As baby Sharon began to grow, it was clear that she was not developing normally. Doctors ran numerous tests and it was determined that she suffered from numerous disabilities: She was legally blind, had underdeveloped motor skills and low muscle tone, she suffered from a seizure disorder and speech delays, and was on the Autism spectrum.
Photographer Leon Borensztein has spent much of his life documenting the human condition in America, be it a series on the working class or artists with disabilities and their creations. He began his most personal project some 30 years ago with the birth of his daughter, Sharon.
“We have been sailing through uncharted waters and it has been a difficult and very emotional journey,” Borensztein writes on his Kickstarter page. He’s looking for backers to fund a book that documents Sharon’s life and what it’s like to raise a child born with disabilities. which would be released in February.
While the project has met its initial $21,000 goal, Borensztein wrote an update June 5 in which he said he was “selling the project short and should be more thorough and attempt to produce a more comprehensive book including more images and more text.”
He said he would need to reach a goal of $31,000 by Wednesday for the book to make it to press.
“I hope that I can spread more awareness about issues of disability, single parenthood,” Borensztein said.
When Sharon was about 15, Borensztein was awarded custody after her mother slipped into drug and alcohol addiction and could no longer care for her. Borensztein took it upon himself to “keep Sharon safe. Keep Sharon healthy. Keep Sharon happy.”
It wasn’t the easiest of tasks. In an interview published by the New York Times, Borensztein discussed the difficulties in communicating with Sharon.
“I haven’t always understood her needs,” he said. “Still now, she cannot express herself. I can more or less guess what she is saying, but it was extremely frustrating. To some extent she can be abusive to herself, biting her arms because she cannot express herself. The language is a barrier.”
Last year, before Sharon turned 30, Borensztein moved her into a supported living facility, where she shares an apartment with another disabled woman and receives 24-hour care, a change that gave him the time to reflect and the desire to create this project.
But with it came the dilemma of how to present his life with Sharon.
“This is a very personal project about my daughter that I love very much and I am very protective of her,” he said. “On the other hand, I am trying to be an observer and document her abilities and disabilities as objectively as possible.”
Through all the challenges, Borensztein said he has learned a lot from raising Sharon.
“I am more sensitive, tolerant and I received a lot of love from Sharon,” Borensztein said. “She made me a better person.”