Jessie Cronan is the Senior Director of the CVI Center at The Perkins School for the Blind, an institution that educates young people with visual impairments and deaf blindness from birth through age 22. (Their most famous graduate is Helen Keller.) The center she helps to run, which launched in July 2021, aims to educate the public about CVI, or Cortical/Cerebral Visual Impairment, and to improve treatment for the condition by encouraging innovation and collaboration. A brain-based disorder, CVI is the leading cause of blindness in children.
Though a number of people from the Perkins School collaborated with the MIT team to help plan the event for Perkins students at the museum, Cronan is the Perkins staffer who is best-versed in neuroscience, so the Dana documentation writer chose her to speak for the group about the day of activity.
Q: Tell me about the organization you help to run, at Perkins School for the Blind.
Jessie Cronan: Although CVI is the leading cause of visual impairment of children in the US and around the world, most people have never heard of it. CVI is brain-based. It’s a neurological issue, usually caused by some form of brain damage, and highly correlated with a ton of conditions. Between 60 and 70 percent of kids with cerebral palsy have CVI, for instance, and 38 percent of kids with Down’s Syndrome do. And yet, despite how common it is, most teachers of the visually impaired aren’t trained to teach kids with CVI. Perkins is really taking the lead with CVI.
CVI tends to hide behind co-occuring conditions, and it doesn’t show up in an eye exam, because it doesn’t affect vision, per se, but rather visual processing. It’s not a static condition either. Heat, temperature, how tired you are, how hungry, can all bring on CVI-related problems with vision. Some adults with CVI will tell us they can’t see when it’s hot, for example.
Similar to how there are nine traits associated with autism, there are sixteen traits or behaviors associated with CVI. One has to do with visual clutter. Some interesting studies have found that kids with CVI will look at a desk crowded with stuff and not see anything on it, but if you clear off everything else and put a red ball on the desk, they can see it just fine. It has to do with the amount of information they’re being asked to take in.
Q: What about the event stood out for you?
Jessie Cronan: Two of the people there, adults who have been blind since childhood, spoke about how much of the world they experience through the tactile experience. As they explained so well, for them, tactile experience goes beyond their hands. They take in their surroundings with the skin on their faces, with what they can feel under their feet, and with what comes through their canes.
Q: Did anything else stick with you?
Jessie Cronan: One of the Perkins people who attended the event is our CVI coordinator, whose son has CVI. She started a club for secondary school kids with CVI, and she and I have decided to replicate the activity we did at the MIT museum for the club. It felt so accessible, like everyone could take part and get something from it. We think it will be so interesting for the kids and for us. [Cronan has been talking with MIT Museum Studio manager Seth Riskin, who led the event, about how to reproduce for the CVI Club.]
Q: Did you decide to replicate it while you were helping to plan for the event? Or did that decision spring up organically out of the event?
Jessie Cronan: It grew organically. As Seth was describing the event, we honestly weren’t that sure what to expect. But we all got so much out of it.
Q: The goal of the Dana Center project is to develop activities that benefit from the contributions of neuroscientists, ELSI scholars, and public engagement, while providing value to people from all three domains. Did participating in the museum event show you ways that these domains might influence each other? Did you take away unique value from working on an activity where those domains intersected?
Jessie Cronan: It got me thinking about how amazing it would be if we could create virtual reality simulations about what it is like to have CVI. It would help us, as fully sighted people, understand how different people perceive the world, and how the different ways of perceiving it influence our perception in general. That was some of what we were doing in the class—trying to get in the way of experiencing everything visually first, and to make the tactile experience the foremost experience.
Also, two people at the event who went blind in later childhood said such interesting things. They framed blindness not as a deficit but really as more like a superpower—the way they are able to tap into so many different senses when they take in the world. That reinforced something we’re doing at the Perkins School, something that is controversial. Our original thinking, which is the dominant way of thinking about what to do for people with CVI, was: We’re going to teach kids how to see. But for kids with CVI, feeling the pressure to pretend that they can see can be exhausting. They find other ways to compensate—they will memorize the books adults read to them, memorize the things in a classroom—and to hide their vision problems, and then they will get out of school for the day and have a meltdown, because they are so tired from compensating. So we’ve come around to thinking that the goal shouldn’t be for the kids to have vision but rather to help them thrive in the world in whatever way makes sense for them.
Q: If you could work with the museum for two years on a project about neuroscience and society that the public could participate in, what would you do?
Jessie Cronan: In a dream world, we’d love to create virtual reality simulations for CVI across the sixteen different visual behaviors that distinguish it. It would be so cool to sit in one of those simulations and think about what it means when we talk about a visual field, how that might be different for different people. To put it together, we’d want to work with leading researchers, as well as kids and adults with CVI, to take the science and make it into something people can really experience. That would be an exhibition that would draw on real lived experience as well as the neuroscience behind it.
But something else an exhibit like that we do is help us raise awareness about this condition, which is relatively very common. And like autism used to be a black hole for parents in the 80’s and 90’s, CVI is in a similar position now. A study out of Scotland found that one in thirty kids in mainstream classrooms there has CVI, which suggests it is shockingly prevalent. And art would be such a fun way to raise awareness.
I’m really excited that the MIT museum is interested in taking this on, because neuroscience can feel so dry and removed from real life. But we all have brains, and our brains are really us. And yet there is so much we don’t understand about them. And something that really excites me about the idea of a center for neuroscience and society is that it could help us all understand more about how we use our brains, and how different people use them differently. And the more we understand, the more compassion we’d have for people different from us, and the more we’d be able to design a world that is really accessible for people. When you do that, people surprise you.