A Film and Story-Telling Festival Focuses on Disability

Recently I had the opportunity to attend part of the New York ReelAbilities Film Festival. The 6th annual event in New York involved all five boroughs, but was based primarily at Manhattan’s Jewish Community Center. The program featured a dizzying spectrum of disability perspectives and concerns on film. It also included talks, photographs, parties and story-telling in presented by The Moth.

RealAbilities NY Disabilities Film Festival, 2014

RealAbilities NY Disabilities Film Festival, 2014

I liked everything about this festival. Perhaps the best aspect is that individuals with all kinds of issues can come, in real life, and meet other people with similar kinds of concerns. And so might their parents, or spouses and others who want to know, to gain a better sense of the experiences of people with varied physical forms. I don’t know that I could have imagined this kind of event happening, when I was a child or a young doctor.

For this post, I’ll stick to “the Moth” presentations, which numbered five. My instincts tell me not to declare favorites, so I’ll just provide a tidbit about each of the stories:

The first speaker walked onto the stage with just a bit of guidance. He was young, blind, handsome and funny. He spoke of growing up in a suburb. He was assigned chores and minded those. When in his early 20s, he signed up to participate in  a program that involved cleaning on Coney Island, the people in charge tried to keep him standing at the edge of the project, to not let him help out in a meaningful  way. He felt marginalized. By speaking with the other participants, gradually he entered the workspace. He got to get his hands dirty, doing grunt work with the rest of the crew. Happiness ensued.

Next, a dark-haired, smiling woman who has aphasia – difficulty speaking, casually stood as she told her story. Her name is Yvonne Honigburg, and she advocates for the National Aphasia Association. She described growing up with a sometimes secretive mother, of learning she was adopted, and of searching for her biological mother. Eventually the three met in a restaurant in New Haven, CT. Upon meeting Yvonne’s natural mother, the adoptive mother said something surprising. It ended well.

A woman in a wheelchair delivered the third, marvelous story. Millie Gonzalez has long curly reddish hair. She wore a sequined, shiny top and spoke of how she has always loved to dance. Evidently she has spina bifida, and after years of dancing with crutches, as a child and in high school, she’s learned to dance in a wheelchair. A while back she attended a previous ReelAbilities festival and saw the film Musical Chairs. After the event, upon trusting a man, perhaps the film director, he “twirled” her in the air, or something like that. Her heart stopped, momentarily, for the thrill of it all. It was very romantic. After that, she’s gone belly-dancing and advocating for people with disabilities.

The fourth speaker told of a moving story of her life with severe kidney disease and impaired vision. When she was a child, and the doctors finally explained to her what was wrong, she felt a sense of relief, knowing at least that there was an explanation for what she was experiencing. After some dark times, and dialysis, she received a kidney from her mother. Still, she lacked self-esteem, and hibernated. She spoke openly and vulnerably, about what led her to see the value of living. #uplifting

The final speaker walked on stage and, after a few minutes, mentioned that she had a prosthetic arm. She’d spent most of her childhood, adolescence and college years trying to hide her deformity. She didn’t want to be perceived as defective. In becoming a mother, she realized that her child had certain expectations….I cried, just a bit.

Seriously, you should listen to the Moth to find out what happened. And next year, or in your city, check out the ReelAbilities Film Festival.

No favorites. Each story is distinctly beautiful, and instructive (like people…)

All for a while,


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What to do about a Curved Spine? On Data, ‘BodyCast’ and New Directions

I don’t often write about scoliosis, a health problem that’s been with me since age 6. The problem is that my spine is twisted, S-shaped, and – without the support of steel rods, titanium cages between lower vertebrae, seven or so bolts and a screw into my hip – I couldn’t walk or stand up much, if at all.

Recently, the New England Journal of Medicine published an article on a rare, NIH-funded study evaluating treatment of this condition in adolescents. It’s an odd, semi-randomized trial: the researchers intended to randomize the patients to wear a back brace for at least 18 hours each day, or not. Not surprisingly, they had trouble enrolling young patients from over 1000 deemed  eligible; few were willing to be randomized to wear the brace, or not. In the end, they studied 242 patients. The endpoint was whether the kids who wore braces were less likely to need surgery.

How do you know if a child needs surgery for scoliosis? The authors state that “Curves larger than 50 degrees are associated with a high risk of continued worsening throughout adulthood and thus usually indicate the need for surgery,” based a 1983 report. The date of that limited old paper – and a greater point, I might add – is how little evidence there is for patients with scoliosis and their parents to guide treatment decisions.

An anatomical illustration from the 1921 German edition of Anatomie des Menschen

Anatomical illustration from the 1921 German edition of Anatomie des Menschen (wikimedia entry)

The NIH provides some information on scoliosis, although there’s not much on how common is the problem in moderate and severe forms. Significant scoliosis is far more common in girls than in boys. A lot of kids have a slight curvature, if you look hard for it, and many older adults develop curving of their spines. But the frank, debilitating kinds of deformity caused by an S-shaped spine at a young age, which limits the capacity of the heart and lungs, besides other problems, cosmetics aside, if of unknown frequency. And there’s little by way of hard data to distinguish among braces, surgical methods, duration of casting and other issues. I learned today that the USPSTF doesn’t recommend routine screening for this condition.

The NEJM study stopped early, because the results became clear. Wearing the brace significantly reduced the chances of an adolescent spine’s progression to severe curvature, from 72 percent down to 48 percent. So for the next friend of a friend or colleague’s acquaintance who calls me and asks what it was like to wear a Milwaukee brace as a child, and then to have surgery, I might refer them to this article, which supports the “bracing of adolescents” – quite a summary of 4+ years of my life, before the (brief) traction, surgery and casting.

Surgery for scoliosis is a much lesser and safer procedure than it used to be, but it’s nothing to choose if you can avoid it. When I was 14 years old, the orthopedist told us my chances of dying during the procedure were approximately 0.5 percent. I was good enough at math to comprehend it, and by then had been to enough doctors’ offices to know that he was probably making it seem better than it was. Besides, what were the non-fatal and long-term complications of the surgery?  I didn’t ask, but I’ve learned: Many –

Jump to yesterday evening, when by chance I got a front-row seat at Bodycast, an autobiographical performance art or “talk,” with bits of dance, music and neat images by Suzanne Bocanegra. The artist, now in her fifties, has scoliosis and wore a cast for two years as an adolescent in Texas. Frances McDormand, one of my favorite actresses, delivered the layered, piercing work. As Bocanegra mentioned, some people fetishize casting and bracing and putting women in traction and stuff like that, which is truly sick.

"Bodycast," by the artist Suzanne Bocanegra, at BAM

“Bodycast,” by the artist Suzanne Bocanegra, at BAM

I liked the show, and I’d be interested to see more of Bocanegra’s work. One of the threads was making order out of curves, art out of irregularities…She’s into tartans, and plaster casts, and art history, and classical notions of beauty. What she represented in Bodycast, as I saw it, was somehow putting different aspects of one’s life in order, and interweaving them, including the flaws.

Life is curved, usually, and maybe it’s better that way. Perhaps that was the Bocanegra’s point, or dot, as she might illustrate it.

And on that note, I’ll lead my readers to my new website: elaineschattner.com. What’s next?

I thank the artist for her work.


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Seeing ZocDoc, And Listening To A Panel On Improving Health Care

A few evenings ago, I visited ZocDoc. The youthful company, seemingly approaching middle age among startups that began in 2007, looks to be thriving. ZocDoc keeps its headquarter downtown in a loft-like, mainly open, SoHo space replete with a ping-pong table, open kitchen and mock street signs pointing (abstractly) to concepts like “Make Work Fun” and “Patients First.” The vibe amongst the crowd – a hundred or so by my crude estimate: a mix of doctors and entrepreneurs, a few journalists, insurance executives and investors, along with some ZocDoc employees – was strictly positive.

According to its website*, ZocDoc is:

… a free service that allows patients to find a nearby doctor or dentist who accepts their insurance, see their real-time availability, and instantly book an appointment via ZocDoc.com or ZocDoc’s free apps for iPhone or Android.

Basically it’s a small-but-not-tiny, growing health IT company that provides an on-line way, like an app, for people to find doctors who accept their insurance and have available time slots. (Think of OpenTable, but for health care?) Since 2007, ZocDoc has expanded. The company, with some 450 employees, claims over 2.5 million users monthly in over 1,800 cities.* Its business model includes that doctors, dentists and possibly other provider-types, pay an annual fee to participate ($300 per month, an employee told me). Since it started, ZocDoc has received significant press and gained prominent investors like Goldman Sachs and Jeff Bezos. It’s won awards as a top-notch place to work. Kudos!

The main event was a panel discussion of a dry-sounding subject:  “Improving Healthcare: The Public and Private Sectors’ Shared Responsibility.” ZocDoc’s founder Chief Operating Officer, Dr. Oliver Kharraz, introduced a formidable panel of speakers, in this order: Senator Tom Daschle, Dr. Brad Weinberg, of Blueprint Health, Senator and Dr. Bill Frist, Rich Fernandez, of the Boston-based Steward Medical Group and Dr. Amanda Parsons, of the NYC Dept. of Health and Mental Hygiene.

Dr. Kharraz opened with a question on how technology and medical startups, like ZocDoc, will fare in the context of Obamacare and upcoming, uncertain changes in the health care landscape. Daschle was first to answer, and he did so by congratulating the company for its talent and the passion it brings to a turbulent, transformative health care environment. A fit-looking Frist, a former heart surgeon, spoke enthusiastically on opportunities in the private sector. Other panelists chimed in, with words like “value,” “exciting,” “risk,” “entrepreneurial,” “wellness” and “opportunity.”

No word cloud is needed; we were in one. And it’s hard not to be charmed by the brightness of enthusiastic and eager tech-folks who want to make it easier for people to get to doctors they might need. In theory. The ZocDoc space bore no semblance to any hospital or office where I’ve been a doctor or a patient.

At the end of the discussion, one of the panelists noted the group’s apparent agreement on the terrific-ness of the enterprise. Rather than opening the session up to questions from the audience, we were invited to mingle and ask questions of the speakers. If I’d had the chance, I’d have asked a few:

1. Does ZocDoc help people get well, or is it simply a web-based system for procuring appointments with doctors who sign on?

2. What does ZocDoc offer that another health IT program, or portal, can’t or couldn’t provide?

3. How does ZocDoc help patients who don’t have insurance? (OK, it doesn’t; but that’s not the company’s aim)

4. Sure, ZocDoc has value. It helps a small fraction of the population who might be traveling and for one reason or another need to make a doctor’s appointment without having time to ask around or call in, or prefer to just click for an appointment (as I do for groceries), but…Does ZocDoc improve the quality of health care received?

5. How do you reconcile the money being invested in start-ups like these, which make health care “easier” for a few, with the lack of resources faced by real, nearby NYC hospitals closing?

Keep in mind, my concerns are based in my enthusiasm for technology in health care, and for giving providers, aka doctors, a “shot in the arm” of modern-ness. Enter the 21st Century…But there’s no hands-on a patient, no real medicine here. It’s too clean. I’m not convinced the value’s true.

*all links accessed 9/19/13

addendum, 9/20: a ZocDoc representative has informed me by email that the fee for providers is based on an annual contract priced at about $300/month, and so I have adjusted the post accordingly. (I’d originally stated that the fee was approximately $300 per year, based on my recollection of what an employee told me during the event.) – ES

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Visiting an Exhibit on Early AIDS at the New York Historical Society

School’s back in session. With fall approaching, your author has resumed teaching and attending lectures. Today I had the chance to visit the New-York Historical Society where an exhibit, AIDS in New York: The First Five Years is winding down. The display closes in two days.

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (Mario Suriani/AP) - NYHS image

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (M. Suriani/AP image) NYHS 

The opening scene, by the first room’s entrance, is breathtaking in a way. There’s a huge picture of men, countless, basking in the sun on a Hudson pier. The men looked relaxed, comfortable and healthy – blissfully unaware of what lies ahead. The exhibit takes you through the late 70’s club scene, with just a few pictures of that, and then moves to confusing and odd reports of unusual infections in homosexual men, intravenous drug addicts, hemophiliacs and Haitians. The show moves on into the early 80’s, when science steps in slowly, and most politicians keep away.

What’s clear is that most doctors didn’t know what was going on. The young men weren’t sure either. There were rumors but also credible denials about a disease affecting the community. Gradually, the city’s Department of Health and CDC started tracking the problem. There were protests, and activists, and friends helping friends to die. There was no therapy back then, except to temper some of the infections and treat the once-rare cancers we were seeing with strange frequency.

I had the fortune of walking through the exhibit today among a group of suburban high school students – kids who were born after the invention of anti-retroviral therapy. Their questions – some simple and others intense, and the relatively young guide’s recounting of her experiences during the early AIDS years, made me realize how crucial is this history. It was a terrifying health problem, then.

Yes, the historical society’s exhibit is neat and tidy. I remember, well, caring for young people who died, hopelessly. The gravity of the epidemic isn’t captured. But it’s a worthwhile review, nonetheless – especially for its bits on low-end media, like typed bulletins from the early Gay Men’s Health Crisis and early posters on safe sex. Those frank messages provided the only information some people at risk received about the emerging disease. The display includes a few passages and images having to do with patients helping patients. That was the best part.

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Visiting the Scar Project Exhibit

On Friday I visited the Scar Project exhibit at Openhouse, on Mulberry Street just south of Spring. Photographer David Jay offers penetrating, large, wall-mounted images of young people with breast cancer.

The photos reveal women who’ve have had surgery, radiation, reconstruction or partial reconstruction of the breasts. Some are strikingly beautiful. Some appear confused, others confident. Some look right at you, defiant or maybe proud. Some, post-mastectomy, adopt frankly or strangely sexual postures. Others hide a breast, or turn away from the lens.

This collection is not for everyone. The photos of ravaged bodies of women with cancer might be upsetting, if not frankly disturbing, to some who look at them. Not everyone chooses to do so.

The women’s scars and expressions are telling. Though not representative, these images reflect wounds not often-shown in medical journals, or elsewhere.

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New York City Mayor Bloomberg Promotes Healthy Lifestyle Choices

In the city where I live, it’s hard to buy a muffin at a Starbucks without stepping back from the counter and reconsidering. Swallowing 460 calories for a minimal-nutrient breakfast seems foolish.

So I eat fewer muffins than I used to. The posted nutritional tidbits, however imprecise, on the contents of pieces of quiche, slices of pizza and cups of thick soup, stick with me when I travel, and at home.

That’s me, just n=1.

Yesterday the mayor gave a speech at the U.N. He’s quoted in today’s WSJ health blog:

In a speech to the U.N. General Assembly earlier this week, Mayor Michael Bloomberg rattled off New York’s achievements: a tough anti-tobacco campaign that made cigarettes, at about $11.20 a pack, the most expensive in the nation and led to a reduction in adult smoking rates to 14%  in 2010 from 22% in 2002 (the national rate is 19.3%). A ban on artificial trans fats. Calorie labeling in restaurants. Ad campaigns linking soda consumption to obesity, and a national salt-reduction initiative.

No wonder, he noted, that life expectancy for New Yorkers has risen faster and is higher than for Americans overall, having increased 1.5 years to 79.4 years from 2001 to 2008.

These are just correlative findings. But they support, circumstantially and in my mind, for one, that public policy can impact human behavior and health.

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On Deaths in the New York City Triathlon, and Pushing Ourselves to Limits

Yesterday some 3900 people swam, biked and ran in New York City’s 11th annual triathlon in what might be a celebratory event of human strength and perseverance.

According to this morning’s paper, a 40-year-old woman suffered a heart attack during the 1500 meter swim in the Hudson. She was hospitalized and said to be in stable condition. A man, aged 64, became unconscious mid-way through the swim and was pronounced dead. The man’s death was the second in the history of NYC’s triathlon; three years ago someone else didn’t make it through the water segment.

In March, 2009, the LA Times ran a piece on Death by Triathlon. Most who died in triathlons were men between the ages of 35 and 55 years. Most of the deaths occurred during the swimming portion of the race.

Triathlon (Wikimedia Commons image)

At the pool where I swim, I see people training for the triathlon, and I admire them.

Still, you have to wonder, do people not know their own limits? Or do they choose to ignore them?


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New Fairway Delivers Fresh Produce to My Neighborhood

On the local, national and nutritional fronts:

How refreshing, in this heat, that Fairway opened a new store on East 86th Street yesterday. Coincidently, Michelle Obama’s push to eliminate “food deserts” – places where it’s hard to find affordable fresh produce and other healthy foods – was highlighted this week when several big retailers signed on to the initiative.

PHOTO CREDIT: DNAinfo/Amy Zimmer (Manhattan Local News)

There was a carnival-like atmosphere on the sidewalk outside the new store, which occupies a large, multilevel space where there used to be a Circuit City (bankrupt, closed) and a Barnes & Noble (moved). Inside, I made a rough tally of unpackaged (6 varieties), nectarines (4), plums (3), string beans (4, including a yellow variant I’ve never seen before), potatoes (11 non-sweet, +  yams and “yellow yams”), onions (7), mushrooms (5), not counting the pre-packaged kinds), peppers (11), tomatoes (9) and beets (3).

You get the picture: if you’re looking for a fresh ingredient and it’s available anywhere New York, chances are you can find it here. Downstairs, there’s fresh fish, meat, coffees, baked goods, and tons of regular and organic grocery items. I counted 22 types of pure honey, not including differently-sized items of the same brand and flavor, and then stopped. Upstairs, there’s a limited selection of prepared foods, a competitively-priced smoked fish counter, a wide cheese selection, dried fruits, nuts and more.

I spent a while meandering through, and heard only positive comments. The shoppers seemed happy; the employees registered glee. A woman next to me on a briskly-moving line summed up the consensus: “This is the best thing that’s happened to the neighborhood in years.”

We should all be so lucky –

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Good People, a New Play About Chance, Decisions and Fate

A short note on Good People, the title of a new play at the Manhattan Theatre Club starring Frances McDormand

It’s a simple story, at some level, about a middle-aged woman from south Boston who loses her job. She has a disabled, adult daughter who needs caregiving, and she needs money. She contacts some old friends, and scours the neighborhood for a job. She encounters a once-boyfriend, just for a summer at the end of her childhood, who’s become a doctor with a fancy office and a fancy house and a beautiful wife.

Frances McDorman, in a photo for the MTC

And she’s angry, angry because she’s never been able to leave her community despite, as she puts it, “being nice.” She put her daughter’s needs first and helped others when she could – or so she says, but she was too often late for work at one job and the next, because she was waiting for the daughter’s sitter, or because she couldn’t pay the bill on her car, or for some reason or other unfortunate event, as she sees it, that isn’t quite her fault.

The play’s well-executed, with firm acting and revealing details – like the wallpaper and mismatched furnishings  in the woman’s kitchen, and the spotty sportswear the women don when they go out to be sociable. Some scenes take place in a church, where the characters chat as they play “BINGO,” waiting and hoping for a lucky break.

It’s about fate, and responsibility, and assumptions people sometimes make. And it’s closing this Sunday.

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Psychology Colors and Emotions, from the Late Dr. Robert Plutchik

This morning’s med-blog Grand Rounds is up at MedGadget, where my colleague Dr. Nick Genes has put together a nice assortment of reads. One entry refers to the Plutchik Emotion Circumplex – “a wonderful graphic representation of a highly regarded emotion classification system.”

Plutchik's diagram, as featured in his book: "Emotions and Life: Perspectives From Psychology, Biology, and Evolution"

I never took psychology in college, and in med school they sent us straight onto (into?) the psychiatry wards. For whatever reason, I wasn’t familiar with the colorful schematic. Here’s what I learned today:

Dr. Robert Plutchik was an academic psychologist and author best known for his work on the nature and evolutionary aspects of emotions. He was a Brooklynite who attended City College, received a Ph.D. from Columbia University and became a professor at the Albert Einstein College of Medicine. According to an obituary in now-defunct New York Sun, after retiring he moved to Sarasota, Florida. He died in 2006, at the age of 78.

From the Sun:

He was best known for his theory, laid out in “Emotion: a Psychoevolutionary Synthesis” (1980), that there are eight primary emotions, which can to some extent be recognized in all animals. These are joy, acceptance, fear, surprise, sadness, disgust, anger, and anticipation. It was Plutchik’s insight that emotions could be laid out in a circular arrangement, much like a color wheel, and then combined into secondary emotional states. Love, for instance, was in this schema a combination of joy and acceptance. Delight was a combination of surprise and joy.

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