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On humanity, dignity and seizing opportunity: A call to action at Medicine X

The Friday mid-afternoon session of Stanford Medicine X featured three stories, each meant to jolt attendees out of their everyday thoughts, to prompt them to consider the meaning of dignity and to reflect on their shared humanity — spurring them into action.

First, from Abdalmajid Katranji, MD, a Michigan surgeon who has worked extensively in Syria, a tale of medicine in the worst of circumstances. Once, a rocket exploded several hundred yards away while he was operating using a kitchen table as a makeshift operating table. "All of a sudden... something was pulling my breath out of my chest," Katranji said. The windows pulsed out, then shattered. But most sobering to him, the Syrians in the house were so accustomed to the shocks of warfare they were unfazed by the incident that "left me deeply shaken."

The challenges facing humanitarian medical teams are immense, from the onslaught of people needing help to the logistical and political challenges of travel. But disasters, although they seem singular, are regular occurrences and our responses to them could be improved, Katranji said. The needs range from the immediate — adequate and consistent supplies and personnel — to the long-term. For example, if he performs five amputations, will those patient have access to rehabilitation in two months, or even two years?

"How do we make a local response more efficient?" he asked, flashing photos of Syrians affected by the fighting and its aftermath onto the screen.

The audience was in a sober mood when Alice Wong, an advocate for people with disabilities, rolled on stage. Diagnosed with a progressive neuromuscular disability as a toddler, she uses a BiPap machine to breathe and her presentation took the form of a video.

Wong admitted her life includes challenges that others may not face, from requiring daily assistance to using a wheelchair and a machine to help her breathe — "both strangers and acquaintances presume my life is difficult and full of suffering."

Yet that isn't quite accurate, she said. "Yes, I experience pain and suffering but that doesn’t mean my life isn’t rich and full," she explained. "Yes, I need a lot of help but that doesn’t mean I can’t make decisions about myself."

The biggest challenges she face come from the pervasiveness of "ableism," which she defined as "a form of oppression that systematically devalues people who are nonnormative" in the way they move, or talk, or think, or appear. Ableism leads to discrimination in education, housing and employment and leaves Wong and others with disabilities constantly struggling to secure admittance and acceptance, she said.

And with the advent of gene editing, the fate of those with disabilities takes on a new urgency, Wong said. The ability to alter genes passed down between generations could allow scientists to excise certain disabilities, or conditions, from the human gene pool – and that isn't necessarily a good thing, she cautioned.

"As a person with a congenital disability, I am deeply concerned about human gene editing and how disabled people have been left out of conversations about it,” she said, later adding, "For me, disability is not a terribly sad or negative experience.”

The next speaker shared a story that is, at its core, terribly sad. But before — and even while — it was sad, it was also happy, vibrant, even lovely. It began when Melany Baldwin's twentysomething son, Randy Sloan, a motorcycle mechanic, crafted a specialized motorcycle for triple amputee B.J. Miller, MD, a palliative care doctor in San Francisco (and past Medicine X speaker). It was a feat to create a motorcycle controlled with one hand and the experience led to a fast friendship between the two men, Baldwin explained.

Then, months later, Sloan was diagnosed with terminal mesothelioma and Baldwin reached out to Miller, then executive director of the Zen Hospice Project. Sloan worsened quickly and chose to spend his last days with his friends and family, rather than enduring radiation and downing medications. He was even being carried to the peak of Angel Island by friends a mere 36 hours before his death.

"My point is... to live, live, live while you can," Baldwin said. "My son’s mantra would have been 'seize the moment.' You have to be open to anything being possible."

Previously: No longer spectators, Medicine X health entrepreneurs use digital tools to create changeA call for raised voices (with everyone included) as this year's Medicine X beginsIt's back! Stanford Medicine X returns to campus and On life, death and David Bowie: A palliative care physician shares words of wisdom
Photos of Alice Wong and Melany Baldwin courtesy of Stanford Medicine X

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