Documentary Project: Life with Huntington’s Disease
This project delves into my father's journey with Huntington’s Disease, a genetic neurodegenerative disorder that progressively destroys brain cells. Through a combination of scanned old family photos and new photographs, I aim to illustrate the stark contrast between his life before and after his diagnosis, which came over a decade ago.
Project Components:
Historical Context: The project includes scanned images of my father's past, showcasing his life before the onset of Huntington's Disease. These images depict his roles as a father and his time in the Navy, providing a glimpse into his vibrant life before the disease.
Current Reality: In contrast, recent photographs document the impact of Huntington’s Disease on his current life. These images capture his physical limitations and how he navigates daily challenges, including his ability to interact with his grandkids despite his restricted mobility.
Audio and Video Elements: To further convey the severity of the disease, I’ve incorporated video footage of my father discussing his past and present experiences. The audio component highlights the slurred speech characteristic of Huntington’s Disease, giving the audience a tangible sense of his communication difficulties.
Prints and Presentation: The project features scanned historical images printed on 8x10’’ photo paper and contemporary photographs printed on 17x22’’ photo paper. This presentation format emphasizes the contrast between his past and present experiences.
Project Goals:
Raise Awareness: By documenting both the visible and less visible impacts of Huntington’s Disease, I aim to increase understanding and empathy toward those affected by it.
Highlight Personal Stories: The project seeks to humanize the condition by sharing my father’s personal story, shedding light on how it affects individuals and their families.
Challenge Stigma: I hope to address the stigma and discrimination associated with Huntington’s Disease, particularly in contexts like medical assistance and support services, by making his story more visible and relatable.
Through this project, I want to show not just the progression of the disease, but also the resilience and adaptation of my father as he continues to live his life with grace and love.
