Sharing real stories about raising her son with disabilities helped this writer feel less alone in the hyper-curated online world. But, as she learned, truth on social media is all relative.
We urgently need your help. DAME reports the stories that need to be told, from perspectives that aren’t heard enough. In times of crisis it is even more critical that these voices are not overlooked, but COVID-19 has impacted our ability to keep publishing. Please support our mission by joining today to help us keep reporting.
On a cold Saturday morning, a few weeks into 2012, my husband and I woke up to a feather bomb. Our 4-year-old son Finn had ripped open his down pillow in the night, launching shovels full of feathers in flight around his bedroom. Yellowed goose feathers were flattened against his onesie pajamas, embedded in his hair, and stuck to his nostrils and mouth. A look of glee gripped Finn’s face. My son has always had a mischievous streak and now that he had our attention, he cackled with joy. But soon he was coughing feathers, his eyes red and watery. He’d inhaled too many.
It took hours before the room was fully swept and vacuumed. Every time we tried to move a dustpan full into the trash, the slightest movement would blow clouds of feathers back into the air. We’d planned to spend the day running errands, maybe visiting with friends, but the feathers took precedence. Dealing with the room was our new Saturday, voiding all else. We couldn’t put Finn to bed until all of the feathers were gone.
But before we began cleaning in earnest, before we picked up a single feather, I pulled out my cell-phone. I took a dozen photos of the room and took a video capturing the feathers floating through the air. I composed what I thought was an especially beautiful photo of my boy still feather-covered but now relaxed in the corner staring off into space. I did this not for posterity but for Facebook. In some strange way, only this could give me the strength to face the day and the reality that this, and days like this, had become our lives.
My son was diagnosed with autism at 18 months, but in this era in particular many mornings came with surprises. If we hadn’t properly zippered, and safety pinned, his onesie pajamas backwards we would wake to find him, PJs off, stark naked, with his wet diaper either ripped into pieces or, if soiled, with its foul contents smeared on the walls and the wall-to-wall carpet. Any books left in his room would be found ripped to shreds. We removed all of his bedroom furniture after I found him one morning balanced on top of his tall-boy dresser, clothes littered across the floor.
I first joined Facebook in 2009 and almost immediately, like every parent I knew at the time, started posting pictures of my kids, then two and four. That year my family moved from Brooklyn to Boston for my husband’s academic fellowship and it was a useful way to keep up with the friends I’d left behind. It also helped me with my own loneliness. I could bear witness to others’ lives and share small moments from my own—managing small kids in a new city, getting to take classes at Harvard.
Ten years later we’re all well-versed in the evils of social media and especially Facebook. It’s not just that Facebook steals our personal information and sells it to third parties. It’s that those who use it as I have, on a regular, sometimes compulsive basis, are creating and consuming a warped reality. We’ve become skilled at presenting a mix of professional and personal, idealized vistas coupled with hard truths to reflect some approximation of our lives, or at least how we want others to perceive us. We present these curated lives as a sort of truth, as we look on our neighbors’ pages, believing their curated lives to be real.
Thing is, I thought I was different. I thought I used the platform differently. You see, more than just a platform for people to show off their “best lives”—enviable vacations, beautiful meals, evidence of their social activism—for myself and many other special needs families Facebook has offered a profound opportunity to connect experiences that in and of themselves can be shockingly isolating. Caring for any small child at home is a deeply lonely experience. But caring for a child with my son’s level of disability is even more so. I simply had no close friends or family I felt I could call to share or vent because no friends or family could relate to what I was going through.
So pretty early on, I tried to bring my own mix of real to the platform, not just broadcasting highlights of my resume (teaching here, publishing there), but documenting the sincere joys and complications around raising an autistic son. We all need a place where we can more easily share our struggles, I wrote in one Facebook post, someplace where we aren’t pressured to constantly perform the awesome parade. I jokingly called my feed Sadbook. Tagline: because misery loves company.
This felt good for me. And I thought it might be good for others, and not just for the parents with challenging kids. If people have more knowledge of what it means to parent a child with severe special needs, they might have more empathy for a cousin or co-worker whose child was just diagnosed.
I still posted those clichéd photos of food and vacations, but I also reported on my battles with Masshealth, trips to the ER when my son stuck another inorganic item up his nostril cavity.
Reports of our IEP meetings commingled with pretty photos of our visits to the local park at dusk and our favorite diner for dinner. In photos, I could document the ups and down of our life together. Sometimes when Finn attacked me, I would photograph the bruises, bites and cuts he left on my body and face, like a victim of domestic violence. I’d then post these photos on Facebook to feel the support of community, to feel, well, seen. But within an hour, often less, feeling embarrassed and ashamed, I would delete them. I was clearly oversharing, and likely bumming people out. Who cares anyway?
I was encouraged, however, by how people reacted to my posts. “I really love the stories about your son,” one writer said when I ran into her at a writing conference. “They’re so moving.” The father of a boy with high-functioning autism said my posts gave him perspective. The more honest my stories, the more people responded.
Then I recently realized something: If I think I’m telling the truth about my son on Facebook and Instagram, I’m deluding myself. I’m lying as much as anyone. I’ve been lying this whole time.
As with my daughter, and with myself, I have wanted to present flattering photos of Finn. But where my daughter, now 14, can and will loudly weigh in of which photos of her I can share, my son has no such voice or opinion. At 12, he’s still mostly non-verbal and he’s completely without self-consciousness. He doesn’t smile or pose. He would never do this, could never do this. He can only ever be himself. He cares nothing about how he appears to others, which has also made him an ideal photo subject. He can sit focused on dropping sticks and rocks into a park drain for long stretches of time. And I can take photo after photo without him caring, or even looking up.
But I could select which photos I would share online. I would highlight those with his eyes open, his gaze steady, maybe the rare shot where he does look at me with a smile. At the right angle, and in the right light, Finn truly is beautiful. Friends and “friends” alike have commented on how much he resembles a young Paul McCartney. He has the full cheeks the cupid bow mouth the large brown eyes and soft mop of hair. Without fail, I will share those photos where that beauty is on display.
Here’s what you won’t see: images where he looks developmentally delayed, what we used to call “mentally retarded,” or just “retarded.”
I actually remember a turning point on trip to a local apple orchard when my son was maybe 3 years old. We say we go apple-picking in order to make fresh crumbles and apple sauce but we all know it’s really about the family photo op. Sipping cider on hayrides, small children sitting in a great big pumpkin patch–what could be more quintessentially wholesome and fall-like? On this particular visit, there was a beautiful late afternoon light and I was posing Finn inside a large apple crate, where he seemed happy to sit and play in the leaves. Later that night, scrolling through photos deciding which to share, I found one that captured an expression I’d never noticed on my son before, a slightly twisted open mouth grin that looked different, that looked more autistic. At the time I had a hard time seeing Finn’s diagnosis with any clarity. This photo helped me do this, but it wasn’t a photo I wanted to share.
With social media, I was able to create an idealized version of my son, writing posts that can accurately describe our days together, but accompanying these posts with photos that make him look like any other kid his age. In this online life, I could erase those aspects of his presentation, that peculiar autistic mien, that might make others uncomfortable.
I could cultivate this fantasy-Finn online. See, how beautiful he is?
I’ve believed I’ve needed to rely on his appearance, in absence of the kinds of accomplishments other parents proudly share: Their boy’s complex comic strips–so precocious; their daughter sewing a dress at age 11; a pair of sisters reading thick books at the dinner table instead of staring at hand-held screens. See! What good parents they must be.
I have had none of these images. No milestone videos of Finn’s first time riding a bike or kicking a soccer ball. None of these sorts of stories. And yet, I wanted them.
What I did have, what I could accentuate was Finn’s looks, in photo after photo, filter after filter. He has the best hair in our family, perfectly symmetrical ears, and a very cute nose. He won’t smile on command. But when he does smile, because he’s delighting in the dog barking or a spray of water at the playground sprinkler, or playing with a pile of leaves on a windy day, that smile is felt with every cell in his body. It may be brief but it knocks. Me. Out. Why wouldn’t I want to capture that on film and share that joy with everyone I know?
But along the way, I let myself believe that the only way you could fall for Finn, the only way you could maintain an interest in him that could possibly approximate my own, would be if you could see how beautiful he could be. Of course, there are photos where his mouth hangs open, and he stares off blankly into space. There are the photos with drool on his chin, a dirty shirt. A bad haircut. His face screwed up into a frown. His tongue sticking out. His finger up his nose. He doesn’t care what you think about how he looks. This is also among his strengths, isn’t it?
It does a disservice to my son, and to all children like him, to edit out these unpalatable photos, to present him only as appealing, instead of presenting the complex range of his moments
But shouldn’t people care about him anyway? Isn’t he, his life, valuable with or without this visual appeal? Isn’t his time on this Earth valuable, worthwhile, even if he can’t speak or read or ride a bike. Even if he may never be able to live or work independently. Even if he may never give back to society. Even if he takes more than he gives in taxes and services. He is worthy. His life is worthwhile. His beauty shouldn’t matter, it shouldn’t be the fare he pays for entry into this world.
An autism researcher once told me that if we keep autistic people hidden away, if we try to erase their differences, try to force their behavior into the norm, bringing them to the trampoline park as a group only when neurotypical kids aren’t there, or only bringing them into the community when they’ve learned how to conform to our community standards, then people won’t learn how to accept and support them. People will never see them as peers. These children and adults aren’t outsiders in our society; they make up our society. They should be in our midst, in all of their complexity. They are us. We are them.
I want to say that I’ll be changed by this realization. That I won’t succumb to the pressure of Instagram and Facebook to aestheticize even the hardest aspects of my life, including the pain I feel now that my son lives in a residential school, with other boys like him, and only visits on Sundays. I can’t promise this. But I am more determined to bring him out in the community without trying to explain or subdue his rocking and stimming. I’m more interested in sharing the whole of him so that people get used to kids like him, and so that he can feel the whole of him is worth being seen and known.
We urgently need your help!
Covid-19 has dramatically impacted our ability to keep publishing. DAME is 100% reader funded and without additional support, we can’t keep publishing. Become a member at DAME today to help us continue reporting and shining a light on the stories that need to be told, from perspectives that aren’t heard enough. Every dollar we receive from readers goes directly into funding our journalism. Please become a member today!
(If you liked this article and just want to make a one-time donation, you can do that here)
CONFUSED ABOUT VOTING?
We've got you covered!
Check out our state-by-state map for registration deadlines, early voting dates, and everything else you need to make your voice is heard on November 3rd 2020.