Shortly after Anna Grevenitis’ daughter Luigia was born, she was diagnosed with trisomy 21 - Down Syndrome. For many parents, such news challenges the hopes they harbor that their child will live a “normal” life. By her mother’s account, the now-15-year-old Luigia is a thriving teenager. As her parent and primary companion, Grevenitis knows this better than anyone in her daughter’s life.

Through their ongoing series Regard, Grevenitis invites us to observe choreographed, routinized domestic acts - bathing, grooming, preparing for bedtime - as they unfold between mother and daughter, a loving caregiver and her charge. Our welcome is conditional, though, and requires us to consider who we are looking at, and why. I spoke with Anna and Luigia about this project, and its potency as a visual exploration of spectatorship, collaboration, vulnerability.

Roula Seikaly in conversation with Anna and Luigia Grevenitis

Roula Seikaly You started photographing these choreographed interactions with your daughter when she turned nine years old. Is there significance to that age, as opposed to older or younger?

Anna Grevenitis: I came to photography late. My formative years were filled with the study and teaching of the English language and literature, but when Luigia was born--and a year later her brother--I naturally evolved into a full-time mother and caretaker. As such child-rearing took over and was so physically and mentally demanding that I only realized when my children turned 3 and 4 that I had experienced a profound loss of self in the process. There was a void, and photography came to me as the evident instrument to express it – maybe because I had been a marginal amateur photographer in my youth; maybe because the medium offered an immediate visual reward.

Photography was therapeutic and based in self-inquiry, so I effortlessly pointed my lens at my family and myself. When Luigia turned 9 years old, I recognized that she was entering this transition year where one starts leaving childhood and slowly ushers into adolescence. At that time, I also wanted to challenge myself and take my practice to a deeper level, so I decided to commit to taking a daily photo. I wanted to document what it meant for a child living with disabilities to grow up in Brooklyn in 2013. I felt there was something that should not be missed; there was something that should be shown. This body of work, PROJECT 9, is a documentary-style photo diary of my daughter’s life, and it is on-going.

Seikaly: Why photograph under such controlled conditions, as opposed to capturing more candid shared moments?

Anna: Photographing family members enables me to gain very close access to my subjects and to have a sincere knowledge of who they are. But as I am trying to capture the intimacy and vulnerability that can transpire in everyday situations, I am also very aware of my subjects’ personal space and private self. In PROJECT 9, Luigia has been shown in bare truth through candid moments, every day since she turned 9.

As I have been working daily on this body of work (photographing and editing), the presence of the audience became more and more concrete in my mind. Year after year, I have become very much aware of the potentiality for judgment or misunderstanding. It was through this investigation that the concept behind REGARD came about. I surmised that if I created fully set up performed scenes controlled through set, lighting, post-processing in black and white, I could reclaim the message and make it what I wanted it to be. I would not leave it to chance, preconceptions or prejudice. The audience would have to look at my daughter the way I wanted it to.

Seikaly: Luigia – what did you think when your mom asked if she could photograph your life?

Luigia Grevenitis: I think it makes a real difference, the photo diary. I feel happiness because I am feeling kindness and magic. There is honesty and laughter, I love my life and it is something perfect. When my mom asks me I think it is fine and that I will do it. I will take the picture with her and me. Yes, I will. When I see myself in the pictures I feel kind and nice and it is something good because it is about the time together and about who I am.

Seikaly: Are there any shared moments that are off-limits to photograph?

Anna: Before taking pictures, I ask my daughter if I can. I also make it a priority not to exploit situations. I am not looking for sensationalism because this is not what life is. I am interested in documenting. If the shared moment is mundane and intimate, and Luigia has approved, I feel that nothing is off-limits. As my daughter is growing older, her body and mind transforming into a young adult’s, there are plenty of images to be made within the sensitive spheres of adolescence. I feel lucky that photography as a medium can adapt to show deference and subtlety.

As one looks through the first years of PROJECT 9, one can see many more images of Luigia interacting with the outside world and the community (at school, at the library, on the bus…). But nowadays, she is more self-aware and less likely to agree with candid shots in the street where we live. So we’ve moved on to shooting more intimate portraits indoors. My work is a collaboration. I may be the one holding the camera, but I am not the only one making the image. As she is changing, the body of work is changing with her.

Seikaly: How has this project affected your relationship? How has it affected your family dynamic?

Anna: Every day I know that I have to take a picture. This practice has been an exercise not only in the photographic craft—being able to photograph under any kind of circumstances in daily living—but it has become a daily meditation. Because of it, I have trained myself to see depth in otherwise banal moments. I have been adding a layer of scrutiny onto the present moments I am sharing with my family. There are times when everyone is tired of me and my camera. And it is during these times that I have learned the most: to read between the lines and to anticipate when to back off and when to push a little harder. All it has become is a delicate waltz.

Luigia: Our relationship is good; it is something good. We are taking pictures together and are seen together, and it will last and go on forever. I do not remember a time when my mom was not taking my picture.

Seikaly: What do you think about your mom photographing you? What do you like, or not like, about the process?

Luigia: I am really good at taking pictures, and I like helping my mom taking photos when we take photos together. I really like it when she is taking pictures of me. Because I feel I am in a photoshoot. I feel happy and excited because I am a very good actress. I like who I am I like my life and I like everybody to see me in the photo diary. Some days I am tired, but my mom still asks and I do it.

Seikaly: What do you want viewers to take away from looking at this series?

Anna: When I started the body of work PROJECT 9, I envisioned an on-going daily meditation on the mundane humanity of Luigia, a journey that is more commonplace than not, and whose intrinsic, un-communicated profundity, is a broader one than one might perceive. As for REGARD, at first glance, it may seem that I am offering Luigia and I as vulnerable prey to the viewers’ judgment, yet in fact, I am guarding our lives, and the viewers are caught gawking--my direct gaze at the camera. In REGARD I strive to claim the normalcy of Luigia’s life, one image at a time.

Luigia: Thinking that people look at these pictures of me, it makes feel good because I like people and I like myself. When I do these pictures I am not shy or scared because I am not afraid because there is no stage, no audience and I don’t feel embarrassed. When I look at my photo diary pictures I feel loved. I like my mom’s pictures of me because it makes feel good about making a difference. I think people will like it. People want to see me through the photo and people are going to know me when they look at my pictures.

A Mother and Daughter Use Photography to Challenge the Stigmas of Down Syndrome