Tag Archives: intersectionality

Doing Harm Could Do More Good


Debbie says:

Maya Dusenbery’s Doing Harm was in a position to be a really important book. Dusenbery’s deep research into sexism in medicine stems from her own experience being (fairly smoothly and quickly) diagnosed with an autoimmune disorder, and then learning just how lucky she was, compared to other women in her situation.

I was excited about this book, and glad to see that Huffington Post published a fairly long essay by Dusenbery summarizing some of her findings. And then I was horrified to notice that the essay, which Dusenbery describes elsewhere as an excerpt, does not address the relationship between racism and sexism (including such important stories as the perils black women face in and after pregnancy, and the terrifying story of Jahi McMath). The table of contents and index of the book are available on Amazon; looking them over, I see that Dusenbery does mention racial bias: however, she devotes fewer than 10 pages of her 300+-page book to these issues. The index entry for racial bias is far shorter than, for example, the index entry for postural orthotic tachycardia syndrome. Without in any way reducing the importance of that specific syndrome, I have to worry about a book that focuses on it to a far greater extent than intersectionality in medical bias.

From what I can glean from the Huffington Post piece and my research on Amazon, Dusenbery’s research is good and her focus on autoimmune diseases in women is valuable.

 [Since 1993, when the FDA permitted women to be included in medical research studies], the research community has largely taken ― as one advocate put it to me ― an “add women and stir” approach: Both men and women are usually included in studies, but researchers often do not actually analyze study results to uncover potential differences between the two. When it comes to pre-clinical research, male lab rats are still firmly the norm.

Dusenbery also treats some of the psychological history, starting (no surprise!) with Freud, and the range of ways medicine can dismiss [mostly] women’s symptoms:

It’s not surprising that it’s women who especially find their symptoms dismissed in this way since the typical patient with psychogenic symptoms has always been a woman. In the ’80s, researchers offered a mnemonic aid for remembering the main symptoms of somatization disorder: “Somatization Disorder Besets Ladies and Vexes Physicians.” These days, studies have estimated that up to a third of patients in primary care, and up to two-thirds of those in specialty clinics, have “medically unexplained symptoms.” And about 70 percent of them are women.

This needs additional text telling us what percentage of these women are black, or Latina. Substantial research (such as this) shows that skin color’s effect on symptom dismissal is intense and shameful. Women of color don’t only face far more roadblocks than white women in being taken seriously; they also face higher instances of some serious auto-immune diseases. In particular, systemic lupus erythematosis is known to affect black women at two to three times the rate it affects white women (and this number only takes diagnosed cases into account). However, Dusenbery’s index entries on lupus do not mention racial bias.

Trans people, by the way, merit four brief index entries, which seem to reflect no in-depth analysis whatsoever.

Judging from the quality of the Huffington Post excerpt, and Dusenbery’s well-deserved reputation, the book is probably full of excellent information, well-presented, and worth knowing. But unless everything I can determine from the excerpt, the table of contents, the reviews published on the book’s cover, and the index is all misleading me, and substantial treatment of intersectional issues is somehow present despite all the indications, Doing Harm is ultimately too flawed by privilege and bias. Anyone up for writing the book we need?

Distantism and Exclusion: Thoughts from the Deaf and Deaf-Blind


Debbie says:

I was not aware of deaf-blind poet John Lee Clark until the amazing jesse-the-k posted this quotation from him.

Each form of social bigotry has its distinctive personality and its unique set of intertwining evils. So I would like to dwell on the concept of distantia, or a standing apart, which lies at the heart of distantism. We already have a Protactile* word that describes people who pull away from touch, who refuse to connect. It is an attitude and a behavior. Many hearing and sighted societies prize it highly, and their members seek to maintain physical distance, however thin those margins may be. Their rulers and heroes stand alone–the more remote they are, the more highly esteemed they are. Even when the less privileged are squeezed closer together due to poverty, exploitation, or as punishment, distantism manifests itself in the long lines, tight cells or dubicles, and above all, their being removed out of sight and hearing. For all the hype around its ability to connect the world, technology has often served to isolate people in every other way.

The first sentence is worth enshrining on city plaques and statues (after all, we’re going to need some new ones.)

For the rest, I do not 100% agree with him about technology and distance (I don’t 100% disagree either). The rest of it rings so true to me, at least in the U.S.: we are so committed to physical distance, to the remoteness of “rulers and heroes.” He doesn’t quite say that the close quarters of “poverty, exploitation [and] punishment” are part of the ways we revere distance, but he surely implies it.  Lots more of his thoughts about distantism at the link, including ever-crucial thoughts about deaf-blind as teachers of the deaf-blind. Nothing about us without us.

I hadn’t thought about The Miracle Worker in years, if not decades. Just having the title pop into my mind in 2017, when I was reading this, I could instantly see the way I would critique that work now (even though I loved it as a child). For those who don’t know it, it’s a play and film from 1963 and movie about Anne Sullivan, who taught Helen Keller. The play is based on the autobiography of Keller, but centers Sullivan. Keller was the world’s most famous deaf-blind person, and a strong political activist: in the 1950s, I didn’t know what was wrong with making the story about Anne Sullivan. But I do now.


Before I got around to blogging this, jesse-the-k added another layer by linking to Matthew Rodriguez’ “A Sign of Trouble: The HIV Crisis in the Deaf Community.” This article discusses high HIV rates among Deaf people, and tells a couple of stories, including this horrifying one:

In July 2016, [Darrin] Smith, who identifies as black, gay and deaf, presented to a doctor seeking pre-exposure prophylaxis. Despite his knowledge of PrEP, the HIV infections rates in the black queer community and his willingness to take the drug, one thing stood in his way: a hearing doctor. The doctor told Smith that Deaf people should not be having sex.

“I was upset, I was angry,” Smith told INTO. “Just because I’m deaf does not mean I’m broken. It does not mean I cannot function as a normal human being.”

Let’s be clear. There is absolutely no reason why a Deaf person should not have whatever kind of sex he/she/they want, and absolutely no reason a Deaf person should not have access to PrEP.

Those in the community realize that this complicated problem requires complicated solutions. Smith and [deaf HIV-positive man Matthew] Byrd both expressed the deaf community itself need more education about the ways that race, sexuality and HIV status intersect with their hearing status.

“It’s really hard to talk about these things. It’s hard because there’s a layer of racism, there’s a layer of homophobia,” Smith said. “There’s a level of intersectionality that has to be talked about.”

Byrd said that dealing with HIV stigma among the deaf community has meant there are few spaces where he can be himself.

“The only place I feel that there’s any kind of mutual respect is the deaf, gay, POZ community,” he said. However, Byrd said, they have no national HIV organization to foster community or educate others.

Thinking about the struggle of Deaf people to get reasonable HIV care leads back to distantism. Intersectionality, such a buzzword for the last several years, speaks to at least acknowledging, if not addressing, distantism. The HIV medical community must acknowledge the specific needs of Deaf people, and bring Deaf educators under its umbrella, just as all of us need to acknowledge the places where we use distantism to keep other people away from the resources, care, and agency they need.

Thanks, Jesse-the-K!