March is Women’s History Month. Personally, I think women’s history, black
history, disability history and all of the other marginalized groups’ histories were taught as a part of our general history, but I’ll take what I can get.
Ordinarily, I don’t do much for these months, outside of Dyslexia Awareness in October, but I had just finished reading a book about a remarkable black woman’s inadvertent contribution to science and the struggles her family faced this past weekend. There were a number of current day parallels that relate directly to what this blog is about, so it seemed like a timely reason to contribute.
Her name was Henrietta Lacks, and she had cells from the cancer that killed her taken without her knowledge during the early 1950s. Those cells were unique in that they continued to grow in labs when others wouldn’t. They’re called HeLa cells, and they’re still used today.
|Pigmented HeLa cells.
By National Institutes of Health (NIH)
(National Institutes of Health (NIH))
[Public domain], via Wikimedia Commons
The book is The Immortal Life of Henrietta Lacks, by Rebecca Skroot, and I highly recommend it, especially if you’d like to learn more about the darker side of medical history, medical ethics and racism in America.
As I read, I thought of that entry I’d just written about Carol Greider last week, and wondered if she’d used these cells in her research. Toward the end of the book, my suspicions were confirmed when the author mentioned their role in the discovery of telomerase and telomeres. I thought that was a pretty interesting parallel.
In many ways, Carol and Henrietta are intimately connected. Even if Carol didn’t know from whom the cells she spent months studying, she was still getting to know a tiny part of another woman who faced challenges of racism and sexism who had died decades before. Both women continue to contribute to ongoing advances in disease treatment and understanding the aging process.
There was also a connection to Deepli’s story, in the form of Henrietta’s eldest daughter, Elsie. She was a beautiful little girl, and apparently very sweet natured child.
However, she was born with some sort of disability, in addition to epilepsy. The doctors diagnosed her with idiocy, now called intellectual disability, and suggested she be hospitalized. Between the lack of information and the horrid condition of medical care available to black families back then, she could have simply been deaf, autistic, or a range of other things. No one will ever really know for sure. She was sent to Crownsville State Hospital, where she was forced to stay in terrible conditions until her death. That was the common treatment for many invisible disabilities, back then.
Henrietta did visit her daughter whenever she could, but when her cancer finally claimed her, Elsie stopped getting visitors altogether. The rest of the family didn’t know what happened to her, except maybe her dad. People who were institutionalized in those days seldom received visitors, and it was common for them to be discarded by their families.
Back then, patients deemed ‘mentally ill’ were subjected to horrific medical experiments. The book mentioned one experiment on epileptics used to get clearer x-rays of the brain, in which liquid around the brain was drained and replaced by regular air or helium. Unsurprisingly, it caused often brain damage and paralysis. The body naturally replaced the cerebro-spinal fluid over three months, but patients still suffered dizziness, vomiting, seizures and terrible headaches during that time.
She passed away four years after her mom, and I can’t imagine the suffering that child endured. The emotional agony would have been crippling alone, but to have the physical suffering on top of it was inhumane.
Elsie Lacks was the unfortunate victim of a brutal medical system. Although she wasn’t well known, she was still an important part of our collective story.
As barbaric as those procedures were, and as unethically as they were carried out, they were still the beginnings of the neuroscience that is still helping us understand how our brains work. Through significantly less invasive techniques, like fMRI imaging, we’re now learning more about how dyslexic, autistic and other neurodiverse brains function differently from their neurotypical counterparts. That knowledge can potentially provide the roots for more effective techniques to maximize the advantages our wiring gives us, while minimizing the difficulties.
|I couldn’t find what they were scanning for, but this high resolution fMRI scan of the human brain is an example of how we now explore how different parts of the brain are used in various tasks.
It’s a hard history to study, and the connections I keep finding in present day beliefs and events are disturbing. For instance, the belief that vaccines cause cancer have roots in the fact that when vaccines were first being developed, scientists injected HeLa into unknowing patients to see if it would give them cancer. The cells continued growing, but most peoples’ immune systems could fight them off. Patients who already had some type of cancer weren’t quite as lucky, and it actually metastasised in at least one of them.
That’s no longer an issue, since techniques have changed since then, but social memory is long and often flawed.
Other parallels include the ongoing inequities women still face, involuntary institutionalism and unethical medical practices.
This is important information, though. These women’s stories must still be told, and we must respectfully learn from their stories. Furthermore, their triumphs and contributions should be celebrated. Each and every one of them connect with each of us, whether we know it or not.
(The book link is to an affiliate site.)