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Why Does a Book About My Illness Assume I'm Not Reading It?

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The sentence struck me, a person with cystic fibrosis reading a history of cystic fibrosis. “As you and I sit here,” the author wrote, “breathing with normal lungs…”

Such a casual assumption, from a writer who acknowledges her own lack of experience with the disease. People with cystic fibrosis (CF) don’t have normal lungs, that’s true. Thanks to our body’s issues with thick mucus, our lungs too easily foster bacteria, setting off progressive cycles of infection, inflammation, and cumulative airway damage. CF destroyed my own to the extent of needing a double-lung transplant. The author describes all this with a science writer’s accuracy.

But “you and I,” with healthy lungs. “I,” the reader. By default, I’m grouped with “you,” who doesn’t have CF, not “them,” who do.

Am I, the person born without healthy lungs, assumed not to be reading this book? Do you, the author, assume I wouldn’t be interested in my own community’s history? That I wouldn’t be capable, or willing, to grapple with a 500+ page book of (popular) medical/scientific history?

Yes, the life expectancy for people with cystic fibrosis was once under 10 years old. And yes, young children do not flock to such tomes of serious non-fiction. But when the cystic fibrosis life expectancy in North America was last 10 years old, it was around 1970. Today, in the United States, it’s over 40; in Canada, more than 50. A significant majority of all people with CF today are adults. We read books. Many of us even read academic ones. I have a graduate education. I personally know a Ph.D. with CF who has a high-ranking post at a major museum, and another pursuing his Ph.D. in microbiology. Heck, one of the major scientific researchers in cystic fibrosis, Paul M. Quinton, has the illness himself!

So why, I ask again, are those of us without normal lungs excluded from this book’s explicit audience?

I don’t assume intentional marginalization from the author, which is why I have chosen not to say her name. The issue is not to undermine an individual’s good intentions, nor to leap to the defensive over an ableist slip of language, which can happen even to the most conscientious of us. Rather, this example highlights a tendency hard to escape, as a budding historian of chronic illness living with her own.

As I dug further into the book, heightened awareness deepened my disappointment. Across the chapters detailing medical treatment, scientific innovation, and fundraising efforts for cystic fibrosis, from the 1930s to the present day, I found the people with CF themselves regulated to the margins. Doctors, researchers, parents, benefactors: dozens of these figures were characterized, from personalities to life histories. People with CF? Almost all children, mentioned here and there as motivations for the more active figures, those with normal lungs. On occasion, we get a fleeting glance of other narratives — the unnamed 18-year-old with CF needing a doctor’s letter for exemption from conscription to Vietnam, the anonymous CF adult experimenting with nebulizing IV antibiotics at home, an innovation that was quickly pursued by the medical establishment. These are the characters I wanted, the histories I hoped a book about the past would tell.

Cystic fibrosis, sadly but undeniably, has killed way too many people too young, and the further in the past, the younger the toll. But even the youngest of these patients were also people, with their own perceptions, quirks, and ambitions. Even sick 10-year-olds have agency, to say nothing of those individuals with CF marrying and pursuing degrees and performing their own piano compositions even in the 1950s. To focus, as this author does, on one family’s “typical” story and to treat every other lived experience of CF in the manner of plot devices, is the kind of erasure that people with disabilities and chronic illness have had to face too often, even in our own histories.

One fact that I’ve uncovered, in my own research of historical lived experiences of CF, is that in the mid-century it was fairly common not even to tell children they had it. At the time, this was often the case across medical realms — terminal cancer, for instance, was a diagnosis shared more often with a patient’s family than the patient. Today, though, this mindset is outdated and harmful. We need more narratives of the experience of illness, past and present, shaking off the ingrained approach of viewing the patients with an outsider’s eye. We need to hear about people negotiating the complexities of lives physically impaired and/or socially disabled.

Ideally, we’ll see more histories of illness and disability spearheaded by those who’ve experienced them. But what we need, most of all, are narratives about chronic illnesses that assume people with those illnesses themselves actually are reading them.

Getty image by NikkiMeal.

Originally published: April 4, 2022
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