For the last year, I’ve followed the same routine every night before I go to sleep: I get out my phone, scroll through my photos, and post a selfie on social media.
I suppose it’s become something of a ritual — one that has brought me comfort and happiness, not to mention taught me plenty of lessons.
But I didn’t start this journey from a place of comfort and happiness. In fact, I started posting selfies for a very different reason altogether: to defy online trolls.
It started in August 2019, when I wrote an anti-Trump op-ed for CNN. Shortly after, a conservative YouTuber mentioned me in a video and posted my photo. Hundreds of comments under the video proceeded to make fun of my appearance. As a woman writer with a genetic bone and muscular disorder, who is also very active on the internet, I’m used to being called names like ‘blobfish’ and ‘whale,’ but there was one comment I just couldn’t shake. Someone said that I should be banned from posting photos of myself because I’m too ugly.
The more I thought about it, the more I knew I wanted to respond in some way. Not directly to the person, but as a general statement.
That’s how this tweet was born. It was a defiant move, meant to show trolls that they’re not going to get the best of me, and it quickly went viral. When I posted my tweet, I had about 7,500 Twitter followers. But soon, my followers grew to 10K, then 25K, then 50K, and then 100K. People began retweeting and commenting, which helped the tweet gain media attention; I did interviews with PEOPLE, USA Today, Good Morning America, and the BBC.
For each of the next 366 days (2020 was a Leap Year), I posted a selfie and tracked them with the hashtag #MyBestSelfie. Some selfies were serious, like the ones where I talked about disabilities or how I was feeling on not-so-good days. Some were fun and silly, like the ones that showed off my love for The West Wing and photo filters. But there was one thing they all had in common: Each selfie truly reflected my personality and who I was. Each was a celebration, and each carried a message.
Truth be told, I never expected to keep posting selfies for a full year, but as the months rolled by, I began to notice something: I was getting to know myself in ways I never had. With each selfie, I felt more comfortable in my own body and discovered a freedom I’d never really felt before as a disabled woman. I grew up feeling different (and looking different) from people my age, which definitely had an impact on my self-esteem and self-image. With each click of my iPhone, I felt like I was able to have a conversation with my younger self, telling her all the things I wish I had known back when I was a teenager.
I often worried, though, about how people would react to all these selfies. After all, I’d seen first-hand how critics reacted to just ONE of my photos. What would people think about photos every day? Would that be too much? I didn’t post my selfies to be vain — that was never my goal. I posted selfies to unapologetically take up space and demand to be seen as a disabled woman.
So much of our culture is shaped and dictated by beauty standards — what is considered beautiful, who is considered beautiful, even the fact that beauty is valued in the first place. Beauty is an asset, whether we like it or not, and there is social currency afforded to those who fit into the “beautiful” category that’s been created by strict Western standards. Acceptance. Success. Even love. In my eyes, it all seems so much easier for the “pretty people.”
Our society makes it clear that disabilities are not considered beautiful or valuable. Ableism tells us that disabilities are actually shameful and looked down upon by a large majority. Isn’t that why trolls mocked my appearance to begin with? Disabled people fall outside the lines of beauty standards and, of course, it doesn’t help that disability representation is sorely lacking in everything from pop culture to politics. We see very few disabled people in movies and TV shows or in leadership positions. In fact, the Trump administration has spent the last four years actively mocking and stripping the disability community of its rights, from the time he made fun of a disabled reporter to his administration’s proposed changes to the Social Security Disability Insurance program.
This is the ableist landscape we’re living in, so maybe it’s not a surprise that one of my biggest fears was how people would react.
Then again, perhaps that’s exactly why I kept posting selfies. I may have started this year of selfies for myself, but I soon realized that these selfies weren’t just about me. Other disabled people told me they identified with my words, too, and they began posting selfies of their own. They started sharing their stories and showing the world who they are. I’ve often felt very alone as a disabled person and for the first time, I was seeing the disability community taking our rightful place at society’s table. Finally, I was seeing people like me — people who weren’t ashamed of who they are — and it was one of the most glorious things I’ve ever experienced.
With each selfie, I felt more comfortable in my own body and discovered a freedom I’d never really felt before as a disabled woman.
We don’t typically think of selfies as being a revolutionary act or even political, but they are, especially in 2020. It’s a way of taking back my power and painting a more accurate picture of disability. Because the one we have now? It’s more 1950 than 2020 — full of misconceptions that often only show disabled people as drains on society. On the contrary, we lead full lives and I’m so proud that I was able to show that for an entire year.
I’m not naive to the toll of being so visible on social media. I often have days where I feel the sheer weight of all those taunts and cruel words and it all becomes too much. It happened just this month after people started using my photo for the New Teacher Prank on TikTok.
After experiences like that, I have fleeting thoughts of how tempting it would be to “power down” and stay away from social media altogether. Who could blame me, right?
Still, I want people to see me for a very practical reason: Society is never going to change its ableist views unless we normalize disabilities. And for that to happen, people actually need to see disabled people, who represent almost 25% of the U.S. population and yet continue to be hidden from view. The more we see people with disabilities, the more we can learn from their experiences and foster dialogues that are necessary for real, measurable change.
My hope is that these much-needed discussions will continue. While I wish conversations around things like disability and sexuality or disability and work would have happened sooner, they ARE happening. And that’s the whole point.
Sometimes I wonder if I should stop posting so many selfies. But then I’m reminded of our reality in 2020: Disabled people have to fight to be seen and heard. These selfies are for every single disabled person who continues to fight every single day. Too often, we think that we have to take huge, grand steps to effect change, but my selfies showed me just the opposite. We can do little things, like sharing our experiences through photos, and still have a huge impact on the world around us. My selfies are my story.