• Chris McMillan

The Boy Who Learned to See — and What He Teaches Us About Vision\

Wall Street Journal

18th June 2021

The Boy Who Learned to See — and What He Teaches Us About Vision

By Susan R. Barry

To ask a blind person to acquire the sense of sight after childhood is to ask them to reshape their identity. They may have functioned quite independently when blind but now find themselves as vulnerable as a young child. With their new sight, they can see but cannot recognize a flight of stairs or a loved one’s face. Bombarded by visual stimuli they don’t understand, many who gain sight in adulthood become despondent, reject their vision or even lose the will to live.

At first blush, vision seems a purely mechanical process. Photons hit the light-sensing pigments in the retina of the eye, triggering a cascade of electrical and chemical events that send signals to the brain about light, color and motion. Yet these events tell only part of the story. Even if we all possessed identical sensory structures, we would each perceive a different and very personal version of the world, a version built upon our experiences, needs and desires.

‘Perception is not something that happens to us, or in us. It is something we do.’

— Alva Noë, philosopher

As the philosopher Alva Noë has written, “Perception is not something that happens to us, or in us. It is something we do.” We move our body, head and eyes to look and listen, to take in information about the world. Since we direct what we see, developing vision as an adult is an intensely active process. A new pair of eyes won’t lead to vision unless the owner of those new eyes pays attention to what he is sensing and figures out its meaning.

I first met Liam McCoy in 2010, when he was 20, five years after he had undergone sight-restoration surgeries. The operations added a powerful artificial lens to each eye without removing the eye’s natural one. I was introduced to Liam through his surgeon, Dr. Lawrence Tychsen, a professor of ophthalmology at Washington University in St. Louis. Dr. T. (as Liam calls him) cares for children with neurological impairments, often so severe that other doctors consider them too difficult to evaluate and treat.

From the moment Liam was born, it was obvious that there was something different about him. His hair was metallic silver, and blood vessels were plainly visible through his very light-colored skin. “Oh my God!” the nurse exclaimed as she rushed from the delivery room. Moments later, she returned with the doctor, who took one look at the newborn and hurried out too. When the doctor returned, Cindy, Liam’s mother, now deeply concerned, asked what was wrong. “Oh, he’s a towhead; he’s a cotton-top,” the doctor responded.

Liam wasn’t completely blind, but his zone of clear vision extended only 3 inches from his nose.

From the start, Cindy suspected that her child had albinism, a diagnosis that was confirmed when he was 17 months old. Albinism, or a lack of the pigment melanin in the hair, eyes and skin, is a rare condition, affecting only one in 17,000 people. Since Liam’s eyes lacked melanin, he was extremely sensitive to bright light. He also had nystagmus, an involuntary oscillating movement of the eyes. As a child, Liam told me, he could not willingly look at anything.

Albinism wasn’t the only source of Liam’s poor vision. He was also extremely nearsighted. Dr. Tychsen explained that Liam was living in “a cocoon of visual blur.” He wasn’t completely blind, but his zone of clear vision extended only 3 inches from his nose. As a result, his visual development was severely disrupted, and the surgeries he underwent at age 15 were only the beginning of his vision restoration.



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