Whitney Dafoe and Mark Tuschman
Whitney Dafoe is a severe ME/CFS patient, advocate, photographer, filmmaker and artist. He is the son of Dr. Ronald Davis and Dr. Janet Dafoe. Prior to becoming very severely ill, he was an adventurer and extensive traveller. In 2021, writer Tracie White and his father published the book “The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole his Son”, describing Whitney’s battle with ME/CFS and his father’s research to find a cure.
Mark Tuschman has worked as an international photographer for over 35 years. For many of these years, he worked as a corporate advertising photographer, doing annual reports for mostly clients in the healthcare and pharmaceutical industries before transitioning into his most recent work as a social documentary photographer.
His work has earned him a raft of international awards, including Photographer of the Year from the Global Health Council in 2010 and in 2014, the Grand Prize for social documentary in an international photo contest sponsored by Management Science for Health.
Exhibition photo and text
Large photo: Mark Tuschmann
Small photos and text below: Whitney Dafoe
Layout: Black Ferk Studio
“I think this is one of the most tragic things about the high rate of suicide among ME/CFS patients. These are people who have been through something completely unique to the rest of society and have a truly unique and profound perspective to offer the human race. When an ME/CFS patient ends their life so much is lost from the world.
We have seen the other side. And we need to stay alive so that we can join the world again and share with the rest of humanity what is really out there in the great beyond. We have an incredible understanding of what life is. How precious and fleeting it is. How little time we have. And more. These are lessons that most people never learn and we need to teach the rest of humanity how sacred the life they have truly is.”
The Living Death
As an ongoing, 13 year project focused on photographing life with moderate and then severe ME/CFS, “The Living Death” has won numerous awards for various series from a huge body of documentary work, among them the Annual Photography Awards 2022 (2nd Place, People Category), the European Photography Awards 2022 (Gold Award Winner in portrait category), the Le Prix de la Photographie Paris 2022 (Gold Award in self portraiture/portrait category), and the New York Photography Awards 2022 (Silver Awards, Professional).
As “documentary photographs of himself”, the work of Dafoe shown here represents the later stages of this enourmous documentary project: a glimpse into his life being bedridden, selected by the European Photography Awards. In making these photographs, he hopes to not only make interesting, provocative works of art that speak to people without any backstory, but also spread awareness about ME/CFS.