Grant Writing Exercise - Summer 1 Project (Documentary)

Logline: 46 year old, Joel Bentley, is the oldest male living with the rare disease, Lesch-Nyhan Syndrome. This intimate portrait documents a day in the life of this extraordinary human who just so happens to be in a wheelchair. Short Description: Documentary short film, Man with Mittens is an intimate look into the daily life of the oldest man living with Lesch-Nyhan Syndrome. The average life expectancy of those living with this disease is mid-20's; Joel is 46. LNS is extremely rare and stems from a mutation of the X gene on the mother's side. Although documented occurring only in males, there have been 6 cases of females. Lesch-Nyhan is unique in its cruel attributes of uncontrollable self-mutilation, such as head banging and finger biting (sometimes off). Mittens are worn to prevent self-harm and restraints are bound to their wheelchair and bed frame. This documentary is not your talking heads informational film about the disease, rather the man living with the disease. Humanizing this incredible person and longtime friend is my primary focus. The time has come to de-stigmatize those with disabilities. Director's Bio: Meg Lansaw is a veteran filmmaker who has made seven short films and worked on nearly 100 productions over the past two decades. Lansaw served two terms as Secretary of the Board of Directors for Cucalorus Film Festival, during which she was chair of the Programming Committee. She also co-created and coordinated the grant funded outreach program, Cucalorus Kids! Lansaw is currently working towards her MFA in Film Studies at the University of North Carolina in Wilmington, where she is also a Graduate Teaching Assistant. Her fond hope is becoming a Film Studies Professor on the collegiate level. Artistic Approach: Since my subject is mobile via wheelchair, I plan to shoot primarily handheld. Some coverage will be captured from Joel's point of view to demonstrate the angle he sees on a daily basis. Although footage of his housing will be recorded, majority of filming will take place outdoors. Joel enjoys walks with his Dad and is often referred to as the Man in the Mittens. After 46 years, many have never bothered to learn his name, and cross the street when they see him. I want to capture these moments to demonstrate the reality of life as a disabled man. Context & Influences My biggest influence in making this film is the subject himself, Joel, who has Lesch-Nyhan. We met my senior year, of high school and hit it off right away. I would often eat lunch with him and worked in his classroom as my elective course. I became very acquainted with LNS and how It's crucial to modify your own reactions to unfavorable behavior by not acknowledging it. Drawing attention to it increases it, so you simply change the subject or hold his hand. He is often aware when he is about to self-harm and will request his restraints. Desired Impact: People often avoid interactions with those who have disabilities due to feeling uncomfortable. My goal is to destigmatize that train of thought and to humanize those with disabilities. Since Lesch-Nyhan is extremely rare, I hope to raise awareness about the existence of this disease and to help families to break through the isolation caused by the social judgements placed upon their loved ones. Those with disabilities are also underrepresented in the film world and hope this project will encourage those with disabilities to watch the film and see themselves just as humans, like everyone else.