/ʁə.ɡaʁ/ verb 1. To consider or think of (someone or something) in a specified way.

“When my daughter was born, I was told that she had the “physical markers” for Down syndrome. A few days later, the diagnosis of Trisomy 21 was confirmed with a simple blood test. Today, sixteen years later, Luigia is a lively teenager, yet these “markers” have grown with her, and her disability remains visible to the outside world. As we try to go about our ordinary lives in our community–getting ice cream after school, going grocery shopping or walking to the local library–I often catch people staring, gawking, or side-glancing at her, at us.

Even though their gaze feels invasive, I perceive it as more questioning than judging, at least most of the time. With this on-going series REGARD, I am opening a window into our reality. To emphasize control over my message, these everyday scenes are meticulously set, lit up; they are staged and posed. The performers are my daughter and I. The portraits are purposefully developed in black and white, for by refusing the decorative and emotionally evocative element of color, I aim to maintain a distance between us and them. The composition of the photographs expresses routine, domestic acts in which I address the viewers directly: look at us bathing; look at us grooming; here we are at bedtime; this is us on a random day at the beach. In each scene, the viewers are plunged into the outside perspective. At first glance, it may seem that I am offering us as vulnerable prey to their judgement, yet in fact I am guarding our lives, and the viewers are caught gawking–my direct gaze at the camera.

My series is very basic in its concept: it shows a child, it shows a mother, it shows them living at home, performing familial acts. Because I believe in the connective power offered by the depiction of domesticity, I hope that REGARD helps the audience rethink some of their assumptions about people living with disabilities and with this, I hope my series finds a humble spot within the movement that helps people with disabilities gain visibility.

Anna Aude Grevenitis

Brooklyn-based artist Anna Aude Grevenitis found photography in a meandering way. Her formative years were filled with the impassioned study and dedicated teaching of the English language and literature, but when her daughter was born–and a year later her son–her world naturally morphed into full-time mothering. Drawing on these experiences to inform her practice as she was teaching herself the medium, she effortlessly pointed her lens at her family and herself. In her daily introspection, she searches for meaning with her camera. Anna Grevenitis is interested in photography as an act of establishing visual memory and engaging in social visibility, over time. Her photographs have been exhibited both in the United States and internationally. Anna Grevenitis’ work has been featured in The New Yorker in “A Mother’s Steely Portrait of her Daughter’s Life with Down Syndrome.” In 2020, for her series Regard, she was the recipient of the 17th Joyce Elaine Grant Award, the 2nd Annual Foto Awards and became a Critical Mass Top 50 Winner and a finalist of Lensculture Black and White Photography Awards 2020.

Text & interview by Capella Buncher

Anna Grevenitis’ compelling project Regard captures portraits of her and her daughter living life in their New York neighbourhood. A few years into motherhood, Anna made the unsettling realisation that she was experiencing a profound loss of her sense of self. She began to fill this void with photography as a form of expression and a way of dealing with the sensation.

Anna has two children, a son and daughter. Her daughter, Luigia, has Down syndrome and is the focus of her photographic work. The project of capturing her daughter has been through a few configurations – in the beginning she used the more classic form of candid photo documentary, but after wrestling with the ethics of the style with respect to her daughter’s disability, the collaborative Regard was born.

Regard is staged, stylized, controlled and collaborative between mother and daughter, with the defining feature of Anna’s flinty stare emanating out of each shot. It is the expression she throws to the unwelcome examinations of her daughter from the eyes of strangers on the street. The pictures are tender, confrontational and mundane – the last adjective being the crux of what she is striving to show: that being a teenage girl with Down syndrome is, in many ways, a typical pubescent experience – and actually exists – despite the fact a lot of mainstream media and entertainment may lead you to believe the opposite.

Below is a conversation I had with Anna about her work.

I am really interested in the duality of the project. The fact that starting to shoot your quotidian reality was ignited by the acknowledgement of a profound loss of your sense of self, yet the product of this realisation seeks to educate society on the normalcy of disability. In this sense the project is both personal and societal. Could you please tell me a bit more about the relationship between these interiors and exteriors in Regard?
In any transition into motherhood, women could relay a sense of loss, a sense of shedding an old skin and getting used to wearing a new one. This is not new. But when you are catapulted into the world of disabilities through the birth of your first born, something deeper happens. You also lose your sense of place. You are disoriented, you do not know anything, and it is hard to find similar experiences around you. You start living a parallel life. You have a young child just like your friends or family members who have young children, but yours is not sitting yet, yours is not teething yet, yours is not speaking yet. You start building a shell and learn to listen more and share less. It happens naturally. And it is nobody’s fault. It is just a fact of life. Right now, my daughter is 16 and it is still happening. My friends tell me about their daughters applying to college while I am laying down with mine every night for her to go to sleep. It is an experience in motherhood that can feel more isolated. So, you could say that with Regard, I reclaimed all these silences and I am saying it the way it is for me.

How has Regard helped you regain your sense of self?
Continuing from the last paragraph, I feel that Regard gave me a voice. I felt empowered through making these images about our life together. I felt that my life was important because I was doing something to show my daughter to the world. As I was trying to protect her and show her to the world, I gained a voice and showed my truth to the world as well. There is definitely a before and after Regard in my sense of self. I am actually feeling ready now to start working on a personal project that is only about myself. I could not have approached this before Regard.

Despite being very new to photography, I personally have experienced that shooting my parents and siblings and mundane family life has a very real impact on our relationships. It is therapeutic and bonding. I have found that there is something about observing the most familiar and banal of sights through a lens, that allows you see things in such a different way. I don’t know if it is the distance, the clarity, the focus – or what – but I would love to know more about your experience of shooting your family life – the mediative, therapeutic, and connective side. Alternatively, what have the challenges been? 
I have found it extremely therapeutic as well. It did not strike me as such to begin with. I was actually quite annoyed that I was “just” taking pictures of my family—I may have fantasized becoming an intrepid street photographer or a world-travelled photojournalist working on commissions—but what affected me and what I became well-versed in as far as image-making ended up being what was right in front of me. It was all in the spheres of the domestic. I realized that I was able to see a complete mundane scene: tying a shoe, sipping on a cup of tea, walking a dog, with an emotional freshness in my eye that would move people around me…even when they just participated themselves in the very scene! And since I could not honestly leave my family to go shoot across the world, I stayed focused on the here and the now. As I am making images every day, I am entering what some may think as a meditation zone. I feel really quiet inside and I just create. A few times recently I actually reached out for my camera right after hearing difficult news with the intent of making images to pull through, to be helped through. So photographing has been therapeutic not just looking back but while experiencing struggle and pain. The challenges I encounter are internal: so often I must remind myself that what I do is important and that it is art and it’s the process that matters. It is hard to find excitement everyday about the ordinary. And also, my family is at times tired of me and my camera. Do they feel put upon? Maybe. I work hard at not “interfering” with family life. I pride myself about being a fly on the wall, but intimacy is precious, and I can see how at times, they just want a mom. Recently we went for a walk in a nearby park on a strikingly beautiful winter day. The shadows were dramatic, the sky emerald blue. I saw pictures everywhere. And then I mourned their loss: on purpose I had not taken my camera with me so that I would just enjoy the moment with my family. The jokes, the laughter, the chatter. And I did. Now I remember that day because I was a participant, not an observer. I am learning to do this more and more. And they appreciate it too.

In fact, one of the important aspects about shooting your own family is the documentation of memories – something that is very personal and separate from the decision to make the photos public. Again, there is that duality of documentation and intervention. Which side of this project drives you more – the personal documentation or the societal project? Are there any conflicts between the two?
I think this question occupies the minds of most “memory-photo-documentarists”. What will be the tipping point that will make us decide to publish what was until then only family memories? I think for me it all depends on the editing part of the process. In the editing you find a story, you find a nugget you want to explore more. You can explore it visually, narratively. If the nugget is there, then why not publish it? I see our type of photography very similar to the memoir genre in literature. And the same question can be asked to memoirists: why tell everyone about your family life, your family secrets? Is it to speak up? Is it to inform? Is it to ask for a change? Where conflict can arise more evidently in photography than in writing is that the image reveals the person’s identity. There is no hiding behind a change of name. Thus, there is a lot to consider while making our private space public, even when our intentions are good.

Your confrontational stare casts us as ‘the gawking onlooker’ that you have frustratingly experienced numerous times in everyday life. The stare engages us in your performance too, why did you feel this participation from the observer was important?
I was trying to add some theatrical dynamics into the photographs. Documentary photography is very effective when the viewers feel they are in the room. They are the fly on the wall now. Through the photographer’s lens they get to see something they would otherwise not know about. Indeed, the very skilled documentary photographer is often letting them in on a secret scene. I did not want to just offer the viewers an easy way into our lives. What my daughter and I experience when we are outside in our community is intrusive on the part of the outsiders’ gaze. They gaze at us, at my daughter. And we cannot do anything about it. We are passive. What I tried to do by using a staring back gaze in Regard is ask the viewers to take some accountability. With the gaze I am telling them I see you gawking. I do not let them off the hook. They are active in the act of peeping. I feel closer to the truth of what is really happening when I stare back at them. If I just set the scenes up and photographed them without looking back, the viewers would not have the uncomfortable experience of recognizing their role in the act. By me staring back, I gain acknowledgement.

In your own words, can you describe the stare that you are radiating out of the photographs?
As I am performing, I look in haste at the camera, all along mentally calling out the imaginary passer-by who is staring at us. “Really?” When people stare, they intrude into a conversation, they interrupt a thought, they interfere with a flow. That is what my gaze back is trying to convey. The interruption.

I know that Lulu adores being captured and has even started to direct and shoot herself, but I would like to know more about how Regard has affected her – especially as she is in such sensitive and formative years. I know you are interested in the passing of time and development – what transformations have you noticed in Lulu?
Lulu has been aware for a few years now that she is a young person living with Down syndrome. She is also a teenager so she is trying to process this information and at the same time is being propelled onto her own hormonal roller coaster and her mind is being overrun by the outside world of seemingly perfect adolescence projected in the media. So she will mention how a friend or a person in the street has Down syndrome (she is on the lookout when we go out, she is looking for similarities in other people) but she also will claim now and again that she has changed now and she doesn’t have Down syndrome anymore. It is obviously all part of growing up and understanding what it all means to her personally and what this signifies about her vis a vis her peers. But what strikes me as interesting is how easily one can fall into the trap of self-hate because there is actually no representation of people that look like you in the media. We consume images on a daily basis, if these images are never of someone like you, you know the damage this will create in a young developing mind. Lulu had enjoyed very much “being published’ whether it was in the New Yorker, the Evening Standard or other small press publications. For each publication I show to her, she declares “we’re famous,” but I think what’s helped her self-esteem the most so far is seeing other young people with Down syndrome in the media. In one show we watched together, the main character’s love interest’s sister is a cool young adult with Down syndrome who has her own fashion line. When Lulu saw her, she screamed from excitement and since then I sometimes refer to “how cool and strong Rebecca is” when Lulu feels uncertain or insecure about herself and it usually cheers her up. She has someone to look up to.

I saw that your Instagram bio was a Virginia Woolf quote – “Photographs are not an argument; they are simply a crude statement of fact addressed to the eye.” – I just wanted to know your personal connection with the quote and how you feel it relates to your work?
Am I allowed to show a pain that is not mine? I have been mulling over this question for years now. And because of this I have been reading texts that deal with the ethics of photography. I found this quote by Virginia Woolf while reading Susan Sontag’s Regarding the Pain of Others. I am not a person who is living with Down syndrome, how can I portrait my daughter’s joy, pain, her day to day life realistically?   Should I portray it realistically? What is my role as the photographer? What about the power struggle between photographer and “subject,” especially when the said subject has developmental disabilities? Am I exploiting her? When I read this quote by Virginia Woolf, I feel reassured by what it reveals. I feel summoned to make my photographs “a crude statement of fact addressed to the eye.” If I remain true to my subject, I can achieve that perhaps. Now that Lulu is older, we talk about the pictures I am taking of her, we talk about the pictures of Regard that we are making together. It is easier for me to feel comfortable to show her truth.

Why do you think documenting the mundane, ordinary, and domestic is so interesting, insightful, and revealing?
I find the domestic a fascinating sphere because of the dichotomy at its very center. As humans, we all experience domesticity. It is part of who we are. But each and every one of us experiences a different kind of domesticity. Domesticity is what both brings us together and sets us apart. Everyone eats, but how differently we all do it! I use the mundane as a bridge between our life and yours. If I can show similarities to your life through my images, you may be more inclined to understand our differences.

Control is a defining feature of Regard – why was it so important to establish and maintain that control?
Through documenting my daughter’s life, I felt that at times my message could be misunderstood or even hijacked. I was leaving her open to criticism or prejudice. It is through several photographic and narrative devices that I use in Regard that I managed to reclaim control over the message and over her protection. Firstly, we are the performers, so off the bat I put the scenes into the realm of fiction not reality. Second, the scenes are in black and white, so I do not offer the viewers the ability to emotionally empathize with what is happening. And finally, with my gaze, I make sure again that the viewers stay in their role of “the one looking in.”

It clearly is essential to highlight the normalcy and existence of life with disability. What would you say is the overarching societal view of and action towards disability is in the US?
There are a few examples I would like to talk about regarding inclusion in the arts. Via social and digital media, the disability community has found innovative ways to reach many more people than through traditional media. Radical Beauty Project only features models with Down syndrome. Culture Device put together, among many other projects, a dance performance of the Rite of Spring: every dancer had Down syndrome. Drag syndrome showcases fierce Drag Queens and Kings with Down syndrome. When allowed, people with Down syndrome will smash into pieces the stereotypes they have been unwillingly attached to, each and every time. More recently I was made aware of a movie called Innocence in which actors with Down syndrome are playing people with Down syndrome. You may wonder how revolutionary is that? Well, the story is not a classic redemption story or usual feel good story. It is “a crime thriller in a care home where a young man with Down syndrome becomes the primary suspect in the ensuing case.” Writer and director Ben Reid explains that he wanted to make a movie where actors with Down syndrome were given the opportunity to play real adult roles afforded to other people in society. Bethany Asher, actress with Down syndrome, says about her acting: “I don’t want to be treated like a little girl anymore. I would like to play lots of challenging characters.” These few examples I have seen over the years made me think “yes I can see Lulu having a fulfilled life, there is possibility.” Sometimes you just need to have some hope in a future where your child could be living the best life she possibly can. However unsurmountable some obstacles may seem, I still feel that today is an exciting time for people with disabilities, or at least it is a dynamic time.

What do you want people to take away from your photos?
Because of some recent press, Regard has been afforded more exposure, and so people have reached out to me and thanked me for making space for our community. Messages are often from family members, sometimes from people with Down syndrome or people living with other disabilities. It is immensely moving and humbling to feel that Lulu and I have touched people and sometimes gave them solace and hope. But I also still hope that my series may start conversations about disabilities, visibility, and representation among people that are not directly affected by disabilities. Ableism is real and intersectionality will only work when it includes the population which has been the most often excluded through discrimination and privilege.

You have speculated on the fact the project may have ‘a sell by date’ – what are your hopes for the future of the project?
As Lulu is maturing my role is evolving. Our lives are intertwined and as I said before Regard says as much about me as it says about her. There may be a time when I will be less of an actor in the pictures and more of a spectator, still present but in the background. That is what I am seeing as far as the process of this on-going series is concerned. Now, as far as exhibiting, if I allow myself to dream big, I’d like the project to be broadcast on a wider scale and in the streets. As part of bringing people with disabilities into the public sphere, not just physically but also with tangible media visibility and inviting everyone into the conversation about fair representation. Let people with disabilities be seen!