SPOTLIGHT: THE HEART OF SENIOR LIVING
Writer Becomes a Catalyst for Multicultural Alzheimer’s Awareness
By Sara Wildberger
She was simply researching what would become her 17th published work, the novel “The Wide Circumference of Love.” But she came across the statistic that
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African Americans are twice as likely to get Alzheimer’s. “It blew me away,” she would later tell Maria Shriver in an in- terview. (Latinos in the United States are 1.5 times more likely, she adds.) And she wasn’t alone in her shock: Few from these communities aside from some dedicated researchers seemed aware of the extent of the problem. Following that thread led her to five
years of research, the new novel, and a 2017 article for The Washington Post on this silent epidemic, stigma, and bias. “It was too late,” she writes. “I had become an Alzheimer’s activist.” That statement is from the anthology
released this autumn that she edited, Us Against Alzheimer’s: Stories of Family, Love, and Faith. The several dozen short stories, per- sonal essays, and short creative nonfi ction works come from writers like bestselling MacArthur “genius” award winner Ed- widge Danticat, bestselling PEN/Falkner Award winner Julie Otsuka, award-winning investigative reporter and On Pluto author Greg O’Brien…and the list goes on. But also represented are caregivers turned writ- ers, activists, and people living with Alzhei- mer’s. In addition to reaching out to writers she knows, she put a call out on a Facebook writing group, to ensure new voices could have a chance at inclusion. The award-winning writers, as well as a
jacket blurb from actor and fellow Alzhei- mer’s activist Seth Rogan, set the anthology
riter Marita Golden didn’t set out to become a champion of Alzheimer’s disease awareness.
apart. But more important are the stories and authors: The multicultural collection represents unjustly unheard perspectives and can help raise awareness of those frightening numbers. “Alzheimer’s is a dis- ease with global impact,” she writes in her introduction. She began supporting UsAgainstAlz-
heimer, from which the anthology takes its name, when she began attending its summits for research and found the group was aware of and supported addressing health disparities. All royalties from the anthology go to support the organization, and UsAgainstAlzheimer’s founder George Vradenburg wrote an introduction. Golden has arranged the pieces in a way
that traces the journey through Alzheimer’s, from the gradual changes and many ques- tions to the realization of what remains.
But despite the experiences of health disparities and bias, the overall message of the anthology and of her novel is one of love and gratitude. As she writes: “There is the turning to face the big
picture that is embedded in visits to the doctor, medications, exhaustion, tried pa- tience, blank stares, and the gradual inching away of memory. Where else would the big picture be if not seeded in the soil of the mundane? There is the turning to face the emotional truth that meaning springs from the ordinary. We take, and hold in our bod- ies and our hands, responsibility for another and for ourselves. We love the broken body and mind because we see in it the outline of our own fragility.” For more information and to download a free chapter
of Us Against Alzheimer’s: Stories of Fam- ily, Love, and Faith, visit
maritagolden.com.
THE ART OF RAISING AWARENESS
Few of us are in a position to reach out to a MacArthur fellow, but in working to raise awareness of your community or cause, the idea of inviting an artist, writer, or musician to visit has universal appeal. Remember people make a living through their art. Getting “exposure” doesn't count (the joke goes that an artist can “die of exposure”). Respect the value of their time and work and fi nd a way to extend at least a stipend. Here are a few more tips from nonprofi ts on how to do this with care:
• Work from shared values. The golden rule is never to let a donor, no matter how appealing, sway your mission—or vice versa.
• Look for someone already engaged in your cause or (if needed) community. • Make it a partnership. That means transparency, trust, and honesty.
• It must be part of a meaningful overall eff ort. Inviting someone from a marginalized community for a single speech or art exhibit can’t make up for systematic inequities or bias in an organization. Take a hard look and start addressing inequities fi rst. Through that process, you can discover a true champion.
42 SENIOR LIVING EXECUTIVE NOVEMBER/DECEMBER 2019
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