“It is not the fact of my disfigurement that wears at my psyche. It is the fear and self-doubt of others, their very human concern about their own social acceptability, their worry about being unloveable and abandoned, which they project onto me.†– David Roche
David Roche, the author of “The Church of 80% Sincerity,†is an excellent example of the working of the social model of disability. Roche was born with a large venous malformation on the left side of his face and neck. Surgeries and heavy radiation therapy in his infancy further contributed to an appearance that others can view as grotesque and frightening. With the face commonly being perceived as the locus of the human persona, Roche is judged as being disabled, even though in truth he meets none of the common physical criteria for disability.
Roche has for years played with this in his stage work, particularly in his signature performance, “The Church of 80% Sincerity.†Now, in his book of the same name, he works this territory with his customary wry, warm wit.
Humor is the most subversive of the arts. In “Church,†Roche uses it well to present a new paradigm for facial difference, one which effectively challenges the prevailing social definition of disability. Disability is not a tragedy or a reason for pity. It is not something to be atoned for, nor something to be cured. Instead, Roche claims, for him it has been a gift.
He shows clearly how his disfigurement brought him to a deeper level of understanding of himself and of others. Roche says, “My face is unique. My experience is universal.†And he shows how all of us have an inner sense of being flawed, a fear of being unacceptable to others.
There is no hint that Roche has transcended his perceived disability. Instead, it is clear that through it, he has come to be at one with himself. He has found wholeness through, and with, what at first seemed to be his flaws. That is the new paradigm, and it is a powerful one that flows right from the heart of disability culture.
The Church of 80% Sincerity _David Roche. Perigee, $19.95 (160p) ISBN 978-0-399-53390-7
The church of the title is not a formal organization but a concept-“the church of choice for recovering perfectionists,” Roche writes in a powerful little book that’s part memoir, part inspirational handbook. “You can be 80 percent sincere 100 percent of the time, or 100 percent sincere 80 percent of the time. It’s in that 20 percent area where you get some slack and you can be yourself.” For Roche (now in his 60s), being himself has meant coming to terms with a face so severely disfigured by a benign congenital tumor that he’s been spat at and called a monster. He was rejected from a seminary because, he was told, his appearance meant “people would not respect you as a priest.” The loss of the fathers of the Holy Cross is the general public’s gain. A performer and motivational speaker, Roche is frank and witty and incapable of resorting to sentimental pap. He’s used to people staring at him, and he admits he’s been tempted to respond to pestering, obnoxious boys by saying, “Well, my face is like this because when I was a little boy like you, I touched my wee-wee.” He’s well aware that people find him inspiring, but he doesn’t try to hide his flaws, and that makes him more inspiring.
