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Photo project illuminates the father-daughter relationship and the realities facing intellectually disabled women

Family album

Father captures the fear, joy, and challenge of raising a severely disabled daughter

By Katie Booth on June 8, 2015

When the photographer Leon Borensztein’s daughter Sharon was born, she appeared to be a happy, healthy baby. But as she developed it became clear that something was terribly wrong. After months of tests, Leon and his wife learned that Sharon was legally blind, suffered from a seizure disorder and speech delays, and was on the autism spectrum. In addition, her fine and gross motor skills were undeveloped and she had low muscle tone, along with other problems.

Borensztein was awarded custody and assumed full responsibility for the daily care of Sharon when she was fifteen or so. By then, her mother’s drug and alcohol addiction had made it impossible for her to care for Sharon.

The book project Sharon, which the Polish-born Borensztein hopes to publish as a kickstarter-funded photobook, is an exploration of the many challenges of single fatherhood and caring for a severely disabled daughter. His images and text provide an intensely intimate chronicle of his life with Sharon. The project not only illuminates the powerful connection between father and daughter, but also examines the realities facing intellectually disabled women, who are at high risk of experiencing domestic and sexual violence.

Sharon is now 30 and living in a group care situation with other women, yet the photographer still expresses concern for a future in which he may not always be able to advocate for her. Women in the World spoke with Borensztein about Sharon, and his hopes for the project.

Women in the World: What were some of the challenges in raising Sharon as a single father?

Leon Borensztein: It was a lot of issues. For example, as a father I wasn’t aware of certain things. When Sharon was getting her period, she was complaining of cramps here and there. I didn’t realize that a lot of women need painkillers for that, because I had never experienced it. But it’s an example of how, having a different body, I haven’t always understood her needs. 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. There’s also the issue of what will happen when I’m no longer here.

WITW: The following is an excerpt of text from Sharon. Can you talk about this passage?

Ain ex Ban, France, Aug 1988
 “We are in a restaurant and as usual, Sharon is acting out. The tension leads to yet another argument with Cathy. We are eating in silence, observing the only other customers, a large French family with a little boy at the next table. Against Cathy’s wishes I let Sharon stroll between the tables. I believe that after being in the car for the whole day she could use a bit of exercise. The boy starts to follow her, and my immediate reaction was empathy for him when I noticed something strange about his gait. After a while, to my horror, I realized what was wrong with him.

I looked at Cathy and asked: do you see?

Yes, I do, was her answer.

Cathy begged me to take Sharon out of the restaurant immediately. I did.

The nightmare came sooner than expected. It was the first time witnessing someone making fun of my baby.”

LB: Thinking about that story brings tears to my eyes, because this was quite traumatic. In those years, I didn’t have any social life, or many friends. People would say, “you can come, but don’t bring Sharon.” They were afraid of it. And her mother was not in the picture. I used to have women come to help me give Sharon a bath. For her sake, I didn’t want men to do it. So many women were coming through Sharon’s life. But she was missing the bond with a mother.

WITW: What’s your relationship with Sharon like now?

LB: She doesn’t live with me anymore, but she’s very sentimental when she comes to me on weekends. She’s saying, “Daddy, don’t go, I miss you, call me back.” For me, the last few months have been extremely different. I’m looking at Sharon’s pictures, and I can’t take my eyes off her, how beautiful she is, and how much I miss her. But then I look back at the text I was writing when she was a child, and it reminds me of the extreme frustration we had. Sharon could drive me crazy. She’s obsessive compulsive. No answer would satisfy her sometimes, and there were a lot of challenges. She was extremely frustrated, and I was extremely frustrated. Now with this project, the emotions are coming back. I’m missing her, but I feel I need my own space, my own time, and the peace of mind to not worry about something happening. But I’m not sorry for one second I spent with her. It was a lot of sacrifice, but it was my daughter. It is what it is.

WITW: How did this project evolve, and how did you approach depicting Sharon’s disabilities?

LB: If you look in the pictures like the first bath, obviously I didn’t know she was disabled, but looking at her fingers, you can immediately see she has low muscle tone, and there she is maybe ten or fifteen minutes old. I wanted to photograph her either way, without knowing she was disabled. The disability showed itself slowly. It’s not that she was born without legs, or something like that. She just had a lot of delays. She is really the most beautiful girl. It’s so difficult to tell sometimes her disability. If you saw video of her, you would immediately see it. I cannot photograph her gait, which is not very steady, or her hand movements, but when you are looking at pictures, you can see things like how she has torn paper into little pieces from her obsessive compulsiveness.

WITW: How did you cope with your own feelings of fear for Sharon?

LB: I have a long story with the white cane. I didn’t want people to feel sorry for her. I was fighting it. But once I went shopping with her. Sharon was standing there and not moving because she was afraid to walk without me. And a woman came up and said, “excuse me.” Sharon didn’t move. The woman thought Sharon did it with spite, and was ready to run her over with the shopping cart. And then I decided, you know, the white cane is as much for her as it is for everybody else to know she is disabled. It’s really to protect her.

WITW: As a photographer, what do the photographs mean to you now?

LB: Looking back on this whole project, I think when you’re in the middle of something, you just want to get to the bottom of the hill. I think I wanted to just survive and not go insane. I had spent so much time fighting my ex-wife, trying to further my career, trying to be a good father. Now I’m looking back on the pictures, and I’m thinking how difficult it all was. When the judge asked me if I would take over caring for Sharon, I was sure after one month I would place her [in care]. If you had told me it would be for more than one year, I would have laughed. But I’ve taken care of her for so many years. It’s proven to me that as humans, we have no idea what we’re capable of until we’re put on the spot. A lot of people are telling me I was heroic, or a great father, or something like that, but it’s my daughter. I did the best of my ability. I’m sure I could be an even better father, but she was happy, safe, and healthy. I don’t see it as heroic. I was doing what I’d expect any loving father would do for their kid.

WITW: How did caring for Sharon as a single father change you?

LB: It’s such a cliche, but she made me a better person. I would never have been involved with disabilities, or become an advocate. Now I’m on non-profit boards, fighting. It’s made me more generous and connected and more sensitive. You know, maybe I have always been sensitive, but she’s made me much more patient, and more understanding. It’s a lot of small things, but I think she really changed me.

WITW: Having experienced the stigma that surrounds children with disabilities, what do you hope might change?

LB: In my biggest book, One is Adam One is Superman, I show how disabled people can enrich our lives. They’re like everybody else. The difference doesn’t necessarily have to be something negative. A lot of people don’t have any idea what disability is. Sometimes I think, ‘what if every child might be born a disabled child, but slowly the disabilities would disappear?’ Parents would never take their kids and their accomplishments for granted. I didn’t take anything for granted. Every small step, we celebrated. So I think my wish is for parents to love and appreciate their children.

WITW: What are your concerns for Sharon as an adult woman with disabilities?

LB: It took along time to find a good place for Sharon. No one could give her the care I could give her at home. The way she lives now, she’s happy because there are a lot of women around her. What’s scary is I’m still making all the decisions for this woman. She was looking at her sister’s baby the other day. You could see in her eyes so much love. I wondered what she was thinking, but the emotion on her face was changing. When the baby started to cry, [Sharon] looked so fearful, so worried about what could be happening to the child. I’m sure she was feeling a maternal feeling, but I will never know. It’s extremely frustrating. On the one hand, her beauty works for her benefit because everyone wants to be near her. But on the other hand, she has a target on her back, especially for men, because she can be very silly and innocent. I worry about sexual assault or something like that. She can’t vocalize things. I worry what might happen to her when I’m not around.

To contribute to Sharon by Leon Borensztein, visit the Kickstarter page
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