The Story of S.: Teaching Poetry to Children with Disabilities

October 7, 2007 at 3:14 pm

Nicole Hefner and one of her students

Commentary by Nicole Hefner, Teaching Artist for Teachers & Writers Collaborative and Language Lecturer at New York University

For the past decade I've taught poetry to children with moderate to severe learning and mental disabilities in the New York Public Schools. Spring after spring, armed with little more than a bottle of water and a healthy stash of yellow #2's, I've entered the classroom. My work with these students has never stopped satisfying me on the truest and deepest levels. I visit; we write poems (almost always through dictation) and then the students trace, squiggle or have the help of hand-over-hand with a paraprofessional or teacher onto their own paper, making the poem more fully their own. At the end of the term, the poems are compiled and distributed in an anthology; cake is eaten and we wish our summer farewells, bidding all goodness until springaand poetry!acomes again.

This past May, however, my heart broke a little. I should say I've been at one particular school in Staten Island for all of my teaching artist years. My relationship with the staff is extremely rewarding, matched only by my relationship with the students. One particular young woman, I'll call her S., now 20 (students remain in New York's special education system until they're 21), has been in my class for five of the past six years, and so, I was especially happy to see her when I walked into her third floor classroom. Ms. Poetry, another student yelled, and although S. did look up at me she did so with little recognition. After a bit, she broke into a smile. Oh, she said with an overly dramatic hit to her forehead. Now I remember you.

But I could tell she didn't. Not at first, anyway, and then only in pieces. I was okay with that; maybe I looked different, I reasoned, and hmm, I thought to myself, I did seem to remember her having trouble with vision. But poetry! I said (surely too loudly). Of course, you remember poetry! There were other students in the room who I'd also taught for a number of years. I looked around at the silence. I said again. Langston Hughes? Dreams? For the love of cake, somebody's got to remember poetry. I smiled and looked at the teacher who shrugged sympathetically. S? I said (at this point I was flapping birdlike and pacing the linoleum). You know poetry. We do it every spring. You love it.

Again, the gesture: the palm to the forehead. Oh, now I remember, she said.

The light through the high windows held the dust in the air, and we moved on; we had to. There was only just enough time to get a poem written. At the end of our spring together, the poems were as beautiful and powerful as they have been in past years, and, yes, S. seemed to love poetry every bit as much as she always had, but I had changed.

When I first started teaching children with disabilities, I had a conversation in the school cafeteria with a teacher who was a thirty-year veteran. You have to change all of your expectations, she told me. Maybe, she said and pointed in the direction of a nonverbal 19 year-old, huge and burly and wild-eyed, who sat rocking and chewing on his hand as those with autism sometimes do to feel the stimulation. Maybe, today, he will hold a pencil in his hand. Maybe, he won't. You have to love them for what they can do; you have to get them to do what they can do.

I fear sometimes in the quest of being dynamic teaching artists we get so wrapped up in the art that we forget how real the students are. Our final products with their perfect-bound spines and their color covers may sit untouched on bookshelves for years as the very students who created them can't even read them. So intent are we on guiding the students to compose wildly imaginative poems and funky abstract paintings, we neglect their pain and frustration; we overlook their illness. Perhapsaand this may sound extremeawe go so far as to de-humanize them in the service of art.

But maybe that's the only way to do it. In buildings filled with nurses and wheelchairs, physical therapists and defibrillators, maybe it's best that I not know if S.'s cognitive abilities are slipping or if they will continue to slip. Maybe, all I can bring is the poetry and bring it how I've always brought it: in the moment, in the lovely, wild moment of connection that those spring afternoons grant us.

I'm reminded, finally, of a story Brad Lewis told the other night as we sat in on a round-table discussion about health and wellness with a group of NYU studentsaall of whom, brimming over with newly-discovered knowledge and wild hope for the future, are right around S.'s age. The story was of the Buddhist monk and the goblet. "You see this goblet?" The Buddhist said. "For me, it is already broken," and he lifted it to the sky and, then he drank from it. I imagine the water was sweet and cold but even if it was bitter I am certain that it was exactly what he needed.

The Craft of Writing: A Workshop for Doctors-in-training

September 9, 2007 at 5:55 pm

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004Commentary by Anna Reisman, M.D., Co-Director, Department of Internal Medicine Writers' Workshop, Yale University School of Medicine

In this blog, I'll tell you about a writing workshop for residents at Yale that centers on the craft of writing, and I'll argue that this focus has great value for doctors-in-training.

We created the Yale Internal Medicine Residency Writers' Workshop in 2003 to enhance residents' power of observation, provide a creative outlet, increase empathy, encourage reflection, and, through all of these, to combat burnout. The annual workshop runs for two full days each November and was led by Abraham Verghese in year 1 and Richard Selzer in years 2-4 (Selzer and I will co-run this year's workshop). The participants, mostly internal medicine residents with a smattering from psychiatry, pediatrics, and surgery, submit a piece of fiction or nonfiction prose. We spend a good portion of the time critiquing these manuscripts in detail. Unlike the writing that goes on in other residency programs and medical schools, where the idea is to set down one's thoughts and experiences in ordinary prose (i.e. journal entries, critical incident reports, parallel charts), our focus is on the writing itself: how to relate our experiences, and those of our patients (whether imagined or real), in clear, resonant, interesting, and lively prose. The Department sponsors a Grand Rounds on writing and medicine two months later, as well as a reading for faculty and residents and an annual publication called Capsules that is distributed widely. This year, we created sound files of some of the readings: (http://residency.med.yale.edu/writer.html )

In a study of the workshop, we found some of what we had expected: residents in focus groups reported a heightened awareness of patients' humanity and enhanced self-awareness. What we hadn't expected, and what we believe was one of the key ingredients to the workshop's success, was that the process of sharing writing created a unique camaraderie. The group bonded because everybody was similarly vulnerable.

Does a focus on the craft of writing make better doctors? Or does spontaneous, unpolished writing accomplish the same thing? I believe that there is a role for both in medical training. Informal writing - journal writing, for example - can be a very effective way to process our many often overwhelming experiences. Similarly, sessions devoted to writing critical incident reports can be a way to bring disturbing interactions (that might otherwise never see the light of day) to a discussion format with peers.

Taking the next step - finessing one of these unpolished pieces into a publishable piece of writing - is something else altogether. In the process of reworking the language, the rhythm, the images, the presentation of ideas, the writer must explore the experience more thoroughly in order to make the story logical and clear. For example, my own journal is a rich repository of experience but when I extract a section and prune and shape it into an essay or story, that is when I really start to understand its deeper meaning.

An emphasis on craft will, of course, appeal to a subset of residents who are interested in improving their creative writing skills. But shouldn't all physicians be able to write clearly? I believe that an opportunity to gain tools for expressing one's thoughts and beliefs in a variety of settings — whether writing a story, an opinion piece for a newspaper, or a research study — should not be missed. You can't go wrong with good writing skills.

 

 

The Patients as Teachers, Medical Students as Filmmakers VIdeo Project: The Video Slam

August 13, 2007 at 1:26 pm

Boy looking at camera is the teacher!Commentary by Dan Shapiro, Ph.D., Director, Medical Humanities Program, University of Arizona College of Medicine

Last year I asked 8 medical students to make films about patients. In pairs, they spent 8 months visiting and filming a patient and filming their real lives. They had to make at least three visits (most made 5-6), interview someone else in the patient’s life, go to a medical visit, and capture how the patient adhered, or failed to adhere, to the medical regimen. In fact, they went to home visits, birthday parties, festivals, sat in waiting rooms and met with a variety of health professionals. Then we edited their videos down to 7 minutes and showed them publicly and then in the curriculum.

Here’s the idea behind the project. Our medical school curricula have evolved, but were largely constructed between 1910 and 1950 when most patients presented with acute illnesses. Lengths of stay averaged more than three weeks in some hospitals and the medical trainee could watch, first hand, the entire illness experience from start to finish. Now, we spend 75% of our health care dollars on chronic illnesses and yet our trainees only see a smidgeon of the patient’s life.

In 1987 I was diagnosed with Hodgkin’s Disease and spent the next five years in and out of treatment. I had a few relapses, a bone marrow transplant, and more chemotherapy and radiation than one person should be allowed to enjoy. Along the way, I met a lot of physicians. While they were pleasant and competent, few had any idea of what it was like to live with the disease and its harsh treatments. And if they’d had a better idea of what it was really like to live with illness — they could have done a better job of preparing me for the predictable psychological and physical challenges I endured.

So, a few years ago I was editing a home vacation movie (new macintosh software gave all of us access to great editing software) when I noticed that there were things on the tape I hadn’t seen when I’d been taping the experience. I also observed that the act of editing is time consuming and requires careful thought — creating an organized narrative means understanding the important and less important parts of a person’s story. That’s where the idea came from.

We made four brief films including a woman with metastatic breast cancer, a young man with AIDS, a family coping with juvenile onset diabetes, and a woman living with a head injury, status post motor vehicle accident 25 years ago (in which her daughter was killed). While 8 data points are hardly convincing, to a person the medical students described this is as highly impacting experience and as of this writing I have 19 students signed up for this year’s project. They’ll likely work in groups of two or three.

Consider some of the issues portrayed on the films: Some are practical, such as, How do you get a six year old child to take a needle regularly? Which approaches to adhering to complex mediclal regimen work the best? And some are psychological, such as, How do you cope with the question of why me? How do you keep going when you’re convinced you’re about to die?

Here’s the bottom line:
Until our medical training systems realign to focus more energy on prevention and care of the patient with chronic illness, it behooves us to invite articulate patients to teach our students — our physician teachers have part of the story AND our patient experts have part of the story.

I’ll step off this little soap box now. Thanks for reading my diatribe.

Video excerpt at public TV station, KUAT website

Please send comments and questions to this blog, and feel free to e-mail Dan Shapiro at shapiro@u.arizona.edu