I’ve Always Felt Pride in My Visible Disability. My “Invisible” One Is a Different Story.
July marks Disability Pride Month, a time to commemorate the passage of the Americans With Disabilities Act and to celebrate the diversity, resilience, and visibility of the disabled community. This Disability Pride Month, we asked writers to share aspects of their identities and lives that they feel might be “invisible” to others. Check out our latest coverage here.
When you meet me for the first time, the white cylindrical device around my neck is almost immediately apparent. I’ve had bilateral vocal cord paralysis since birth, so I wear a tracheostomy tube that helps me breathe.
Even if you don’t see the trach tube, you might be able to hear it. A boy in my high school used to say that I sounded like Darth Vader. I leaned into the joke only because I didn’t know how else to respond. I’ve navigated school, friendships, work, and romance with my trach tube. For my entire life, this very visible disability has been integrated into my everyday experiences – for better and for worse – and it has always been an essential part of me. It is part of my joy, my confidence, my identity.
But underneath all of that pride, I also have an invisible disability that comes with a lot more fear and uncertainty. Here’s what most people don’t know: for 30 years, I’ve used a feeding tube, known as a G-tube, to help with my severe gastrointestinal reflux, or GERD. I take lifesaving medication through this second tube, but I also rely on it for nutrition during flare-ups. During childhood, food would often get stuck in my esophagus if I didn’t chew slowly enough, if I didn’t drink enough water while eating, or if I took a bite that just happened to be too big. I wouldn’t be able to eat full meals for days on end, sometimes even weeks. And when I couldn’t eat, my whole family lost their appetite and stayed worried until eventually, finally, the food slid down and I could eat again. Those memories will stick with me forever.
“Many of us have to straddle a fine line to avoid appearing either ‘too disabled’ and ‘not disabled enough.'”
My journey with accepting this disability has been a little more complicated than it has been with my trach tube. In school, I used to hide food in my desk and take bites when the teacher wasn’t looking because I was never able to finish it during lunch; class rules prohibited us from eating in class, and I didn’t want to ask for yet another accommodation that would make me look like I was asking for “special favors,” an all-too-common stigma for kids with disabilities. I was chronically underweight, and a boy in college once asked glibly if I had an eating disorder. Although I denied it, I was too embarrassed to explain the truth.
At my first job, colleagues told me I was lucky to be so skinny and still “eat whatever I wanted” – they didn’t know that my doctors had recommended a diet of only soft, wet, alkaline foods. Aside from my G-tube, I also have scars all over my stomach from childhood surgeries, which is why I only wear one-piece swimsuits to the beach. Because people don’t see my scars and my G-tube unless I lift my shirt up, it’s easier to laugh off the comments about my eating habits or change the subject altogether.
I often feel like a living contradiction. Here I am, unapologetically taking up space with my trach tube in every room that I walk into, while simultaneously trying to hide another disability because – let’s face it – it’s just easier than having to face an additional barrage of probing questions. How do you explain something as clinical-sounding as acid reflux? At least the Darth Vader comparisons made me sound cool.
“Being multiply disabled is often complicated and confusing.”
At the start of this year, I had one of the worst GERD flare-ups of my life. I was forced to eat nothing but plain porridge, pork floss, and Ritz crackers for more than two months. I lost almost 10 pounds. During a flare-up, friends might not understand why I can eat a burger one day and not the next. Enjoying delicious food is one of the purest joys to me, so not being able to eat is more than just a form of physical suffering – it’s an emotional one. My mental health becomes stuck in a downward spiral, which is exacerbated by doctor’s appointments, health insurance snafus, issues with getting medication refills, and the looming fear that long-term reflux can lead to more significant health issues over time.
Being multiply disabled is often complicated and confusing – everything I’ve gone through with my tracheostomy makes me proud to be disabled, while my reflux and G-tube are often a source of anxiety, dread, and even body shame. I don’t have it all figured out. It’s particularly a struggle for me as a journalist who often speaks publicly about disability representation in the media and who trains other newsrooms on how to cover disability issues with respect, sensitivity, and empathy. The reality is that I am still learning how to live with confidence as someone with multiple disabilities.
One of the bittersweet things about the disability community is that I know I’m not alone. Many of us have to straddle a fine line to avoid appearing either “too disabled” and “not disabled enough.” People with invisible disabilities often struggle with not being believed, while those whose disabilities are visible and apparent are often reduced to the assumptions that others make when they meet for the first time. I’ve known what it’s like to be both for a long time, and both experiences are valid.
Now, I know that the parts of me that may seem like contradictions are really just nuances – they are what make me human. I can feel happy and secure in who I am one day and have other days when I can’t eat and health anxiety overtakes my body and everything just – for lack of a better word – sucks.
This is all a part of what it means to be disabled. No matter how apparent my disabilities may seem to other people, what matters most is how I feel about them in the end. And that alone is enough.