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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.

Link:
Web­site

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.

Link:
Web­site

Exhi­bi­tion pho­to and text
Large pho­to: Mark Tuschmann
Small pho­tos and text below: Whit­ney Dafoe
Lay­out: Black Ferk Stu­dio
C‑Print, framed
2023

“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.”

Whit­ney Dafoe

The Liv­ing Death
2010–2023

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.

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