I have so many goddamn pieces of almost-published writing gathering digital dust in my Google Drive because I had a flare during the revision process and never met the deadline, or the editor needed a simpler narrative or I was writing for a publication that it turns out has a habit of bailing on disabled writers mid-way through the editorial process. Some of this stuff is actually pretty good if I do say so myself and we work on crip time here so it’s fine that it’s about something that was happening two or three years ago, right?
I’ve been sitting on this one since April 2020 and I need to cite it in something else now so, whatever. Here it is.
Before March 2020, the prospect of becoming housebound was probably not something most people had ever seriously considered. The freedom to go where we want, when we want, is such a fundamental part of adult life for the nondisabled and unincarcerated majority that we tend to take it for granted, until we don’t have it anymore. Then social distancing happened and, almost overnight, millions of us suddenly didn’t.
There has been a necessary preoccupation with the mechanics of daily life as chronically healthy people have been learning how to work, socialize and shop for necessities when the very act of stepping outside your home suddenly requires planning and economizing. For people living with chronic illness, there has been an ambivalent fascination in watching these conversations unfold. There is compassion for the steep learning curve that so many are now faced with. There is pain in knowing that they had to navigate that curve alone, fighting for accommodations that were deemed unreasonable but which are now being taken up on a massive scale. There is frustration that even as their lifestyle becomes normalized, chronically ill people themselves are still marginalized within coverage of the pandemic — seemingly the only role that is imagined for them is that of noble self-sacrifice. There is also hope, that society may recognize that it has something to learn from disabled and sick communities, and that we may emerge from this crisis with a more nuanced and humane understanding of what constitutes a valid body and a good life.
Chronically ill people understand the deep current of anxiety that runs beneath all the discussions of what to do and how to do it. In the articles outlining the importance of getting dressed every day, the corresponding quarantine style hashtags on Instagram, and the proliferation of social media posts documenting new hobbies and reading lists, they recognize the fear of losing oneself in isolation. There is a sense that in losing access to the things we normally do, we risk losing who we are, says Brianne Benness, a writer and researcher who curates chronic illness narratives via the No End In Sight podcast and blog collection.
“A lot of generally healthy, energetic people are losing access to the activities that they defined themselves by,” she explains. “And we develop our identities in community with other people. It’s not just that I’m a writer, it’s that I’m a member of a writing group. So there’s this double piece where losing your community often also means losing your identity all at once, in one fell swoop. And that is a huge source of pain and grief.”
Losing the normal rhythm of your daily activities can also lead to a feeling of being disconnected from reality. “You can really lose a sense of existence when you don’t have a routine, when you’re at home, you’re not seeing people regularly, when you’re dealing with stress and trauma. It makes you feel unmoored,” says Ace Ratcliff, a writer and artist whose “veritable plethora” of chronic illnesses cause severe chronic pain and fatigue.
For many people with chronic illness, selfies have become an important tool for combatting isolation and feelings of invisibility, which raises the question of whether they can serve a similar purpose for healthy people struggling to adapt to “life at home.”
Photographic self-portraiture has a long history of challenging norms of visibility. In her digital book SELFIE, journalist Rachel Syme considers the work of Marian “Clover” Hooper Adams, a 19th-century American socialite who taught herself photography, and documented herself and her social circle. Within her self-portraits, Hooper Adams typically obscured her face; Syme speculates that this was the artist’s way of confronting the invisibility and repression she experienced in her day to day life. After Hooper Adams’ death by suicide at age 42, her widower burnt her letters and omitted her from his autobiography. Her photographs, however, survived.
In a 2016 interview with The Establishment, Syme commented on how selfies are changing the way that we look at ourselves and others: “[they] are introducing a totally new way of seeing that doesn’t necessarily turn people into objects, but rather avatars…these avatars get to have adventures, to go off and speak for you, to collect and fact-find information.”
The selfie-avatars of people with chronic illness are less inclined to adventuring, but they do mediate new forms of social connection. Jameisha Prescod is a London-based filmmaker who founded the online platform You Look Okay To Me as a space to talk about chronic illness using creative visual media. She was diagnosed with lupus in 2014 and remembers searching for information and resources on illness-specific message boards and Facebook groups. Prescod believes that shifting to more visual and personal modes of communication has allowed for a greater sense of connection.
“When I started my page, there weren’t weren’t any pictures of me. It was mostly things like quotes. Someone told me that people respond more to faces — there’s a vulnerability there and it allows people to connect with you more. So I started posting selfies and I realized that it created this sense of closeness,” she says. “Sharing images of myself and watching people speak back, and then looking at other people’s selfies as well, it helps create that sense of identity, that sense of community.”
Ratcliff has used selfies as a therapeutic tool — a way of reconnecting with reality, when experiences of invisibility have left them questioning their own perceptions. “A diagnosis hunt is such a lonely place to be, especially when you’re not actively bleeding or actively bruised, or broken in a way that people can see. There is so much loneliness in having people disbelieve you. It can make you feel like you’re losing your mind, like you’re losing your sense of self,” they explain.
“When you deal with traumatic dissociation one of the things they teach you are grounding techniques, to pay attention to your surroundings, describe the cloth that’s touching you, or to describe your breathing or count your breathing. I think that a selfie feels a little bit like a grounding exercise. Proof of existence, proof of life. It’s proof that you were in a moment in time doing a specific thing.”
Karolyn Gehrig is a writer and artist whose #HospitalGlam project has become an icon of invisible illness self-representation. In 2014, Gehrig began photographing herself in clinical spaces, using the highly feminized visual language of fashion photography. It was a way of claiming agency within spaces where she had experienced trauma and disempowerment.
For Gehrig, selfies are more than tools for self-expression and reflection; they are talismans. “The practice of making that frame and imagining myself in the frame helps me mark out a space that is mine, and remove other people from violating my boundaries,” she says.
The wider applicability of this ritual, in a world newly captivated by personal boundaries, does not escape her notice: “Now we’re grappling with other people in our personal space. Social distancing, six feet. You can take your arm out and take a selfie and see, “who’s in my frame?” If there’s no one else in your frame, you’re probably good. Take a selfie, look around. And keep people out of your frame.”
As the practices of chronic illness selfie-taking become personally relevant to a much wider audience, there is also value in examining the stigmas attached to them. Prescod acknowledges that she still grapples with a sense of self-absorption whenever she records herself, and is nervous that she may someday be accused of being “attention-seeking” or “over the top” — two labels that are commonly attached to people who do not perform their chronic illness is a socially acceptable enough way.
Gehrig links this stigma to the wider association of disabled bodies with undesirability. “We’re not used to the idea of people documenting things that are thought of as undesirable. Because we attach images to desire,” she explains.
She suggests that by engaging with this tension, we are afforded an opportunity to reconsider what and how we desire: “What can you desire more than your own life? Whether it’s past or present, we want to live. We want to survive. If we are attaching images to desire, that desire doesn’t have to be aspirational. Desire and aspiration are not the same thing.”
In a cultural moment defined by uncertainty about who we are and what our future may look like, selfies that document our isolation and vulnerability have the potential to be more than a coping strategy; they can become a tool for radically changing the ways that we assign value to our bodies and our lives.