Producer and photographer Tanya Workman, right, with Charlene Guenette. Tanya interviewed and took photos of Charlene for The Difference Project.
By Louise Kinross
Tanya is a Toronto journalist and photographer who has a craniofacial condition called Moebius syndrome. It typically causes some facial paralysis, including “smile” muscles that don’t work and eyes that don’t move side to side. Over 10 years ago Tanya produced a photo series of children and adults with a variety of craniofacial differences called Face Value (I got to be one of them as I had recently lost my hair to the autoimmune condition alopecia! See below).
BLOOM: Why did you choose to do this documentary?
Tanya Workman: This piece has been living inside of me for a while. I realized that when I get stared at on the streetcar, there’s more behind it than a little girl seeing and wondering about a face that’s different: her reaction to me has an impact on the stories I tell myself about myself.
All of us carry narratives about who we are that have been shaped by the experiences and relationships we’ve had in our lives. ...That question of ‘what happened to your face?’ reminds me that others may look at me differently, and recalls other moments of being singled out. One example I share was when a classmate called me ‘Dr. Demento’ in elementary school and I felt like I'd been put in a box. When I'm asked 'What happened to your face?' it makes me self-conscious about a physical part of myself that is just one part of me.
Over time I’ve often wondered, how do I counter that? Is there a way to bring something bigger into the world to talk about how we see and tell stories about difference?
So the idea was for my own experience to be the way into the documentary, and then to talk to people who studied this stuff and people like David, who told stories about it, and other people who had a facial or other physical difference that informed their work as artists. I wanted to explore the relationship between the face, story and the self.
BLOOM: It seems that through the documentary you’re torn between wanting to tell your story as it relates to facial difference and not wanting to tell it, or wanting to move on from it.
Tanya Workman: Even though my facial difference is a part of who I am, I still struggle with that fact. I might not think about my facial difference for weeks or months and then someone stares at me and I wonder: ‘Okay, is there something I can say that can add to some understanding about what a difference is?’
I know photographers and writers who mine their own experience, or do work that’s personal in nature. But for me actually talking about something that is very obvious is sometimes still difficult.
I’ve found myself torn between being the journalist who tells others’ stories and being an artist who looks inside herself and creates something from her own experiences. And doing so publicly brought up conflicting emotions.
BLOOM: That makes sense. I read Robert Hoge’s memoir called Ugly, about being born with a tumour that gave him a significant facial difference. He said our face is our passport. What does our face mean in our culture?
Tanya Workman: The face is about expression and eye contact and how we communicate with people, and it is identity, too.
The Moebius syndrome face is described as being like a mask. I do have facial expression, just not as much. If the face is that place that reveals our emotions, but it lacks expression, it confuses people. I remember times when I’d just be sitting somewhere and someone would go by me and say ‘Smile, don’t look so grumpy.’ But this was just how I looked.
BLOOM: That used to happen when my son was young, too, because he has less animation in his face. So I’d be pulling him in the wagon and someone would walk by and say: 'Oh, is he angry?' That used to really bug me, because no, his face was just in a natural resting state. I used to hate when someone read a negative intention or emotion into it.
Tanya Workman: Yes, people can make assumptions about you.
BLOOM: In Robert’s memoir, he writes about if he had a choice of not having his facial difference, or not having to wear prosthetic legs, he would choose not having the facial difference, even though it’s the disability of his legs that affects him most in a daily functional way.
Tanya Workman: That’s interesting. When my CBC mentor Steve Wadhams interviewed me he asked a similar question: ‘If you had a magic pill that would take away your facial difference, would you take it?’ At the time, I answered it, but when I listened back to the tape we discussed why I thought it was an unfair question and not to the point.
What about if you could have not lost your hair? Would you prefer that?
On the surface, I might say yes, but practically I know my facial difference has made me who I am.
This is why stories, and how we see people, are so important.
BLOOM: What has been the most challenging part of having a facial difference?
Tanya Workman: That’s a hard one. It’s changed over time. When you’re a teenage girl, like all teenage girls, you’re worried about appearance and fitting in. If you’re a girl who looks a little different, you take things more personally or you think ‘they don’t like me because of this.’ When I was younger, it was just about acceptance by peers. And then as I got older, I think the hardest thing is remembering that I have a facial difference. As I said in the documentary, I grew up, I went to journalism school, I started a career and bought a house. You become who you are. But then when someone stares at me, I’m reminded that my face may leave a different first impression of who I am.
BLOOM: Initially you weren’t going to be part of the documentary in terms of sharing your story. Why did you change your mind?
Tanya Workman: The Doc Project and my mentor Steve were interested in me being a part of it. Steve asked me to go away and think about any key moments in my life—mental pictures of my experiences as a woman with a facial difference. Then I was interviewing an artist with a facial difference and that person said: ‘It sounds like you are interested in hearing my story for the purposes of telling your own story.’
I didn’t want to admit it, but when I listened back to the tape, I realized it was true. I’m very interested in how people’s embodied differences provide material for the stories they create, and that’s what initially drove me to start working on the documentary.
BLOOM: In the documentary, when the little girl on the streetcar asks her mom ‘What happened to her face?’ you answer in a really compassionate, measured, positive way, to try to explain it to her. But aren’t there times when you don’t feel like educating people? When my son was younger, I went to AboutFace and we learned about how we should come up with a simple explanation and also some funny comebacks when we were in difficult social situations. I think I used to do that really well, but I’ve found, over time, that I’m more put out by the need to educate people. Obviously if someone is genuinely interested, that’s one thing. But I find so much ignorance now, when I’m out. Some people can be so rude. And sometimes I don’t feel like being the mature person who takes the high road and educates. I just don’t want to have to deal with it.
Tanya Workman: One of the people I interviewed for the doc was Eliza Chandler, a fellow in the School of Disability Studies at Ryerson. She spoke about how often difference and disability can be seen by others as a problem in need of a solution. Difference is viewed as sitting in the body, without acknowledging that it is created socially and culturally.
While our stories—and explanations—may be elicited by others, we experience them in different ways, depending on where we are and who we’re with, Eliza says. For example, she might experience her disability one way when she’s teaching a class and another when she goes to the emergency room for help. The problem of sharing only one part of a disability experience is that it collapses a whole range of experiences, emotions and relationships down to a stereotype, Eliza says. The more complicated, nuanced and diverse stories we have, the better.
I think that’s at the heart of why I struggle with the question: ‘What happened to you?’
Two years ago I walked part of the Camino de Santiago pilgrimage route in Spain—about 225 km with a group, and another 90 or so on my own. At the end I met a woman from Slovakia. I really liked her and we got on, but over dinner she said: ‘It’s probably good that you went with a group for the first part of the trip.’ I said: ‘Oh. Why?’
She was implying that my facial difference might have made it difficult for me to connect with and be social with other pilgrims. We talked about this briefly, and I asked if she had trouble meeting my gaze—which I know people sometimes do—but I didn’t want to linger on it too much. The story of that trip was that I’d walked the Camino, not that I was worrying about what others thought of my face. It’s in those little moments you realize people are making assumptions about you.
BLOOM: In the documentary you talk about the series of photos you took of people with facial differences. And you say you were trying to capture the person, which is not their difference. How do you take a photo of a person as opposed to a photo of their difference?
Tanya Workman: When I think of a photo of a facial difference, I think of medical images, or images that focus on specific facial features or body parts. I think of sitting on a chair in a hospital photo studio and facing left, right and forward to get all the views. A clinical photo is like a police mug shot.
Taking a picture that captures a person as a whole is more about putting in the time to allow that person to feel comfortable enough that they can be at ease—with you and in front of you—to take off their mask. And yet, what I see and what you see and what the person being photographed sees may be different. It’s kind of like making a radio doc—everyone is going to hear something different. But you try your best.
BLOOM: Because you are a photographer, writer and producer, how did you decide what medium to use for your documentary?
Tanya Workman: Several years after I started the photo series Face Value, I became involved in a storytelling project created by Dr. Carla Rice from the University of Guelph—first as a participant, then as a facilitator. Called Project ReVision, it was a series of workshops where women with differences and disabilities were given the time and space over several days to make two- to three-minute videos about their experiences using their own words and images.
When I heard about The Doc Project, which is both a radio show and a mentorship program, I’d just finished reading a draft of a memoir by a man from Thunder Bay with a facial difference. It was the second manuscript by a person in the facial differences community I’d been asked to provide feedback on in six months (I’d also read a screenplay featuring a character with a facial difference and seen a short film about a teenaged friend with a facial difference that was made by another friend with a facial difference). It seemed to me that there was this drive in the community to share our experiences, but the reasons for doing so were layered.
BLOOM: What advice would you give to parents of a younger child who has a facial difference?
Tanya Workman: Just love your kids. Love them for who they are and as these things come up, figure out how to deal with them and what works for you. Every family is different and has its own way of doing things. I’m sure the doctors and therapists may say one thing, and people with facial differences may say another. But you have to pick what’s right for you. Most importantly, see people as more than their appearance.
The photo below of Louise Kinross was taken by Tanya Workman as part of her Face Value project over a decade ago.