Advise you to be careful about this portrayal of disability.
Would not necessarily pass sensitivity checks.
Could fall into the disability = scary discourse.
As I stared at the comments on my rough draft, my heart beat faster with each phrase I read. My breath came in short bursts, my hands felt shaky, and tears blurred my vision. I felt terrible. I was terrible. I was an awful, ignorant, uninformed, sorry excuse of a human being—not even fit to write about my daughter, let alone care for her. Or at least that’s how I felt until I managed to calm down a few minutes later.
It was week two of a six-week online writing course focused on narrative structure and I was looking at feedback on my assignment—an outline for a possible memoir about life with my youngest daughter, JJ, and her rare genetic syndrome. So far, my teacher—a young British woman with expertise in the course topic—had appeared knowledgeable, passionate, and encouraging. What I hadn’t realized was that she also had a side gig as a disability sensitivity reader for several traditional publishing companies.
The problematic scene my teacher had flagged talked about how my thoughts and feelings about JJ’s body have changed over time. JJ has Rett Syndrome, a rare progressive disorder that has already taken away her hand use, ability to walk on her own, and verbal ability. By the age of six it has left her with a wheelchair, epilepsy, and a feeding tube. If her disease follows its natural progression, she still has much more left to lose.
When she was three and we received JJ’s diagnosis, I was terrified of what it would do to her. In the International Rett Syndrome Foundation handbook I received in the mail, I had been shocked to see dozens of photos of girls with severe scoliosis, hands that didn’t work, and necks no longer strong enough to hold up their heads. Terrified is the word I used to describe what I had felt at the time and was the term my teacher objected to. But I couldn’t find a good alternative. It seemed to me that no parent, when confronted with the news that their active, mobile child has a progressive disease that could easily rob them of their hands, steps, spine strength, and head control is likely to feel very differently.
But the point I wanted to make in that scene was that I no longer feel this way. Over time, my emotions and responses have changed. I now find so many of the boys, girls, men, and women with my daughter’s syndrome to be beautiful not despite their bodies, but because of them. Their limbs, hands, spines, and necks are a testament to their perseverance and to the powerful and difficult battles they fight every day in therapy rooms, at doctor’s offices, and on hospital beds. But I didn’t get to this state of mind overnight. Instead, it took lots of time and a journey through a long and torturous grieving process.
In today’s post I use this writing experience, not as a way to complain about my teacher (who was a genuinely nice person), but in order to illustrate some troubling trends I have noticed in the world of disabilities, as well as in the world at large.
First and foremost, it showed me how difficult it can now be to find common ground or to carve out a space for nuance. I am afraid that many of us are losing the ability to respect others’ individual experiences, backgrounds, and worldviews. A one-size-fits-all approach is not going to honor any of this complexity. It doesn’t work for friendships, marriages, medical practices, parenting, education, or writing—to name just a few. When my teacher described the type of portrayal I had to avoid—namely the portrayal of disabilities as frightening—it upset me. I was trying to convey a complex array of emotions that had shifted and changed over time. Did some of those emotions fall into the dreaded stereotype? Yes, they did. But that was hardly the final point I was trying to make.
I have written before about the dominant narrative about disabilities. More and more often, writers are told that there is a certain way we must portray people with disabilities. There are now writing workshops that provide lists of the correct and incorrect ways to do this. There are rules to follow. Words to avoid. Pitfalls to circumnavigate. Stereotypes to eschew. However, these lists and guidelines tend to ignore the fact that the world of disabilities is vast and encompasses more people and diagnoses than we could ever hope to describe.
My teacher, for example, was very different from JJ. This woman was in her twenties and her writings about disability centered on adolescent traumas and mental health issues. It’s hard to see what these two populations might have in common, and that’s before we add a middle-aged special needs mother into the mix. In fact, it sometimes feels like the only thing the disability sensitivity readers, educators, and workshop facilitators have in common is that 1) they are adults with some sort of disability and 2) they are verbal.
And this leads me to another issue, which is that this very vocal part of the population almost always advocates for portrayals of disability that only focus on empowerment. I love that some people feel empowered by their disabilities and differences and do not wish to change anything about themselves. But, unfortunately, not all disabilities add to the world’s beauty. Rett Syndrome certainly doesn’t. Instead, JJ’s syndrome inflicts intense pain and mental anguish, dramatically limits quality of life, and shaves decades off lifespans. Put quite simply, it is not a disease most people want to exist, let alone feel empowered by.
In an episode of her award-winning podcast, The Rare Life, medical mom Madeline Cheney talks about two very different categories of disabilities. One category (she calls it Category A) consists of what the disability gatekeepers tend to focus on. These are disabilities that require accessibility from the outside world, should not be viewed as inherently “sad,” and need to be accepted without judgment by others. Category B, on the other hand, encompasses diseases like JJ’s syndrome. These are types of disabilities Cheney calls “pain giving” and can often severely limit lifespan. Cheney points out how it is normal for parents and caregivers to grieve these kinds of diagnoses. I would add it’s also quite natural to fear them, especially at the beginning of a diagnosis journey.
My biggest worry is what happens when the set of rules governing disability portrayal is pushed beyond the bounds of common sense. Taken to an extreme, the portrayal of disability as empowering leads to a mentality that no one with disabilities needs to be “fixed” or changed. This ends up pitting some of us and our loved ones directly against science itself—in the form of research, medical advancements, and even the search for a cure. My own family is living proof of just how much these things can help. I have watched JJ’s quality of life increase greatly, thanks to a new treatment for her syndrome, and feel grateful every day for the gene therapies now in clinical trials. Without these things, my grief at her constant suffering and truncated future would know no bounds.
I fear that the world represented by disability sensitivity readers is on a collision course with the world of science, gene therapies, FDA-approved drugs, life-enhancing therapies, and cutting-edge medications. Because of this, it is imperative for all of us to consider the important questions as soon as possible. Here are just a few I have begun to ask myself: What do I truly believe about all forms of disabilities and how they should be portrayed? Are there ways in which we can increase accessibility, awareness, and respect for disabled people while also honoring everyone’s personal experiences and complex spectrum of emotions? Must every disability be empowering? Can we celebrate diversity and scientific advancement?
It is my personal hope that we will eventually find some common ground between the two sides that came into conflict the day I turned in my draft to my writing teacher. But the experience taught me that, when push comes to shove, I have to do what feels right for me and my family. I always want to back people and institutions that value honesty and complexity, respect everyone’s individual journeys, and provide us with ways to alleviate unnecessary suffering in the world. If this means I end up having to ignore certain kinds of feedback or writing guidelines, then so be it. It might be the only way I can tell my family’s story with the sincerity and transparency it deserves.
What are your thoughts about portrayals of people with disabilities? Have you ever found yourself on one or the other “sides?" Let me know in the comments below.