For over 40 years, the Spina Bifida & Hydrocephalus Association of Ontario (SB&H), has been committed to making a positive difference in the lives of individuals with spina bifida and/or hydrocephalus.
For three days a week, Steve Kean is the Programs & Services Coordinator here at SB&H. On his own time, Steve is a passionate photographer. His latest work, Spina Bifida Front to Back marks the first time he has focused his camera on spina bifida.
Living with the condition himself gives both the work he does for the Association and this project a great deal of meaning in his life.
(Reprinted with permission from BLOOM, the Holland Bloorview Kids Rehabilitation Hospital Blog)
By Louise Kinross
“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”
Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered seating and [medical students] watched. I was looked at as spina bifida, not as a person.” Read more...