Internalized Ableism
Last month, while watching to an IGTV interview between chronic illness advocates Karolina Chorvath and Nikita Chopra, I heard the term “internalized ableism” for probably only the second or third time in my life. I knew about ableism—discrimination against people living with disabilities—since I was a young adult, but it didn’t occur to me how and why it could become internalized.
Then I was diagnosed with chronic illness. I instantly fell through the rabbit-hole and was introduced to a whole new language and experience I previously had nothing more than an academic or political awareness of. But still, after my diagnosis of trigeminal neuralgia, I had no understanding of how and why ableism can be internalized.
And I didn’t realize until recently the extent to which I have internalized ableist narratives.
Ableist narratives
The clearest definition I’ve seen of internalized ableism is from Ashley Harris Whaley, creator of the Disability Reframed account on Instagram. She writes: “Internalized Ableism refers to the phenomenon of disabled people believing prejudices about themselves that become internalized by daily living in an ableist society.”
The most egregious example of ableism in our society has to do with productivity. A person’s worthiness is positively correlated with their productivity. This is why there’s no shortage of “hustling 24/7” or “can’t-stop-won’t-stop” stories that are touted as the pinnacle of traditional—often financial—success.
But when hard work and doing your best are equated with nonstop hyper-productivity, where does that leave a person who dares to dream differently? Or a person who lives with chronic illness or disability? Or both?
Even before my diagnosis, I was deeply uncomfortable with this way of viewing work and worthiness. It’s taken me a long time to acknowledge that my discomfort was not because I lack ambition or a work ethic. It’s because there’s something unsustainable and exclusionary about buying into an exhausting definition. I rejected that that was the shape and form my life had to take.
And then, chronic illness sharpened not just society’s ableism, but my own.
The internal conflict
There are both physical and psychological symptoms of chronic illness. Since almost Day 1 of my diagnosis, I have been wrestling with the psychology of my “new normal.” In my search to understand internalized ableism—and how susceptible I am to it—I’ve come across numerous personal stories about how much internalized ableism hurts. I could cobble together context for what it looks like, so I started to find a language for my experience. But I wished for something more explicit—not definitions, but examples for how internalized ableism presents itself.
Then, at the time of writing this piece, I came across fitness coach Sophia Butler’s examples. What took my breath away was just how much of what constitutes my psychological experience with chronic illness (so far) are examples of internalized ableism. They include:
Body image issues because I compare how my body looks and functions to a more able-bodied experience.
Not advocating for needs and health because I don’t want to be seen as an inconvenience or burden.
Talking about my chronic illness when asked, in detail, when I don’t want to.
Pushing through my limitations to prove my worth.
And I know the consequences of my internalized ableism:
Body image issues have left me uncomfortable, confused, and sometimes hating how my body has changed because of physical and psychological symptoms, medical side effects, and lifestyle changes.
Not advocating for my needs or health has forced me to minimize my own pain, which in turn, amplifies my symptoms and fatigue.
Talking about my health status when it hasn’t been my choice has left me feeling insecure, anxious, angry, resentful, and alone.
Pushing through my limitations to prove my worthiness exacerbates my pain and fatigue.
The language of internalized ableism is bittersweet. On one hand, it has helped me appreciate that I’m not alone in my experience. I’m not an anomaly. The language exists because there’s many of us struggling and seeking answers. The spectrum of my difficult thoughts and feelings aren’t because I’m weak—another ableist narrative too easy to buy into. Having this language has given me insight and community.
On the other hand, the fact that such language even must exist is heartbreaking. The private struggles and the (not-so-)hidden-in-plain-sight discrimination that people living with chronic illness and disability regularly experience are what make having an “abnormal” health status ever more challenging.
Chadwick Boseman
Since the news of actor Chadwick Boseman’s death, I know myself—and many members of both the chronic illness and disabled communities—have been ruminating on what his life teaches us. Aside from the notice of his passing, I haven’t read any articles or social commentary about his experience (if any of that has been publicly shared yet).
But I do feel deeply for what he must have gone through. I wonder what it must have been like to be living with cancer while also making movies—many of them highly physically demanding roles. I wonder how he managed his symptoms, treatments, and surgeries along with his workload. I wonder how many people he worked with knew about his health status and if they made accommodations for him. I wonder if he felt he had to hide his health status and, if so, what lengths he went through to do so. I wonder if he felt like he had to overcompensate for his illness in any way. I wonder if he ever felt his worthiness was linked to his productivity, especially given his status as a public Black figure in America today.
I don’t know the answers to these questions and I don’t know if we’ll ever know. What I do know is how seemingly overnight Boseman’s example has been used to reinforce ableism. The popular one I’ve seen and heard some version of is: “If he could do all that with cancer, what’s my excuse?”
The more I see that question, the more angry I get. Let’s not canonize Boseman’s example to send the message that this is how all people living with chronic illness or disability should live. Let’s not romanticize what he went through and expect exclusionary, unsustainable ways of being when so many of us are just trying to focus on doing the best we can to take care of ourselves.
Instead, let’s use his example to act with awareness and empathy around different lived experiences. Let’s use his example to make sure people living with chronic illness or disability are seen as human beings who should be afforded the same respect, dignity, and opportunity as their able-bodied counterparts. Let’s use his example to elevate awareness about flexibility, accessibility, and making accommodations. Let’s talk about uplifting marginalized people so that they can do what they most want to do without having to choose between their health and ambition.
The big question
Several times a day, I catch myself in thrall to internalized ableism. I’m learning different ways to change those narratives that never served me. I’m learning different coping mechanisms. But chronic illness isn’t static, therefore how I feel and what I cull from my experience will never be static. It’s dynamic and challenging, which is why I’m compelled to write about it.
I’ve begun understanding ableism in a wholly new way—one which wouldn’t necessarily be accessible or relevant if I didn’t live with chronic illness—but it has lead me to a big question that I will need to take time to think through and explore before I’m ready to write about it.
Am I disabled?
In speaking with other people living with chronic illness, I know that this is a loaded question many of us eventually find our way to.
For me, it's hard to acknowledge ableism’s place in my life without also questioning disability's place. Ableist narratives have determined what disability looks like and I know that has informed how I see it. In my research for other articles I have written about the chronic illness experience, this question has come up more than I thought it would. For example, whether or not you consider applying for disability benefits (forget being eligible or accepting them) may trigger internal conflict about whether you are disabled—and how the social stigma of that definition affects your self-esteem and self-worth.
But even in thinking through internalized ableism, I find myself wondering if I can claim this language of being “disabled” for my own experience given that I don’t have obvious physical or cognitive impairments. My health conditions, like most, are invisible. Their total effect on my life, though, is anything but.
What does that make me? And where does it leave me?
This is really about you
It was hard to write this piece. It’s taken me over two weeks and countless starts-and-stops to make sense of my thoughts. This subject is too big and too important to be cavalier about. Having a language to articulate your experience, your pain, means too much.
That’s why this is always about you.
I want you to know that you are not alone. Whether you live with chronic illness, disability, or mental illness, your experience will guide you into what feels like uncharted territory. You will be subject to thoughts and feelings that, to an extent, you take for granted as part of your experience.
But don’t take them for granted. It may be “normal” to have the thoughts and feelings you’re having, but don’t normalize their effects on your psyche when it hurts too much. Take a step back—on your own or with help—and see if internalized ableism is wreaking havoc over your self-esteem, self-worth, and self-love.
I want you to know that you are worthy no matter what your health status. You determine your own worthiness. You don’t have to buy into socially-accepted definitions that don’t serve you. You know yourself best, so use that knowledge and do what’s best for you. Advocate for your needs. Learn to work with your limitations. Figure out what matters to you the most and let go of the rest.
You can still be, do, or have whatever you want—you just have to figure out it means to live on your own terms.
