Conflicting Needs in a Diagnosis Cluster

When the fringes swap the center, whither solidarity?

Photo by Travis Leery on Unsplash

I enjoyed reading Suzanne O’Sullivan’s The Age of Diagnosis and last Friday, I wrote a little about the book for Fairer Disputations. O’Sullivan is a neurologist with serious qualms about the pressure to make diagnoses ever more inclusive.

Here’s how I’d summarize the cycle she describes:

The dynamic that O’Sullivan describes tends to follow a pattern. Doctors identify a pathology with severe, life-constraining consequences. They attempt to find more patients and chart what they have in common (both biologically and phenomenologically), eventually working their way to a definition of the ailment. The doctors may or may not have a biological model of why this is happening. The condition could be described by a blood test or a tissue analysis, but might be a checklist of “if you have four or more of these behaviors…” The definition acts as a rallying point for future research and gives patients and caregivers a way to connect to each other.

Sometimes fighting for inclusion in a diagnosis is urgent and lifesaving, as when activists from ACT UP worked to get women’s distinct opportunistic infections added to the definition of AIDS. While men with AIDS more often got Kaposi’s sarcoma, women got impossible-to-clear yeast infections and pelvic inflammatory disease. Male-typical AIDS set the pattern for the official diagnosis, so men could enter clinical trials of new drugs and be fast-tracked for disability, while women were excluded from care. As one ACT UP sign read, “Women Don’t Get AIDS They Just Die of It.”

Sometimes, as a diagnosis gains traction, people with milder or variant experiences of the underlying condition may feel like they have something to gain from being included. Someone may find the strategies (or the stimulants) offered to people with ADHD helpful, even if they might not have met the standard for earlier versions of the disorder. A mental health technique can be helpful for a broader range of people than it was developed for, much like a curb cut. Some people with milder or variant experiences of a disorder may push for a formal diagnosis or simply self-diagnose to place themselves under the umbrella. Another person may be glad to join a support group and chat with other people who share the same frustrations. Or as Rachel Bloom wrote, tongue in cheek, in the song “My Diagnosis” for My Crazy Ex-Girlfriend, “Doc, prescribe me my tribe, give me my throng / Tell me that this whole time I’ve belonged.”

The ACT UP example is me pushing back a little against the text. (I’m currently reading Let the Record Show, a history of ACT UP in New York City). It’s impossible to have a fully general rule about patient advocacy.

Sometimes doctors are right, sometimes they’re not. Sometimes doctors need patients’ lived experiences and advocacy to expose blind spots. Sometimes patients have a false hope about how their pain can be addressed.

What I liked best about the book is O’Sullivan’s emphasis on the conflicting needs/priorities that can emerge within what is ostensibly one movement. As O’Sullivan sees it, when diagnoses get broadened, a newly-included group of people with mild experiences may swamp the original, rarer severe experience the diagnosis was intended to describe.

For Emily May, a mom to a nonverbal autistic daughter, advocates for autistic inclusion were occluding her child when they opposed the term “severe autism” or said it was false and stigmatizing to say autistic children would “never hold a job.” The umbrella of autism was broad enough to cover people with very different needs, prognoses, and priorities. May didn’t oppose the goals that people with milder autism held, but since her daughter could not advocate for herself, she was vulnerable to being erased. What had been central to the definition was now pushed to the margins.

None of this means it’s wrong for there to be a broader definition of autism spectrum disorder/Aspergers. But it’s good to remember that the people who are the most vulnerable will have the most difficulty being heard / showing up at the solidarity meetings. It’s good to sometimes decompose our coalitions and be curious about where our needs and priorities diverge.

Over at Fairer Disputations, I make the obvious connection to youth gender medicine, where transition advocates appeal to studies based on a very narrow, heavily screened population to make the case that a much broader group of children should be allowed and encouraged to transition.

But I also think the book fits a conversation of what women lose when we’re lumped into the broader umbrella of “gender minorities.” (A deeply unintuitive term, since the coalition of women plus LGBTQ etc is obviously a majority).

To broaden the critique of broadness even further, the book reminds me of Ezra Klein’s critique of the “Omnicause”—the idea that every left-aligned organization needs to back each other up. Thus a climate justice group should also rally for abortion, and a homelessness group needs to also back unions, etc.

There’s something in here that makes sense—when you experience precarity/advocate for a particularly vulnerable group, how does that make you more attentive to other forms of vulnerability you’ve missed. But it’s as facile and false to assume all these groups share the same goals as it is to think everyone with autism has the same prioritization ranking for possible projects.

Solidarity is stronger when it doesn’t presume sameness. How can you be frank about conflicting needs without seeming like a defector? How can you rally together one week, but take different sides of e.g. the sub-minimum wage for disabled workers the next?

Where have you been part of a group with too broad an umbrella? How did different subgroups get heard (or not)?

Where have you benefited from being able to identify with a group you were on the outer edges of?