Monday, June 6, 2016

“Human Library” is About Stories, Not Diagnoses

Naturopathic student Sonia Malani shares a first-person account of the annual event that aims to help student practitioners challenge stereotypes and better understand people from communities often marginalized in the healthcare system.

Library card with book titles typed out

On May 25, 2016, students gathered at Bastyr Center for Natural Health for the sixth annual Michelle Eustache Human Library event. Offered through the Bastyr University Center for Social Justice and Diversity, the event aims to help student practitioners challenge stereotypes and engage in meaningful dialogue with people from communities often marginalized in the healthcare system.

Read more about the experience from Sonia Malani, a student in the Doctor of Naturopathic Medicine program, who shares this first-person account of the event:

Everyone Has a Story

I entered the Human Library with very few expectations. The premise of the night, as I understood it, was to provide student clinicians a safe space to interact with those who fall under social prejudices or stereotypes. Books were swapped out for community members who volunteered their life stories to be “read” by those in attendance.

As a self-identified extrovert, the notion of spending a night interacting with a spectrum of perspectives excited me. My natural curiosity for the human experience is what confirmed that naturopathic medicine was a perfect career for me. Everyone has a story to tell and more importantly, everyone has a story that deserves to be heard.

However, little did I realize that once I entered this Human Library, my own perspective on life would be both challenged and liberated in the short span of two hours.

"I Wasn't Sitting in Front of a Diagnosis"

I arrived promptly at 5:15 and was directed to the front desk where I was told what books I would be taking on loan for the night. Book 1: Cerebral Palsy. Book 2: Transgender Male. Book 3: HIV Positive Male. Despite my aforementioned keenness to connect with others, the titles on my library card weren’t exactly the non-fiction I had been used to reading.

Book 1. I walked in the room and saw that there were already two other students sitting down. I made my way to the empty chair and looked up to find a dyskinetic woman in a wheelchair. She was wearing a floral shirt, bedazzled tennis shoes and a smile that radiated joy. As a second-year medical student, I searched my brain for the pathology of cerebral palsy that we had just covered in my Clinic Diagnosis class earlier that week.

Cerebral Palsy... characterized by impaired voluntary movement or posture. Multifactorial Etiology. Other common problems include feeding difficulties, speech impairment, intellectual deficits...

Before I had a moment to finish my thought, I began to hear a computerized voice coming from a device attached to the wheelchair. The science no longer mattered. I wasn’t sitting in front of a diagnosis; I was sitting in front of a person and it was time to hear her story. First thing on her agenda was setting up some ground rules: “when talking to a patient in a wheelchair, always speak directly to them. Don’t talk about them as if they are not in the room. Never pat someone in a wheelchair on the head. And please be patient with me.”

I thought about all of the times I had unknowingly made these mistakes. I reminded myself that my book wasn’t here to scold me for my ignorance, she volunteered her story in hopes of helping the future patients I serve.

She went on to tell us about how she had been born with cerebral palsy and in spite of it had attended college, published poetry, sold her artwork, served as a peer counselor, survived breast cancer, and fallen in love. I was overtaken by emotion by the end of the first chapter. I had to keep reading.

Out of pure curiosity, I walked over to her chair to get a closer look at her mode of communication. I learned that she had custom designed a wooden addition to her wheelchair for her communication device. I suddenly began to feel tears well up in my eyes.

The clinician in me told me to pull it together. I can’t cry in front of her, I’m supposed to be a doctor one day! I realized that these weren’t tears of sadness, they arose out of the genuine amazement I had for her strength. She wouldn’t let anything stop her. Books 2 and 3 were no different.

A Whole Person in Chapters

To put into words how that night shifted my thinking would be a disservice. The emotion and compassion I experienced for my books is something that I will take with me into every single one of my future patient visits. For me, it wasn’t about dispelling prejudices, it was about being reminded that the human experience is universal.

Each one of my books had a chapter about love, heartbreak, obstacles, achievements, and most notably resiliency. What I discovered while reading was not what set me apart from my book, but instead everything that we had in common. I saw each one of my books light up when they spoke about their passion and heard the courage in their voice as they spoke about their hardships.

Book after book I was reminded that in order to treat the whole person, it isn’t about getting a full symptom picture, it’s about being open to reading their story and all of the chapters written prior to their arrival in our office.