Having lived with Spina Bifida Lipomyelomeningocele for the last 27 years, I spent a lot of time at home. While recovering from the many childhood spinal surgeries that allowed my spine to grow and untether and helped me develop like other kids, I mostly spent time with my Wela (Grandmother) and my father, playing dominoes and daydreaming about seeing my friends at school. I can still remember how anxious I felt, wondering if they’d even remember me after months of absence due to my disability. Whenever my sisters came home from school, I listened attentively as they shared what they did in class or talked about the relationships they were building, attempting to live vicariously through their experiences. I couldn’t wait for it to be my turn.
Despite often feeling isolated and left out during that time, I began to learn how to adapt to a world that was intended for those who are abled, those who don’t have physical or even invisible disabilities. I made it my goal to become as self-sufficient as I could. By the time I moved out to Los Angeles in 2016, I found a doctor to treat me as I aged with my Spina Bifida; I also decided to pursue my goal of becoming an actor. Both journeys, as it turned out, would be essential to becoming a fully independent Disabled adult.
When I lived at home in Florida, there weren’t many options for me to get around on my own since public transit was almost non-existent. In Los Angeles, there were buses and trains that could take me anywhere—not to mention the metro system, which offers reduced-rate cards for individuals like me with disabilities. I was able to manage everyday tasks with ease—an ease which most people take for granted. As I adapted to my new surroundings, I became more and more comfortable doing things like grocery shopping without an aid, riding the metro to get around Los Angeles (since my disability doesn’t allow me to drive), going to acting auditions on my own, and taking myself to doctors’ appointments.
After finding my groove when it came to navigating my disability, I felt comfortable enough to express another identity, one that isn’t as obvious as my disability—that of my sexuality. Last year I came out as Bisexual, which allowed me to connect with the LGBTQIA+ community on a more personal level. I began to attend LGBTQIA+ mixers where I had the chance to meet people, like me, who were navigating the Hollywood industry. I also began to frequent LGBTQIA+ coffee shops, where I could get my work done in a safe environment or even spark up a cute little coffee shop romance.
As I became more mobile, I met all sorts of people in both the Disabled community and the LGBTQIA+ community. I formed bonds and created a chosen family where I felt seen, safe and supported when I needed it—that was until the pandemic changed everything. With the onset of the pandemic in March, the freedom I worked so hard to achieve quickly began to vanish. Suddenly I could only go out when necessary—no more popping in to the stores down my block to grab ingredients for dinner, or working from a cafe to break up the mundanity of my usual work-from-home routine. One of the things I especially took pride in was my tendency to take excellent care of my health and get myself to my doctors’ appointments easily via the public metro. With new health risks abound, I could no longer take care of myself as I’d hoped, and losing that autonomy felt like a slap in the face.
I—and others who are Disabled like me— have dealt with new blows to our hard-earned self-sufficiency in the last six months. During the first few days of the lockdown, I increased the usual safety precautions that my disability already required of me through use of hand sanitizer and PPE. Still, I remained anxious by the thought that I wouldn’t have contact with anyone for an undetermined amount of time. I live alone, with no family or friends. At nearly thirty-years-old, it’s been a while since I felt this sting of helplessness. Early on, there were moments when I needed to rely on friends to grab my medical supplies or drive me to doctors’ appointments, which were still a necessity, even amid a pandemic. Even though my designated friend and I followed health protocols, there was always the fear of one of us getting sick. As a result, I began neglecting my health to not feel like a burden to my friend. I would purposefully not take my pain medications as frequently, preserving them as long as possible to no longer feel guilty implicating my friends in my own personal health crisis.
By the time Pride was canceled in June, I couldn’t help feeling incredibly sad. This would have been my first Pride month being out as Bisexual. Sure, I “attended” the online events that New York Pride held on Facebook, but the pandemic took away the in person experience of Pride, preventing other potential first-time Pride goers and me from creating memories of which many of us had only dreamed. I felt like I was mourning so many could-have-beens for myself and my peers. I still found ways to celebrate with my chosen LGBTQIA+ and Disabled families by holding Zoom movie nights where we would watch movies or shows with our favorite representations of LGBTQIA+ culture—my personal favorite being The Legend of Korra.
LGBTQIA+ Disabled people are great at adapting to any situation. When something is cut off from us or out of our reach—in this case, we were cut off from seeing each other in person (many of us had hoped Pride would be a vehicle through which we’d meet in person for the first time)—we figure out a way. Our Zoom movie nights, for instance, still created an occasion to celebrate each other, even if they left me wishing I could thank my community—physically, in person—for all they’ve done to support me.
The pandemic has created new challenges—at times, even exposing old, previously overcome obstacles— for myself and many others in my communities. It’s taken a toll as well on many Disabled people’s mental health, as many of us confront regular instances of ableism—the social prejudice against Disabled people that often takes the form of violence—in our communities or in the news. The act of not wearing a mask, for example, is a form of violence against those who are vulnerable. By not wearing a mask, an abled person could get a Disabled person sick, which, depending on the disability, could result in a more labored or indeterminable recovery. Many people that are abled believe that this pandemic only affects the elderly and forget that there are young, LGBTQIA+ Disabled adults whose identities affect them in an intersectional way— exposing both a vulnerability that often goes unseen or unacknowledged.
As we enter the seventh month of the pandemic, I’m not sure if I’m ever going to see myself and my communities thrive again. I’m not sure if I’ll ever feel the independence I once had or if I’ll ever get it back. It gets difficult to keep on hoping that I’ll be able to physically see people, hug someone again, or feel the physical sense of community I’ve worked so hard to build. I try everyday to find little moments of excitement and peace. I rewatch anime shows from my childhood or FaceTime a friend. I found that if I stay up really late at night, when everyone in my apartment building is sleeping, I can go up on the communal building balcony and sit with my folding chair outside and enjoy the cool nighttime air. It’s there that I pray people take this pandemic more seriously, as so many communities, not just mine, are going to be greatly affected by the actions of others.
I pray that people wear masks, go outside only when necessary, and be more considerate of our communities. These actions may seem small, but they’re a way of showing young LGBTQIA+ Disabled people that you value their lives, that you are taking steps that will one day allow members of my communities to venture out into the world and integrate ourselves into society again. Do something little Andrea wished people did for her when she was home alone playing dominos, missing her friends, missing the world. Show LGBTQIA+ Disabled adults who have lost trust in abled people that we can start trusting again, give us hope in a future in which everyone looks after each other. When we decide to support each other, we might actually have a chance to get through this.
Lead image was captured via FaceTime by: Alondra Buccio