Sitting is The New Smoking: A Hunchback's Reckoning with Disability

The first time I heard the phrase “Sitting is the new smoking”, I couldn’t figure out why I knew it was wrong. As with many autistic people, I rarely know exactly how I feel in the moment, so I needed time to process.

The phrase made me feel a little icky, because I am someone who needs to sit sometimes due to chronic pain. There are people who are wheel-chair users who need to sit even more than I do. There is a whole spectrum of disabilities and conditions that require sitting.

And yet, someone out there decided that it would be a good idea to start a marketing slogan against a sedentary lifestyle and equate this posture to the actively harmful act of breathing in tobacco smoke. 

As usual, my feelings gradually progressed to anger at the idea that an entire swath of people could be so callously overlooked. Which I suppose is just how it is. 

As Amanda Leduc writes in her book Disfigured: On Fairy Tales, Disability, and Making Space, a fairy tale begins with a problem. For Leduc, that meant her parents observing that by 17 months old, their daughter hadn’t started walking. For me, that meant I developed a hunchback at the age of 12. In most fairy tales, we see a good and pure hero, one who is beautiful on the inside and out, and a villain. You can spot the villains by their age (if they’re a woman), by their beastly appearance, by their hunchbacks, and by their limps. In the beginning, our heroes long for something or find themselves in a quandary, and accordingly, they learn lessons along the way and are transformed from a problemed way of being to what is right. Leduc says it best, “Why, in all of these stories about someone who wants to be something or someone else, was it always the individual that needed to change, and never the world?” (Leduc, 12)

Leduc addresses the myth of The Changeling, a child kidnapped by fairies and replaced with a fairy child. This supernatural belief helped to explain why a child behaved, looked, or functioned differently than the children around them. If a child didn’t learn how to walk at the usual time, that child may be called a changeling. If a child was a changeling, one of the “cures” was to abandon that child to the forest, or to the fairies, as the belief goes. Being “strange”, or “weird”, and living with what we might now call disabilities could earn you a “changeling label”. Autism, with its myriad of presentations (such as talking late, or not at all, repetitive activities, meltdowns, and shutdowns), was perhaps most indicative of a fairy child. I was a high-masking, unsuspected child, and so likely would not have found myself eaten by predators in a deep dark wood, but “how many lives have been smothered or disappeared or haven’t been allowed to flourish because of the stories we tell?” (Leduc, 54)

In 6th grade, the Spring after I developed my hunchback, a.k.a. scoliosis, we had a knighting ceremony at school. We were learning about the Middle Ages and one of the final projects of the year was to complete three challenges for which we would be knighted. The guidelines for these challenges were: 

1. Something for yourself

2. Something for your family

3. Something for society 

I was excited and eager to take on these three challenges. I came up with ideas about writing more, cooking dinner for my family and volunteering at animal shelters. 

After my diagnosis of scoliosis that same year, I had also started a program that included wearing a brace for 23 hours a day, a very restrictive diet, daily exercises that involved personalized stretches, stairstepping while looking at vertically striped wallpaper in a water-weighted traction device, and almost-daily baking soda baths. 

My well-intentioned teacher looked at my ideas for my three challenges and told me I didn’t have to do three, that one would be enough for me and that it should be my exercises, diet and baths. When I asked how it would be relevant to society, she said that the doing of these exercises, and a healthy, happy Annika, was for the good of society. It was one of those things I felt uncomfortable about, but I couldn’t figure out why at the time, or for many years after. 

Leduc recounts a story in Disfigured, one that made my experience in sixth grade make sense: 

In an April 2019 article for Bustle, Imani Barbarin recounts going to a ballet class when she was seven. ‘I wanted to develop art,’ she wrote, ‘but the teachers just wanted me to be seen. I wanted to be challenged, but no one challenges those born with “challenges.”’ Thus does the less of the disabled body become more in the eyes of the able-bodied world. The disabled body cannot meet the same bar as the body that is not disabled, and so the bar is lowered. When the disabled person meets the expectations of this new, lowered bar, they are cheered and congratulated. (Leduc, 58)

Ultimately, my scoliosis could not be cured. And I was lucky because I did not experience some of the bullying that many in my place receive while growing up. My teacher spent time explaining to my classmates why I was out of school for a few days while I got my first brace. No one was mean about it. I never wanted to be “like everyone else”, as so many do, and so the idea that I was “different” because I wore a brace wasn’t something I concerned myself with. I was content, and even more comfortable socially, with my brace. 

The label of “disabled” is a newer one for me. No one ever said “disabled” in relation to me growing up and in my early adulthood, because I think I seemed able-bodied, despite my brace. I don’t know if I was “lucky” not to have been explained as “disabled” in my early life. There may be something to not “labelling” children too early, but it’s a razor’s edge. Not knowing that I was disabled may have created a certain kind of confidence in myself that I may not have developed otherwise, but who really knows? That inner confidence might have been part of me no matter what. But not knowing that I was disabled also made me push through pain, overwhelm and autistic burnout in ways that sent me into years-long bouts of suicidal depression. No one can ever know what is “right” for a child in the moment. And I’m not saying that my experience was “wrong”. It just was. 

The first time I was called “disabled” was when the mother of the woman I loved told her she couldn’t be with me because I was disabled and mentally ill. I recognized her mother’s words as self-reflective. I watched as my erstwhile love was pulled into her mother’s mental illness in the very way her mother feared I would hold her back. I refused to accept the label of “disabled” then. As time passed and things once mysterious about myself became known to me, my relationship with the word disabled changed. It now helps me understand that I am strong and that I need rest and that I don’t always have to push through the way I tried to before. 

Just a few months ago, I was a bridesmaid in my sister’s wedding. It was a beautiful multi-day event, but the part I was most worried about was the ceremony. The other bridesmaids and I would need to be standing upright for an unknown amount of time—the ceremony was lovingly written by two dear friends of my sister’s and her husband’s. I prepared as best I could. I wore a corset, a supportive undergarment I wear when I choose not to wear my brace on special occasions, and I took many Advil. I knew standing for that long would be challenging. I’m capable of the standing, but the staying upright and in one position for more than a few minutes was not possible. And I was right. A few minutes in, I was uncomfortable. A dozen minutes, and I was in pain. I leaned over at the hips to traction my back, I reinforced the derotation and adjusted my ribcage as subtly as I could every couple minutes. It became all I could think about. The photographer, along with every wedding guest, noticed that I was “uncomfortable”. In whispers, she offered to get me a stool to sit on. I did not want to detract from the ceremony, although I knew I probably already had. I gratefully accepted the stool and sat for the last half of the 45-minute ceremony. Sitting was not the cure for the pain, I knew it wouldn’t be. But it did help. I almost cried at the kindness of this thoughtful accommodation because I remembered the little girl I was, whose feet hurt every day, that no one really believed. I was never brought a chair then, but I would take a seat when I needed it, to the dismay of the grown-ups who wanted me to “participate”. And here I was, an adult, whose needs were being met to a remarkable extent. I was so worried that my sister would be upset that I ruined her ceremony for sitting down, but she was just happy I had a “little seated moment”. 

I am a forever hunchback, like the witches of lore, and I am okay with that. I am someone who needs to sit down and someone who will likely need to be medicated my entire life, and I still wear a back brace every day. I am not as okay with the many cascading musculo-skeletal issues that come with scoliosis, but that’s the body and life I was born into. 

And so, when some well-meaning able-bodied person says “sitting is the new smoking”, I am angry. For the people who need a chair once in a while, for the people that need a chair all the time, and for everyone in-between. I am angry for myself and for the little girl whose feet hurt every day that no one listened to. I am angry because it’s time to make this world recognize that good and evil, right and wrong are not dictated by the way someone looks or the way we can function in a society not built for us. We’re in this together. Meet us where we are, and pull up a chair.