NEA Funds Artist’s Exhibition of Father’s Parkinson’s Journey

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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The Parkinson’s Foundation has received a $30,000 grant from the National Endowment for the Arts (NEA) to support a photo exhibition by Los Angeles-based artist Safi Alia Shabaik documenting her father’s journey with Parkinson’s disease.

“I am humbled and elated by the NEA’s thoughtful recognition of this project through their generous grant,” Shabaik said in a press release.

The exhibition, titled “Personality Crash: Portraits of My Father Who Suffered from Advanced Stages of Parkinson’s Disease, Dementia and Sundowners Syndrome,” will include photographs, audio recordings, and objects that tell her father’s end-of-life journey with Parkinson’s, dementia, and sundowners syndrome. The exhibition will be featured at galleries in Chicago and Los Angeles.

Sundowners syndrome denotes a state of confusion that arises in the late afternoon and spans into the night, more commonly observed in people with different types of dementia.

“We are honored to be able to partner with Safi Alia Shabaik thanks to the generous funding from the National Endowment of the Arts,” said John L. Lehr, president and CEO of the Parkinson’s Foundation. “Shabaik’s work provides a sense of understanding to the million Americans living with Parkinson’s and their caregivers and helps educate those unfamiliar with the disease.”

Shabaik — in collaboration with her father, Aly H. Shabaik, who was an engineering professor at The University of California, Los Angeles — set out to document the intimate and human struggle of Parkinson’s since his diagnosis. She eventually became his primary caregiver.

“I am deeply honored to partner with the Parkinson’s Foundation to exhibit Personality Crash, celebrating the intersection of art and science while bringing visibility to an underrepresented ailing demographic and encouraging discourse on the intricacies of disease, end-of-life care, and dying with dignity,” Shabaik said. “My father would be proud to know that his struggle with disease will now become something life-affirming.”

The grant, part of the NEA’s second round of Grants for Arts Projects this year, is among the more than 1,100 projects funded across the U.S. totalling nearly $27 million.

“As the country and the arts sector begin to imagine returning to a post-pandemic world, the National Endowment for the Arts is proud to announce funding that will help arts organizations such as the Parkinson’s Foundation and Safi Alia Shabaik reengage fully with partners and audiences,” said Ann Eilers, NEA’s acting chairman.

“Although the arts have sustained many during the pandemic, the chance to gather with one another and share arts experiences is its own necessity and pleasure,” she added.