When I became a columnist for Teen Vogue, I came up with the tagline, “On being disabled in a nondisabled world." This was an opportunity to offer thought-provoking commentary from a unique perspective. This year my first column was about the latest surge in COVID cases, and that I've decided not to vote for Joe Biden in the 2024 presidential election because of his administration’s abandonment of high-risk people.
On Twitter, now X, I received a tremendous amount of abuse, harassment, and vitriol from fellow disabled people and Democrats. People called me a narcissist, a disgrace, a monster. I received a direct message from an acquaintance who asked what was the final straw that led to my decision. It was the administration’s current policy regarding the pandemic, I told her, and what is happening to people in Palestine. This person expressed her disappointment, then continued to ask me questions. When I emphasized that this is my story, that I’m not telling others how to vote, she responded that my article wasn’t “a diary entry,” and that it could motivate others to follow my lead.
Many others found what I wrote to be a threat to democracy, as if I did not know how high the stakes are this fall. I’m not sure of the intent behind these exchanges. Am I expected to apologize, issue a retraction? Do people not understand the role of a columnist? Having a platform is a responsibility, but it’s not an obligation to present the party line or what people want to hear. I have a responsibility to be honest with myself and not condescend to the audience. When I wrote about my fear that the recent COVID surge would be the one when I became infected, little did I know how prescient that was.
The following week, I had one of the most harrowing health care experiences of my life — and I have had more than my fair share in the last three years. Because I am unable to eat and drink by mouth, I have a g-j tube, which provides food, hydration, and medication. When I have a clogged tube, I usually get it replaced via an outpatient procedure at an interventional radiology clinic. This time, though, the pain was so intolerable that I had to go to the University of California San Francisco Health’s (UCSFH) emergency room to get the tube replaced.
Every hospital is a place filled with pathogens; ingoing patients will be exposed to some degree. But from the moment I arrived, I felt unsafe. The waiting room was full of coughing people who were mostly unmasked, and many health care workers were also unmasked or wearing typical surgical masks instead of N95s.
I felt a sense of foreboding and prayed my tube would be replaced as soon as possible so I could go home. Instead, I dealt with a terrifying ordeal. One of the techs who prepared me for the long, complicated procedure had a persistent cough and simply wore a surgical mask, not an N95. Because I can’t speak, I couldn’t communicate my pain to the nurses. My eyes were swollen after I had cried nonstop for over two hours. That I couldn’t audibly sob or scream at the top of my lungs for help only compounded my trauma.
When it was over, my friend Abby helped me speak with the ICU care team, and I told them that I intended to file a complaint about my experience. I was told the UCSFH masking policy is optional and that staff only have to wear a surgical mask, not an N95. I believe this policy endangers all visitors and patients, whether they are high-risk or not.
So I channeled my very real disabled rage into action. I started drafting my complaint against the hospital and sharing resources about how to organize for a N95 mask mandate at UCSFH.* I tweeted to document what was happening so I could remember the details while I was under such distress.
I asked my friend Sandy, a fellow disabled organizer, to tweet a message asking everyone to respect my boundaries. Instead, as she told me a few days later, my phone “was bombarded by people who were offering to call medical providers, hospitals, and patient care lines. On Twitter I saw that folks had tweeted the hospital’s patient care line and the number for the ICU.” She continued, "There was also a hashtag with your name going around #UCSFMaskForAlice. Folks I had never spoken to messaged me asking for an update on your health status, and still others offering to plead to medical care providers on your behalf.”
While some of those people likely had good intentions, I was still astounded by the audacity of people to speak on my behalf without my consent. Some of the egregious actions taken by total strangers reeked of saviorism, and others violated my privacy.
To my surprise, some of the people who had excoriated me online about my last column were the same ones wishing me a safe recovery. Most people mean well when they hear a friend is sick, but this is the problem with parasocial relationships: The majority of the people who follow me online are not my friends.
Social media is a tool that enables me to share my work, organize for change, learn from others, and hype up disabled people, which gives me such pleasure. Since I lost my ability to speak, being on social media has become an even more important mode of communication. I usually shrug off trolls, reply guys, and people who try to tone police me, but I have been left raw from these last few weeks of processing what happened to me in the hospital and online.
As disabled journalist s.e. smith wrote, “The sheer amount and intensity of parasocial interactions are changing the way people engage with social media — fewer personal stories and images, more impersonality; less engagement with commenters, more muting and blocking; further retreat into locked spaces for conversation.… The result may be a less rich and vibrant social media, with members of marginalized groups in particular much more quiet than they used to be.”
When I think of the events of the last few years, I’m struck by waves of cumulative exhaustion that take a very real toll on my well-being. Sandy texted me, “Rest today, rage tomorrow,” but it’s been hard to rest. Chronic pain and frustration make it hard for me to sleep through the night. Yet I also have a burning desire to celebrate myself, create, and feel and give pleasure. This gives me hope.
I’m not sure what’s in store for me, but I will fill my time with things I want to do: Daily photo shoots of my cats, Bert and Ernie, cooking delicious meals for family and friends, working on projects that bring me joy, including my first documentary, and dreaming and scheming for a better tomorrow. What I do know: I don’t owe anyone an answer or explanation about anything. Life is too damn short.
In a February 29 response to Alice’s complaint, the director of patient relations wrote that the hospital was “still in the process of reviewing” her concerns and said that she would receive a written response within 30 days.
Stay up-to-date with the politics team. Sign up for the Teen Vogue Take
