PARKINSON THROUGH PHOTOGRAPHY
Safi Alia Shabaik, Personality Crash (part.), 2018, (edith: G. Regnani, 2022)
Author: Sarah McGrath – Published: 10 February 2022
“The project gave my father strength and purpose”
Safi Alia Shabaik is the US-based photographer behind ‘Personality Crash’, a visual series documenting her father’s experience of Parkinson’s. She shares what it was like to collaborate with her father on this moving project – and how it has highlighted the need for “open conversations”.
What is your photography series ‘Personality Crash’ about?
In the early stages of his Parkinson’s diagnosis, my father and I agreed to make this body of work to help bring us closer – knowing illness would eventually pull us apart.
‘Personality Crash: Portraits of My Father Who Suffered from Advanced Stages of Parkinson’s Disease, Dementia and Sundowners Syndrome’ explores the human condition when altered by disease from an intimate perspective. The work presents my family’s personal story, but also serves as a universal reminder of what it means to be human.
We noticed some changes in his facial expressions, personality traits, attention span and the development of a small tremor in his right hand. As the Parkinson’s progressed, he experienced many recognisable symptoms including bradykinesia, gait freezing, drooling, fatigue, irritability and an overall muscle rigidity. In his final year, he experienced hallucinations that presented the onset of dementia.
How did it feel to have a parent diagnosed with Parkinson’s?
It was tough to find out about the diagnosis – no one wants to receive news of a life-altering disease, for themselves or a loved one. It’s devastating. […]
What was it like to document your father’s experience?
The most challenging part of the collaboration was bearing witness to the intricacies of my father’s decline.
I literally parented my parent and would go to all ends to guarantee his visibility and dignity in the world.
But on the flip side, my father and I got to spend an incredible amount of time together. We became even closer through this journey
He was very proud of this project and collaboration.
What do you hope to achieve through your collaboration with The Parkinson’s Foundation?
Our intentions are to bring visibility, raise awareness and encourage dialogue about the multifaceted complexities of Parkinson’s disease, aging with disability, end-of-life care and dying with dignity.
The importance of teaching compassion for those living with this condition is immediate, as instances of the condition will only increase with time. We hope to educate those unfamiliar with Parkinson’s, and to provide understanding for those experiencing a similar journey
Disease, dying and the active transition from life to death are topics that are not embraced openly in our society, so I agree with the ‘death positive movement’ – that these topics should be discussed. I believe it is empowering to understand your options and make decisions that align with your own beliefs and choices. We must have open conversations about these topics to remove the stigma, create awareness and embrace diversity
Safi Alia Shabaik (photographer)
I am a Los Angeles-based interdisciplinary artist working in photography, collage, sculpture and experimental video
I have always been a little atypical. I love anomalies and oddities, things that are curious or different, and gravitate towards things that most people would choose to overlook
Safi Alia Shabaik, Personality Crash (part.), 2018, (edith: G. Regnani, 2022)*
(*) Personality Crash “It was tough to find out about the diagnosis […] of a life-altering disease […] It’s devastating. […] Disease, dying and the active transition from life to death are topics that are not embraced openly in our society […] We must have open conversations about these topics to remove the stigma, create awareness and embrace diversity.” Safi Alia Shabaik (photographer)