded to the point where now, almost all clinical departments have taken part to varying extents, with some residency programs finding time to incorporate only two one-hour Narrative Professionalism sessions for residents per year into existing conference time, while other programs have signed up for three or four sessions per year, some featuring ninety-minute sessions. Growing interest in this program, meanwhile has led to the establishment of separate Narrative Professionalism sessions for fellows, for researchers and in seven individual ICU's for interdisciplinary groups. Currently under consideration is the establishment next year of similar sessions for new attending physicians and for inter-service or inter-departmental groups.

The program at University of Pennsylvania

The approach we have devised for house-staff education in professionalism begins first with a training session for the Program Director and other faculty interested in co-facilitating these Narrative Professionalism resident groups. In this one-hour introductory session, I explain the central concepts of Narrative Medicine and then enact for this faculty gathering a dress rehearsal of a typical residents' group where for the first ten minutes of the session, participants are asked to write informally about an episode from their clinical experience that somehow captures a professional predicament or success. For the remainder of the session, participants are asked to read these short narratives aloud, giving others an opportunity to listen and collectively to interpret the significance of what they heard. Resident sessions themselves are then co-facilitated by a trained faculty member and by me or one of my associates. Writing assignments are carefully and progressively sequenced such that in the first meeting, the question is Write about an occasion when you witnessed medical professionalism at its bestaor, alternatively, at less than its best …and in the second, Write about an occasion when your own professional identity took a hitaeither in your own eyes, or those of someone elseaor, alternatively, an occasion when it was strengthened or affirmed. Subsequent sessions can address specialty-specific professionalism concerns. Certain rules of engagement apply in these groups and are stated explicitly each time: that this is a safe and confidential context for full and open disclosure, with no outside revisitations or recriminations and that in these narrative exchanges, we're aiming not so much for solutions to particular problems but for shared insight into the constituent components of professionalism and its conduct.

Aspects of the devised approach that appear to work well are, first, the presence of a faculty facilitator who is willing to write and share his or her own narrative of professional challenge or resiliency, the presence of a neutral second facilitator with narratological expertise, and the applied principles of adult learning that invite participants to bring to the table their own understanding and experiences of the scope and nature of professionalism. Some themes and insights typically generated by residents' narratives include: the fragility of one's professional reputation, the pressure of high institutional expectations and standards, inter-professional/intra-professional/inter-service tensions, emotional engagement with/detachment from patients and families, and the realization that professional behavior, like ethical decision-making, is often situation-specific and context-dependent. Expressed satisfactions, meanwhile, typically refer to a sense of professional peer-group belonging, to inspiring mentors, and to the overall privilege of practice. Other dividends of the Narrative Professionalism approach are that the acts of writing and interpretation automatically enact reflective practice and that residents can develop a certain narrative competence that can, in turn, inform patient interactions as well as diagnostic and treatment decisions.

The response

Professionalism in the practice of medicine is notoriously difficult to measure and our participant evaluation data are at this point still being gathered. Resident evaluations of these Narrative Professionalism sessions from the beginning have been overwhelmingly positive, with characteristic requests for more time and greater frequency of sessions. The three core questions on the standard evaluation form ask participants to assess first, to what extent this narrative exchange experience was beneficial to their personal sense of professional well-being/resiliency, second, to what extent this narrative exchange experience was beneficial to their professional sense of team cohesion/affiliation and third, to what extent this narrative exchange experience will enhance their ability to deliver high quality care and treatment for patients and families. In preparation for a second, more established year of the Narrative Professionalism program at Penn, I plan to attend the forthcoming inaugural Advanced Narrative Medicine training workshop at Columbia University where refining instruments of program assessment and measurement will be a focused priority. With the ACGME's (Accreditation Council for Graduate Medical Education) designation of professionalism as one of the six general competencies that residency programs are required to teach, much remains to be attempted and accomplished in professionalism education: Narrative Professionalism is one efficient, cost-effective, and rigorous medical humanities approach that takes fully and properly into account the artistry of professional conduct in the medical workplace.

Children of a Lesser God at Oxford

May 1, 2008 at 11:21 am

Actors performing 'Don Guzman' to an audience of deaf-mutes using sign language. Wood engraving by G. Durand, 1877.

Commentary by David Henderson Slater, M.D., Consultant in Neurological Disability and Rehabilitation Medicine, The Oxford Centre for Enablement, Oxford, England; and Laura May and Dora Steel, Class of 2010, University of Oxford Division of Medical Sciences

A faculty perspective: Why should medical students study literature, film, and the visual arts?

Why should doctors know about the arts? Is it just to have a rewarding interest away from a busy professional life? Or is it simply part of being a rounded personality, to be able to engage in enlightened conversation at a dinner party? Although there is a long tradition of doctors who have a ‘second career’ as artists, (Chekhov and Keats are obvious examples), in Britain medical training has become very scientifically driven. Medicine here is usually an undergraduate degree, often with an intermediate year of science leading to an additional Bachelors degree before qualification after a further three years. Few medical students have previously studied an arts subject to degree level (I had, but that is relatively rare). So most newly qualified doctors have had a very scientifically oriented training.

In the last few years in the UK there has been an increasing awareness of the value of the arts as a part of the formation of a rounded doctor. In some ways this represents a return to traditional values. Most entrants to medical school were traditionally from privileged sections of society, privately educated; a ’rounded’ student with a broad education, along the lines of the Corinthian ideal, could have been assumed. That has been less true in the last twenty or thirty years. And it has been observed that this lack of a sense of values and interpretations beyond the purely scientific is to the detriment of Medicine and its practitioners. As a consequence there has been increasing interest in making the undergraduate medical curriculum broader than a purely scientific training in Medicine. Whereas the old medical syllabus was tightly controlled and restricted, we now have optional modules as part of the undergraduate degree; these are known in Oxford as Special Study Modules. These last from four to six weeks. Students here choose them in their fourth and sixth year of study.

I work as a specialist doctor in a centre for people with life-long disabling conditions - at the Oxford Centre for Enablement (OCE), which is part of the Nuffield Orthopaedic Centre, one of the Oxford teaching hospitals. We have close links with both the University of Oxford and Oxford Brookes University. Our patients in OCE have a wide variety of chronic neurological conditions such as multiple sclerosis, motor neuron disease, stroke and brain injury, or have experienced major physical trauma resulting in amputation; they are often very immobile, and have a variety of cognitive impairments, emotional problems, pain, spasticity etcetera. We cover a large area of central southern England as a specialist tertiary referral centre. I run a Special Study Module for medical students from Oxford University who are in their fourth year of training (the course most of them follow in Oxford is six years long). The module (‘Models and Meanings’) attempts to combine study of the disabling conditions and the person’s experience of them with a study of the representation of illness and disability in the arts.

When we see a patient in clinic, or in the operating theatre, or on the ward, we see only a tiny part of their lives. We tend to see what they want to present to us. The clinic and the ward are not real life, or only a tiny part of it. If I really want to know what life is like for my patient I have to spend hours at it - perhaps also visiting them at home (something I often do) or in the Nursing Home. That way I get a feel for the things that get forgotten in clinic- such as the long hours of inactivity, or the financial poverty of the family, and an appreciation of what is important to them - for example the religious artefacts on the walls, the family pets, the old cars littering their garden, the half finished Do-it-Yourself projects. I had a young patient who was wheelchair -bound, and his grandfather was trying to make a shower room for him.A But the room never got finished - it filled up with the plumbing tools, and the debris of the family’s life, and he was left to fend for himself in increasing chaos. Seeing him in his room, cold and isolated, in a wheelchair most of the day, with no easy access to a bathroom, alone in the house for hours, taught me more about his life than any number of clinic appointments.

But sometimes we can’t access the patient in this direct way, and sometimes we don’t notice things. Our minds and our eyes need to be trained to spot things; so does our imagination. As trainee doctors we get extensive training in physical examination. I believe we also need to train our imagination, to learn to think what life is like for others, to experience things vicariously. When I was a medical student, I had never experienced a major bereavement. I read a book by C. S. Lewis, A Grief Observed, and I felt something of his grief, far more than from anything else I had experienced up to that point in my life. Literature and films can expose us to things we cannot otherwise experience.

However, what we see and read may be misleading. All art is selective from reality, and represents reality with a particular slant. In Britain, many people above the age of 50 will have a clear idea of what they think life as an amputee is like which is based on a film about a Second World War fighter pilot, Douglas Bader, whose exploits impressed the nation, led to his being knighted, and set a standard of achievement which is hard for real life amputees to match. Similarly the achievements of Para-Olympians and wheelchair athletes have set a standard infinitely beyond the hopes of most people suffering from significant impairments. The images on the TV screen show us the amputee who gets around the course, and are very unlikely also to show us the blistered stump, or the half-way-round drop out.

In the Special Study module for Oxford University medical students, I am encouraging students to think about representation, about the way we see things as doctors, the things we tend to notice, to comment upon (the thin abdomen, the scarring on the back of the leg), and perhaps also the things we tend to ignore or not notice - the red eyes of the patient’s wife sitting in the waiting room, the bewildered children playing with the clinic’s toys. We are trying to notice the ways in which disability and illness tend to be represented in the media (the ‘Plucky Fighter’, for example). We are trying to compare experience and representation - one of the current students is looking at the experience of amputees and comparing it with the representation of amputation in films, seeing what the patients themselves think about the way they are represented. In the last few days we have looked at a film which will be familiar to many because of its portrayal of the lives of a community of deaf students and their various hearing teachers. Children of a Lesser God has continued to cause controversy amongst non-hearing viewers over the years. Below are the observations of two medical students.

A medical student perspective: Disability and Children of a Lesser God

As medical students, we do get some teaching on disability as part of our training, but it is limited and always seen within the context of medical care rather than as a topic in its own right. The only window we have into most of our patients' lives is the time they spend in hospital, and it's easy to forget that many disabilities can have an impact on everything an individual does, not just their use of healthcare. As part of our training we are allowed to spend some time exploring subjects that particularly interest us, so we have taken the opportunity in this module to combine thinking about portrayal of disabilities in the arts with actually meeting people undergoing therapy at the Oxford Centre for Enablement. We watched Children of a Lesser God as part of an introduction to issues surrounding deafness, but also more generally to the problems that can arise in interactions between disabled and able-bodied people.

The film is set in the 1970s, when educational segregation based on disability was more common than today. Most of the action takes place in an isolated boarding school for deaf children on a remote island, and although the school is presented as a supportive and stimulating environment in which to learn, the expectations of the Headmaster for his pupils are limited - he seems entirely satisfied that Sarah, his star pupil, remains working on the island as a cleaner. Perhaps as a result, she is frightened by life outside the school community, which she has not experienced since childhood. This highlights the central dilemma of education for people with disabilities such as deafness: segregation within a supportive and specialised community, or integration into the wider world?

In Children of a Lesser God, segregation between 'hearing' and 'non-hearing' people is not just limited to the educational years. As exemplified by the adult lives of Sarah and Mr Leeds, deafness seems to divide the world into two opposite halves: those who can hear, and those who can't. This is portrayed as a sharp and definite distinction: perpetuated from outside the deaf community, as society segregates deaf from hearing; and from within it, as deaf characters such as Sarah and the children refer to 'hearing boys' or 'hearing girls.' Perhaps because it is drawn as such a sharp distinction, the interface between these two worlds becomes fraught with misunderstanding and assumptions, and this is exemplified in the romantic relationship between Sarah and Mr Leeds. Only at the end of the film, and after much hurt on both sides, is a point of compromise found. To what extent an impairment forms part of both an individual and a collective identity is an interesting question. It is a question complicated by the fact that one impairment is not equivalent to another, and that Deaf people may have a stronger sense of collective identity than, for example, people who have had amputations.

In describing these two communities, the film doesn't explicitly use loaded terms such as 'normal' and 'abnormal', but we perceive that on some level assumptions about what is normal and what is not are reflected in the behaviour of the key characters. Mr Leeds, young and handsome, arrives on the scene as something of a 'knight in shining armour', determined to improve the prospects of his pupils by teaching them to speak, rather than to sign. Although he is a flawed character, it is easy to identify with his enthusiastic altruism to 'help', particularly as doctors. Perhaps this is something we should be wary of; and find out what sort of interaction a patient may want with the healthcare profession before we try to 'get them back to normal.' Sarah's fierce opposition to Mr Leeds's attempts to teach her how to speak in the film are perhaps an extreme example of this, but it highlights the dangers of assuming too much, even with the best motives.

Ill-considered terminology, however, is far from the greatest threat which has historically faced disabled people from their able-bodied peers. The exploitation of disabled people is a familiar theme in the arts, and one which Children of a Lesser God explores: Sarah has been sexually exploited by her sister's hearing friends. Some disability activists criticise depictions of disabled people as victims, but sadly the frequency of such depictions probably reflects a reality in which abuse and neglect are common. Interestingly, this film also explores "exploitation" in another sense: Sarah exploits her deafness as a protection from the outside world. She is often demanding and gets away with more than a hearing woman would be able to, partly through using her deafness as a defence and as an excuse for unreasonable behaviour. There is ample explanation and excuse for this in her abusive background, but the point that disability may not be only a vulnerability but also a tool in social interaction remains.

Although the film explores many aspects of life as a deaf person and interactions between deaf and hearing people, one thing it struggles - understandably - to represent is the actual experience of deafness. It is as full as any other film of sound, music as well as dialogue - which, incidentally, is nearly always spoken as well as signed. Only in the swimming pool scenes, first when Sarah swims alone and later when Mr Leeds joins her under water, does the viewer experience complete silence. This is a remarkably effective device, and one that perhaps the film makers might have exploited more fully.

This commentary discusses Children of a Lesser God as a film about deafness, but that is far from all it is. First and foremost, it is a love-story, and also a story about coming of age and learning to see the world in a new way. Deafness is a central, but not the only, theme, and to treat a complex human story as a tract on deafness would be a reductive and limited view. Even if it were, it would be misguided to generalise from this film about disability in general; firstly, because not all disabilities are the same, and secondly because for many, deafness is not a disability at all.

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ACharacteristics of the patient described have been changed to prevent identification.