A few weeks ago, I had an emergency retina surgery that included the removal of cataracts and glaucoma in my right eye. The three-part surgery also involved the replacement of my retina. Since birth, I have had very limited vision in that eye. I mean, like, I could only see blobs of color. As such, I have been a loyal glasses wearer since before I could spell my own name.
Throughout my childhood, my blindness was a stumbling block for me. For example, I remember being on a roller coaster at Great America theme park in Santa Clara, California when I was five years old with my older cousins. Despite my age, I was extremely tall so they brought me on the ride with them. I was terrified but I wanted nothing more than to be accepted and included by my cousins. At the top of a large loop, my heavy, “Coke bottle” glasses flew off of my face and rattled around my feet for a while before my oldest cousin, Michon, caught them between her feet. She rode the entire roller coaster holding my glasses between her pointed toes like a pair of chopsticks holding onto a much too large, very delicate noodle. My cousins never took me on a roller coaster after that.
My low vision and clunky glasses were hallmarks of my identity and the sources of bullying and ridicule. In my teens, I accepted that I would never be able to see out of that eye like “normal” folks. However, in my early twenties, I found an incredible ophthalmology team in Southern California to fit my first pair of contacts. I remember putting contacts on for the first time (after crying and struggling to physically put them on my eyes). I was astounded at the visual clarity and how much more of the world I could see. I felt more confident.
I also remember how people reacted when they found out I was wearing contacts for the first time. “Oh my gosh, you haven’t been able to see out of your eye this whole time?” they would shriek. Close friends and family members would drop their jaws in shock when I described what I could and could not see. Even worse was when people asked to wear my glasses to see how strong the prescription was. Sometimes, they would pass my glasses around before placing them over their eyes, shocked at the weight of my large lenses.
I grew so accustomed to my poor vision being the butt of every joke that I simply stopped talking about it. By my thirties, nearly no one knew about my vision struggles. Unfortunately though, not talking about my disabilities never made them lessen or go away. Instead, my constant need to “be normal” and fit in with all of the able-bodied people around me often left me worse off. And, since my late 30s, I have found myself on surgery table after surgery table to address my consistent, chronic disabilities.
Growing up, I never considered how my race and gender shaped my experiences with disability and ableism. In many ways, I simply accepted my experience as the norm, essentially expecting people to offer jokes before they offered me any assistance. As I learned of my heart condition and neurodivergences, I grew all the more silent about what being Black and disabled meant for my life. Now, on the other side of a dozen surgeries and hospitalizations, I have a very different perspective.
Recently, I took to Threads to ask other Black disabled people about their experiences with friends and family members who seem to get tired of our disabilities and the needs that come along with them. Almost immediately, folks began chiming in about a term called “compassion fatigue.” Compassion fatigue is a term often used to describe the ways that medical professionals and other caregivers may experience exhaustion, secondary trauma, and other physical and mental challenges due to their excessive giving to others in need. It is the body’s response to vulnerability and exposure. Some refer to it as “the cost of caring.”
However, that wasn’t exactly what I was initially getting at. Over my life, I have rarely asked for help from others with my disabilities. For fear of being abandoned, further isolated, or re-traumatized, I have typically kept my struggles to myself. I have only ever had one consistent caretaker: my spouse of over twenty years.
In our more than two decades together, he has been my primary caretaker. Twenty years ago, he and my mother-in-law took care of me after my first open heart surgery in undergrad. He nursed me through the deliveries of our three children and all of the complications that came with those pregnancies. In fact, my mother-in-law was holding my right leg as I pushed my first child into this world while my spouse held the left. He sat by my bedside while I fought for my life after contracting e. coli meningitis (while pregnant with our first child). I’ve have been bedridden from multiple foot surgeries, multiple eye surgeries, and from transabdominal aortic repair type 2 (or the hardest damn surgery of my life). In all that time, he never made me feel as though my disabilities were a burden. And, I would not be alive today if not for his care and compassion aided by the consistent love of my mother-in-law.
Yet, other folks, who I would probably never ask for help, have articulated how tired they are of me “always being in the hospital.” Once, a friend declared, “i’m tired of surgery!” when I explained that I would be going under again. Time after time after time people have reminded me how tough it is for them to have to witness me undergoing medical procedures or facing a new diagnosis. Rarely, though, do they ask me if I am tired of it, too.
This is something different. While compassion fatigue might feel like the cost of caring, there is also a cost to being cared for when you are Black and disabled. When you are a Black disabled woman, folks often do not even allow themselves to care too much, lest they be harmed in the process. We suffer from what I call “compassion resentment.” The two words sound oxymoronic and that’s because they are.
Where compassion is the open availability of care and concern meant to help, heal, and restore pain, hurt, and trauma, resentment is the defensiveness toward it. In my experience, I have encountered droves of people who resent my disabilities and the care they require. They hate having to make accommodations for someone who doesn’t “really look sick.” They get irritated at the idea that they might have less of me because I am unwell. Rather than centering me, the human being who is often fighting for my very life, they center what they want from me and how hard it is for them to get it on demand.
Where I have noticed compassion resentment most acutely has been in my romantic life. While folks I have dated have often started off supportive and caring, they eventually shift to feeling put off by how my body works. One woman I dated once told me, “there is always something happening with you” in response to my ongoing need for care. I have been called “crazy” by three past partners who knew full well of my anxiety and depression diagnoses. In other instances, people simply ignored me when I explained I couldn’t participate in strenuous activities or heavy drinking. In fact, a few partners pressured me to do those things anyway because it made them happy.
Over time, I have found myself pretending to be normal just to find love. In the past, I have misrepresented my pain and disability needs for women I thought would abandon me otherwise. I have played along with the performances of normalcy to accommodate people’s lack of capacity for compassion. And, at times, I have withheld my disabilities altogether, tired of rejection and subtle ableism.
I honestly can’t enumerate all of the ways I have worked to reduce the load my disabilities place on others. I have navigated the shame of people who once cared for me learning that I am unwell, imperfect, and often in need of care. Being told “you’re a lot” or “that’s too much” over and over again has left me unsure that even other disabled folks will have time, space, and capacity to love me, all of me.
Another doctor’s appointment, diagnosis, health emergency, or shift in medication and I worry that everyone will leave me. Queerness be damned, most folks’ politics do not center nor acknowledge the complexities of being Black and disabled.
I know it may seem trite or silly but I think frequently of my cousin on that roller coaster holding my glasses between the tippy toes of her tennis shoes. I think most frequently about how my disabilities ruined her roller coaster ride. But, I almost never think about me. Five year old me. Terrified that the very device I use to see might be lost to the dips, quietly embarrassed that my unruly body disrupted another fun day, secretly reminded that I am the burden.
As usual, I have no answers here. I am still in the throes of health emergencies and new diagnoses. I may never get out of this cycle of disability and (un)wellness. But, I have learned to develop compassion for myself in the process. I have come to see my own experiences with my body as the ones that truly count. And, rather than taking my vulnerabilities and needs to resentful people, I have made a concerted effort to curate a community of folks who get it, who get me. And, I believe them when they tell me that I am never too much for the people who deserve me in their lives.
In this moment, that is the best I can do for who I am today and for who I was on that roller coaster all those years ago.
Comments
Nothing yet. Say the first thing.
Sign in to join the conversation.