By Ian Halim

The late actor Christopher Reeve first won fame for his 1978 role as Superman. Later, he achieved a kind of second, unwished-for fame when he was paralyzed by a spinal cord injury.

In an iconic scene from the film, Lois Lane – played by the young Canadian-American actress Margot Kidder – nearly tumbles to her death after a helicopter mishap. She’s on her way to an after-hours reporting assignment for the Daily Planet newspaper when the pilot attempts a routine lift-off from a rooftop perch. The landing gear’s skids catch on an errant wire and the helicopter spins out, coming to rest precariously on the cliff-like edge of the skyscraper.

Just minutes before, Lois Lane had turned down a dinner invitation from Superman’s mild-mannered alter ego, Clark Kent. Now, her life hangs in the balance. Kent looks up from the street, spots the helicopter, and searches for the nearest telephone booth where he can transform into Superman – in privacy. Running, he yanks open his shirt sleeves to reveal a red “S” across his chest. Far above, Lois Lane dangles in thin air, gripping her seatbelt. Her hand slips. She falls. Superman streams upwards.

“I’ve got you.”

“Who’s got you?” Lois Lane asks, breathless.

Reeve went on to star in three more Superman movies. For his role in the 1985 TV film, Anna Karenina, he learned to ride horses. And he kept at it, going on to compete.

A decade later, Reeve’s horse stopped short in front of a fence during an equestrian competition in Culpepper, Virginia. He tumbled head-first, and was paralyzed. Later, he became a tireless advocate for spinal cord research, often winning praise for finding a fresh sense of purpose after his accident. Here, in this essay, Reeve’s story will help introduce the biology of the spinal cord and spinal cord injury. At the end of the essay, I’ll also briefly describe the controversy that Reeve stirred with his focus on finding a cure.

To understand the spine, you can start by picturing the bony vertebrae of the spinal column as if they were stacked powdered-sugar donuts, with the stacked holes forming a tube-like interior space. This space is known as the spinal canal and the spinal cord travels vertically within it, running between the tailbone and the base of the brain, known as the brain stem. Disks – known as intervertebral disks – are sandwiched between the stacked donut-layers of hard bone, cushioning them. To keep the metaphor going, you can imagine the discs as jelly between the layers of stacked donuts (though in real life our disks are a bit tougher, more solid stuff than that).

Spinal nerves emerge between each pair of bony vertebrae, radiating out to the various structures of the body. The signals for the arms and hands exit the cord fairly high up, so injuries lower on the cord – where there is no signal for the arms – typically affect the legs but not the arms, resulting in paraplegia. High up in the cord, the signals for the arms haven’t left yet, but are still being transmitted within the cord. So, injuries here – like Reeve’s – typically affect both the arms and the legs, and can result in quadriplegia.

In general, the severity of a spinal cord injury is determined both by how complete it is – meaning how far across the diameter of the spinal cord it extends – and also by how high up it is within the spine. In general, the more complete, and the higher the injury, the greater the losses it inflicts. Reeve’s injury was very high up, shattering his top two vertebrae, in the part of the spine that forms our neck – he cervical spine, named for the Latin word cervix, meaning neck. Because Reeve’s uppermost cervical vertebrae were so badly damaged, his surgeons had to reattach his skull to his spine using bone from his hip and a titanium pin. (Depending on how you define it, Reeve’s spinal cord injury could be described as complete or incomplete, but regardless, it was a very severe injury.)

Nerve signals that tell our limbs to move, called motor signals, descend, sometimes from our brain (though sometimes, as with reflexes, from within the cord itself). These descending motor signals travel down and out to our limbs, where they trigger muscle activation and movement. Signals that carry sensation go the opposite way, ascending from the skin and other parts of the body, then rising up the spinal cord. Separate nerve tracts within the cord – like parallel train tracks, but vertical – carry different signals. One tract, for instance, transmits pain and temperature sensations. But traumatic spinal cord injuries usually don’t discriminate neatly, and often affect at least some motor and sensory functions. Reeve’s injury, for instance, affected not only his arms and legs, but interrupted both ascending signals for sensation and also descending signals for movement.

It’s pretty widely known that spinal cord injuries can affect the function of the arms and legs, since this loss has immediate social implications, often meaning that someone begins using a wheelchair. But the spinal cord also transmits signals to and from internal organs. These functions may be less socially obvious, but they too are vital.

The phrenic nerve, which arises from the spinal cord, transmits signals for the pancake-like muscle below our lungs – the thoracic diaphragm – that helps us breathe. In his memoir, Reeve says his doctor told him his phrenic nerve was intact. At first, he needed a ventilator in order to breathe. But over time, he was able to breathe on his own, for up to 90 minutes at a time.

The spinal cord also transmits signals to our urinary bladder, bowels, and sexual organs. So, when the spinal cord is compressed or injured, it can compromise not just limb movements, skin sensation, and breathing, but also our ability to control our bladder and bowels.

Trauma to the back with loss of fecal and urinary control is extremely serious, suggesting an injury to the cord – or to the nerve tissue that extends below the cord. This nerve tissue beyond and below the cord is no longer tightly organized into a cord. Instead, the strands of nerve tissue here splay out, resembling a kind of ribbon of coarse hair, from which we get the name “cauda equina,” meaning horse’s tail in Latin. Some of the critical functions of the spinal cord continue in these nerve fibers of the cauda equina, so an injury here is still extremely serious, and can still compromise bladder and bowel function.

After his accident, Reeve’s spinal cord injury became a defining part of his life. Once he had recovered from his surgery and months of rehabilitation, he began working in film and television again, but he also spent time advocating for research to cure spinal cord injury. It was this advocacy and speaking that stirred controversy among some within the disability world.

What was controversial was Reeve’s single-minded focus on a cure. Some interpreted Reeve as using his platform to broadcast the message that life could not be good for those who lived with spinal cord injuries or other disabilities, and that the only path to a good life was a cure. The more vigorously Reeve advocated for a cure, the less some thought he seemed to respect life lived with a disability. He was particularly criticized for a Superbowl commercial in the year 2000 that made it look as if he could walk again – a trick of video editing. Some, like the late writer Charles Krauthammer who had also survived a spinal cord injury, thought the ad sent the wrong message, amounting to a denial of medical reality, and discouraging vulnerable people from focusing on things that were within their control that could make their lives better right now.

Shortly after this commercial ran, in an interview on Good Morning America, Reeve went so far as to call those who accepted their own injuries an obstacle to progress: “The biggest problem, actually, is people who’ve been in a chair for a very long time, because in order to survive psychologically they’ve had to accept ‘O.K., I’m going to spend my life in a chair.'” Reeve made it sound like coming to terms with disability and trying to focus on living a good life with that disability was a mistake – even though spinal cord injury remains largely an incurable condition, even now.

Reeve’s dreams for a cure – and the millions of dollars that the Christopher & Dana Reeve Foundation raised to pursue those dreams – have not been entirely in vain, however. In at least one case, an experimental therapy started in 2012 – for a Polish firefighter named Dariusz “Darek” Fidyka – resulted in restoration of function after a spinal cord injury. This kind of therapy may one day become more widely available, but for now, the overwhelming majority of spinal cord injuries have remained lifelong.

In contrast to Reeve’s perspective, according to the social model of disability, a medical cure isn’t the only path for a person with a disability to live a good life. According to this view, much of the problem with disabilities – like those caused by spinal cord injuries – rests not in an impaired function, or a medical problem, but rather in the social response to that disability. Some have even suggested that it is really society that is disabled, if it fails to create a welcoming and accessible physical and social environment for those with disabilities. The problem, on this view, is social, not with the individual – and we don’t have to wait for a cure to make progress.

Some of the solutions emphasized by the social model are tangible – like the sidewalk ramps at intersections known as curb cuts, allowing wheelchairs to go more easily between street and sidewalk. Elevators in subway stations are another important issue. Even in New York–the richest city in the world – many stations lack working elevators. Some progress also depends upon attitudes rather than physical barriers, and on recognizing the potential of those who live with disabilities – to go to school, to work, to have sexual relationships and friendships, to marry – to do all the things that many find make for a full life.

We don’t necessarily have to accept this binary division between medical research and working to make life better for those with disabilities now. But research shouldn’t serve as an excuse not to do the things within our power now.

A bridal shop in the United Kingdom made the news in 2019 when its front window display featured a mannequin in a bridal dress with a twist – she was seated in a wheelchair. Some responded on Twitter by noting they’d never seen this before. Someone tweeted a rare, similar display in Japan.

Children came to take photographs of the window – and to imagine their future.