These Women Help Detect Breast Cancer. They’re Blind.
Research suggests blind people might have enhanced sensory abilities.
In June 2016, Lydia Simon went to a job fair in Frankfurt, Germany. She was 27 years old and had just spent five years earning her master’s degree in psychology at the University of Mannheim. It was a busy event, full of recent grads in their best professional clothes. But when Simon began to talk to employers, they apologetically turned her away.
“They told me, ‘I’m sorry, you must have a driver’s license,’ or, ‘I’m sorry, you must read our computer program,’ or, ‘you must sort through pictures,’” she tells me. “I thought: oh god, is there no job I can do?”
Simon is blind and has been since she was four years old. At the job fair, she encountered a problem that blind people deal with around the world. The European Blind Union estimates that the average unemployment rate of blind and partially sighted people of working age is over 75 percent, with more unemployed women than men. In the United States, the National Federation of the Blind reported that just 42 percent of working-age adults with significant vision loss held jobs.
Despite her credentials, Simon left that day with no prospects and little optimism for what job she might find. Then, a month later, she heard of a German organization that only hired blind women. It was called Discovering Hands, and it provided blind women jobs detecting breast cancer.
Drawing on years of research that suggests blind people might have enhanced sensory abilities, Discovering Hands was recruiting blind women to perform breast palpations, with the idea that they could potentially notice lumps better and sooner than physicians during a traditional exam.
Frank Hoffmann, a gynecologist practicing in Duisburg, Germany, came up with the concept for Discovering Hands in the early 2000s. In Germany, women aren’t offered mammograms until they’re 50. He often had patients diagnosed before then, whose cancer was missed by physical screenings.
Hoffmann felt the physical examination process was lacking. It was short, only two or three minutes, and wasn’t as standardized as it could be. Smaller tumors and lumps could be missed, he worried, leading potentially to a higher chance of metastatic cancers down the line. One morning, he says, “I had a very creative moment in the shower, when you’re not sleeping anymore, but not awake completely,” and he wondered, what if blind women could do his job better than him?
Discovering Hands was founded in 2006 and, since then, Hoffmann’s specially trained, blind “Medical Tactile Examiners” (MTEs) have examined thousands of women’s breasts throughout Germany. The MTEs go through a nine-month training program at an independent vocational training center where they learn basic science about the biology of cancer, how to interact with patients, how to conduct examinations, and their abilities to “touch” are investigated through various tests, like sorting different sized balls and palpating silicone breasts. (For now, Hoffmann says they’re only taking on female MTEs, for the comfort of the patients being examined.)
"I thought it was pretty cool that blind people could do something medical, I never thought that would be possible," Simon says. It wasn’t what she’d gone to school for, but Simon was intrigued, and applied for the training.
If you’re not blind, you may not think much about your ability to touch, lending more attention to flashy senses like sight or hearing. But Daniel Goldreich, a perceptual neuroscientist at McMaster University in Ontario, says that even among the sighted there is a wide range in tactile ability. In the lab, researchers measure this skill with a “grating orientation task.” Participants place their fingers on raised grooves, and answer questions about how many there are, or what direction they're facing. Then, they're given thinner and thinner grooves that get increasingly harder to feel.
Women generally do much better on the grating task then men, Goldreich says. Goldreich and a co-author Ryan Peters explained this discrepancy when they found that finger size strongly influences how sensitive a person is to touch. Those with smaller fingers do significantly better because the tactile receptors in the fingers, of which everyone may have the same amount, are more densely packed. A sighted person's touching abilities will also inevitably get worse with age. From your early 20s to your 80s, on average, you will decline by a factor of three, meaning you’ll need three times the size of a texture to be able to feel what it is when you’re older.
Repeated studies have found that blind people do better on these tactile exams. Goldreich says that blind touch allows for around 23 years of an advantage, so a sighted person who is 30 will “feel” the same as a blind person who is 50. (Interestingly, studies have also shown that the blind might not experience the same decrease as they get older, meaning they may always have the advantage.)
But there’s been debate over why exactly blind people do better on these touching tests. When scientists look at brain imaging, they’ve found that, compared to sighted people, the brains of blind people are doing different things while experiencing their senses.
When a sighted person touches something, they use their somatosensory cortex, the tactile area in the parietal lobe. A blind person uses the parietal lobe too, but touch also activates the occipital lobe, normally a visual area of the brain. You might expect this brain region to remain inactive because they can’t see, but instead it seems to get “taken over,” Goldreich says. It’s a striking feature, and one Goldreich and other scientists are still figuring out.
“There are many more neurons that are being activated in a sighted person than when a blind person touches something,” he says. “The question is whether the greater number of neurons causes enhanced acuity or sensitivity. Or, whether it is just some sort of side effect of blindness that might not have any functional consequence.”
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In preliminary findings from an unpublished proof-of-concept study at Essen University, Hoffmann's Medical Tactile Examiners detected nearly a third more lumps than doctors, finding tumors between 6mm and 8mm, while doctors usually found lumps between 1cm and 2cm, Hoffmann says.
In another exploratory unpublished study at the University Breast Centre of Franconia of the Erlangen University Hospital, Hoffmann followed 339 patients, 213 of whom were follow-up patients after surgery, and the other 126 were new patients who hadn’t had surgery. MTEs and physicians performed the standard palpation exam independently of each other, and then the patients were examined by a gynecologic radiologist.
In the group without prior surgery, the assessment by the MTEs again showed a greater diagnostic accuracy compared to the physicians, Hoffmann says. But in the follow-up from surgery group, the physicians did. Hoffmann thinks it’s because the doctors previously knew the patients and had more experience with post-surgical conditions.
But it’s not a competition. In practice, the MTEs don’t work alone, but alongside physicians and their patients who say they’re interested in the longer examination. When Hoffmann looked at overall values, he found that the sensitivity of the clinical examinations was between 62 and 70 percent when the doctors did it alone. With the assessment of MTEs, it was 15 to 17 percent higher, a sensitivity of up to 87 percent.
The patients said it was a positive experience as well. They were more comfortable being examined, knowing their examiner couldn’t see them, and while doctors usually spent only a few minutes on each examination, MTEs spent 30 to 45 minutes. Hoffmann says that using MTEs leads to an increase in breast checkups, with women booking return visits one or two times a year; the women enjoy the personal interaction and attention, as well as a more thorough exam.
The bigger question in the field of tactile acuity, Goldreich says, is not if the blind show these subtle enhancements, but rather: does being born blind make your brain automatically different, or is it the experience of being blind that allows you to be better at touching?
If you’re blind from an early age, you’re likely to learn Braille, depend on your other senses, and hone them more than a sighted person. Perhaps blind people perform better at these tasks simply because they’ve relied more on touch.
Goldreich says that he, in collaboration with co-author Mike Wong, are now finding that even within blind people there’s a range of ability. They found that who were born blind, who read Braille, and who do so for more hours per week, have better acuity than non-Braille readers or those who weren’t born blind. Goldreich says some blind people have better acuity on the fingers they use to read Braille compared to other fingers.
“I think those lines of evidence sort of indicate it is largely experience with touch that makes blind people better, but it may be that it’s enhanced by the fact that experience can cause activation in the occipital lobe," he says.
Without that experience, of learning Braille or relying on extra senses, would a blind person be better at these tasks? He suspects not, but because it’s nearly impossible to find a blind person who hasn’t relied on touch, or a sighted person who is extremely proficient in Braille, teasing apart the influence of brain and experience is difficult to do.
If tactile sensitivity is experienced based, then couldn’t we train sighted people to “touch” better too? Couldn’t an experienced physician be just as skilled as a blind examiner? Researchers have been trying to answer that question by blindfolding sighted people and measuring if their tactile abilities improve. Goldreich says the results are a mixed bag. While studies have shown that sighted people can show improvement on tactile tasks through training, his research hasn’t found that putting people in the dark made any difference. He did three experiments with 158 sighted participants and tested their tactile acuity after short-term visual deprivation periods ranging from under 10 to over 110 minutes. The sighted people didn’t improve, and in some cases got worse.
Marina Bedny is a cognitive neuroscientist at Johns Hopkins University who studies how longer durations of experience can affect the brain. For the past decade, she’s compared brains with different developmental experiences, like the brains of blind people. She cautions that there’s still a lot to learn about what’s going on in the brain when a blind person uses their brains' visual areas for something else. It’s not as simple as “touching” with their visual cortex, she says. Her lab has found through multiple kinds of brain imaging, that blind people recruit "visual" areas of for higher cognitive functions, like language processing or numerical reasoning.
“There are lots of interesting implications from these findings, and there’s some theories about why that might happen,” she says. “One basic thing this tells you is that the brain is a lot more flexible than what people realize. A particular brain area is a lot more like a general computer that can retool to whatever information it’s getting, rather than like a pair of scissors that was designed to cut and will only do that no matter what.”
So while everyone agrees that blind people use their visual cortexes in new and interesting ways, whether that means it’s specifically helping them with their tactile task is still unknown. “We’re trying to figure it out,” she says. “There’s not yet an agreement in the scientific community about what the visual cortex is doing in blind people.”
Like Goldreich, she suspects it’s a combination of the extra brain territory plus the experience of being blind that leads to enhanced senses. I ask Goldreich and Bedny if they thought blind women would be better at the job they’ve been given at Discovering Hands. They both said it’s hard to say for sure, because most of the published studies done on tactile acuity in the blind use the grating task. Participants put their finger on grooves, rather than actively exploring in three dimensions for something—called a haptic task.
One study that did look at haptic abilities in the blind found that blind people were better at it, but only those who had early- or late-onset blindness, not those who were born blind. The study suggested that early visual experiences, and an understanding of three dimensions, might be necessary to excel at this type of touching.
Simon and Steffi Gedenk, another MTE I spoke to, both intriguingly fit that bill. They weren’t born blind, they’re both extremely proficient in Braille, and learned it from a young age. Simon says many of the other MTEs are not congenitally blind either, and she thinks that her early visual memories help her to imagine what she’s doing while searching for lumps.
Gedenk was born with issues with her eyes, and lost her vision completely around 14 years old. “The doctors always told me it could happen, so I knew that the time would come that my vision would go away forever," she says. "But you still can’t believe it. When it’s there, it’s unbelievable, and you have to find a way to live with the disability.”
When Gedenk graduated from school in Berlin, she became a physical therapist. But after a few years, she lost her job and couldn’t find another. Like Simon, she felt that being blind was impeding her job hunt.
“I was really angry about that, why couldn’t I find a job and others could find them,” she says. “I started searching on the internet, I tried to clean offices, all these things. I always said I’d do anything. But society says that if you’re blind, you can’t do this, you can’t do that.”
Simon and Gedenk say when they first found Discovering Hands, they thought of it as an interesting option, but also a kind of last resort in the face of unemployment. But both grew to love it, for how rigorous it was, and how valued they were on the job. They felt appreciated as they were, even with no sight, which was a refreshing change from being turned away at job fairs and interviews.
“It’s a very special thing," Gedenk says. "We do it like no one else can do it, and we help can save lives. I can save lives with my job.”
Hoffmann’s initial clinical findings, while not a smoking gun that blind people are overwhelmingly better at breast exams (his studies need to be peer-reviewed first), at least show that using MTEs doesn’t diminish the diagnostic process.
And the overall goal of Discovering Hands is not to uncover the definitive neural mechanisms by which blind people may be superior, but rather to show that a trait widely considered to be a disability can be viewed in a new way. They plan to expand to more rural areas around the world, providing the women there with much-needed jobs, and access to screening where mammograms are not available. They will launch a pilot program in India soon.
Lindsay Yazzolino, a part-time research coordinator in Bedny’s lab who is blind, says she hopes Discovering Hands can raise awareness, not that blind people have "super" senses, but that there are places in every profession where blind people can excel.
“On one hand, there’s this tendency to think that blind people are superhuman, but then also that blind people have extreme deficits, too,” Yazzolino says. “I think on both counts people can be misguided. People think that I can hear a pin drop from 50 miles away, and those same people are amazed to see that I’m walking around by myself in my neighborhood.”
She says she always wanted to be a scientist when she was growing up. When she heard that in other countries, blind people often had to become massage therapists as their only career choice, it bothered her that they didn’t have the same opportunities she did.
“I think it’s important for people to know that blind people actually can have lots of different careers,” she says. “There’s plenty of blind women who might not want to palpate breasts, and there would be some who would. It’s important for people, when they hear about this, to have it phrased as: this is an option. This could be a really good option for people who choose to do it."
At Discovering Hands, Hoffmann is giving Simon the chance to use her psychology degree, alongside her role as a breast examiner. She will act as a counselor for other MTEs to come to with any personal or professional problems. “It’s a really good opportunity for me to do both,” she says. “Before, I was wondering if all the studying had been in vain.”
Simon thinks that besides Discovering Hands offering blind people that kind of personal fulfillment, it provides a chance for the community to interact with blind people too. Her patients often feel comfortable enough after their examinations to ask her questions, like how she reads emails or walks home, questions she’s happy to answer. Seeing blind people holding a job in the medical profession could challenge beliefs people have about what blind people can do, she says.
“Just one thing is missing: the eyes,” she says. “I think that’s what many people don’t understand. They ask me whether I can walk, or talk to me as if I couldn’t hear, or ask someone else to tell me something even though I’m standing next to them. We are normal people. We can answer, we can talk, we can think, we can do everything, just not see.”
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