Illustrations by Claire Wyman
Bobbing in the middle of the Pacific Ocean, whale conservationist Roger Payne hung onto the side of Ed Roberts’ floating foam chair. The two had ventured into the ocean to find humpback whales, fulfilling one of Roberts’ lifelong dreams. Payne noticed that Roberts, a disability rights leader and quadriplegic, was struggling to speak. Payne removed his snorkel mouthpiece, and Roberts asked the world-renowned biologist to perform what might be, to some, the most mundane act of assistance: to blow his runny nose.
Floating miles from the Hawaiian shore, there were no tissues. Payne would need to help his friend blow the snot into his hand. He squeezed Roberts’ nose and wiggled the pinch, shifting the pressure from one nostril to the other until mucus flowed into his hand. He washed his hand in the salt water and felt a rush of gratitude for this opportunity to help his friend.
Ed Roberts and Roger Payne had met years earlier at the 1984 MacArthur Fellows ceremony in Chicago. After the induction, the new fellows visited the Art Institute of Chicago’s medieval armor collection. Payne found himself strolling through the artifacts alongside Roberts, who zoomed along in his 300-pound customized power wheelchair, speaking in staccato bursts between puffs of oxygen from a respirator tube poised at his lips.
Payne had earned his MacArthur Fellowship by discovering that humpback whales communicate by singing structured and surprisingly beautiful musical melodies. His 1970 album of whale songs was the most popular nature recording ever made, and he became a leading figure in the effort to conserve endangered whale species.
Roberts was being honored for his work as the leader of the American independent living movement, which aimed to move people with disabilities out of dead-end institutions and hospitals into communities where they could live active lives. Paralyzed from the neck down by polio at age 14, Roberts had become the director of the Department of Vocational Rehabilitation under California Governor Jerry Brown in the late 1970s and pushed through many of the first laws for architectural access and disability nondiscrimination.
At the museum, Roberts’ schoolboy irreverence upended the solemnity of the displays. He directed Payne’s attention to the enlarged penis-protecting area of a piece of armor and quipped baldly about the evident manhood of the wearer. With each display, Roberts spoofed the sexual implications of the elaborate costumes and weaponry. Payne struggled to stifle laughter in a dignified gallery and delighted at the casual carnal banter. He wondered, Who is this Roberts fellow and how does he draw me into his luscious merriment?
Payne was entering what one of Roberts’ personal attendants called “The Ed Zone,” equal parts Mardi Gras krewe and unconditional positive regard. Longtime personal attendants Jon Oda and Mike Boyd have often told tales of Roberts and his traveling posse lingering for hours in restaurants. They have countless stories: Like the time when a waitress was visibly uncomfortable with his presence and he asked her, “Tell me about yourself. Do you have a family?” He listened with the demeanor of a skilled therapist. Ten minutes later, after she softened and smiled, Roberts began an ambling dialogue about the menu. “Can you tell us about each of your potato dishes?” He ordered all four of them, so that he and his friends could sample every flavor available. When the overfed entourage finally departed three hours later, the waitress hugged Roberts goodbye.
But Roberts has not always been a moveable feast.
At age 14, after languishing for nine months in a county hospital polio ward, Roberts attempted suicide. Killing yourself takes great creativity when you are paralyzed from neck to toes. The iron lung’s baffle chambers whooshed a 24-hour rhythm of inhalation and exhalation. Only his head peeped out of the end of the colossal steel hull. Chronic indigestion and a lack of appetite came with the poliomyelitis infection. A nurse cajoled and coerced Roberts into eating enough food to sustain his frail frame. Roberts clamped his teeth shut in existential defiance, and his body withered down to 50 pounds.
Describing Roberts’ refusal to eat as a suicide attempt is both accurate and misleading. The poliovirus had stolen a vibrant body from a young athlete, leaving him able to command only his head, one finger and two toes. One thing he could control fully, however, was what entered his mouth. His feeding battle with a demanding nurse represented the boy’s complete rejection of the scant existence polio had left him. He wouldn’t exist in a mechanized tomb staring up at the ceiling of a hospital ward. He refused to inhabit an empty biography.
But the boy’s hunger strike meant more than the oft-stereotyped wish of a disabled person to die. It was his first step in taking control of his life. His fun-loving youth had been traded overnight for a personage seemingly defined by tragedy and pity. In the 1950s, America had zero imagination for a fulfilling life for a person like this, and Roberts had not yet started to reject the diminished life story that society offered him. So his desperate, vaguely conscious demand was that his life gain significance through his own decisions and actions. Whatever body and life remained in the aftermath of polio must devolve fully to his ownership and control. It might not be much, but it had to be his.
His parents ordered the nurse to only feed their son upon request. Within days, the boy decided to eat. It would take him many years to figure out how to live well as a disabled man. But at that first chosen bite, he intentionally took moral title of his unmoving body and undefined life.
Over the years, the friendship between Payne and Roberts blossomed. Whenever his work took him to the East Coast, Roberts visited Payne at the Ocean Alliance, a Boston-area nonprofit Payne had founded dedicated to ocean conservation. Perched high in his wheelchair in the bed of Payne’s pickup truck, Roberts rode the streets of Lincoln, Massachusetts, like the grand marshal of an Independence Day parade. One afternoon, Roberts spied a grassy hillside and wondered how it would feel to hurtle down the steep decline. Payne chased anxiously after his friend as the chair bounded down the slope. At the bottom, he found Roberts smiling, completely satisfied.
Roberts often told Payne that he wished to someday swim with the 30-ton humpback whales that Payne described in a talk he gave to the MacArthur Fellows. He wanted to float with the great, gentle beasts. Payne finally decided to make it happen. One day while working in his office at the Ocean Alliance, he began designing an apparatus to allow Roberts to swim with the mighty humpbacks. He and colleague John Atkinson envisioned a floating chair, stable in the waves. Roberts’ electric respirator would float in a microwave-sized box, delivering oxygen through a five-foot corrugated plastic hose ending in a duct-taped snorkel mouthpiece.
Atkinson contacted a friend who fabricated artificial fiberglass reefs for large aquariums. Mia Grifalconi, an Ocean Alliance staffer, served as Roberts’ body double. She sprawled facedown over a platform of boxes. They wrapped her in plastic sheeting and spray-coated her in quick-hardening, industrial polyurethane foam. After carving and sanding the surface into shape, they framed it with solid fiberglass. Along the edges were affixed rope handles and black cinch straps to fasten across Roberts’ chest and legs.
Over the 1993 Thanksgiving holiday, Payne, Roberts and Atkinson took the chair for a test at the Dolphin Research Center in the Florida Keys. The center was home to the many dolphins that starred in Flipper. Payne arranged for Roberts and his teenage son, Lee, to swim with the trained dolphins in the safe waters of a small lagoon. Jon Oda, Roberts’ attendant, carefully monitored the floating respirator and the oxygen hose. A trainer called a dolphin over to “kiss” Roberts, and it gently nuzzled its beak to his face.
Ed Roberts and Jon Oda, Roberts’ personal attendant, at the Dolphin Research Center in Grassy Key, Florida. Photo by the author
Roberts’ floating chair was designed to spin over like a raffle ticket drum, settling with his face down to view underwater sea life through a diving mask. Atkinson tightened the straps across his torso and legs, affixing him to the chair. The respirator hose sent oxygen to Roberts’ mouth. He exhaled through his nose into the diving mask. A one-way purge valve expelled the carbon dioxide while withstanding the ocean waters.
“What if he needs help?” Lee asked. The father and son worked out a signaling system. Lee dove beneath his overturned father and closely watched his eyes. Two strong blinks constituted a distress call. When the team spun the chair over, Lee dropped into position, and Roberts marveled at the dolphins swimming beneath the surface.
After the successful Florida rehearsal, Payne contacted the Discovery Channel and pitched a documentary television special about the leader of the American disability rights movement swimming with the humpback whales of Hawaii: “Unlikely ocean explorers, an environmental scientist and a disability activist, share the adventure of a lifetime.”
Network executives sent a team of photographers with Payne and Roberts to do preliminary location scouting and filming in the Pacific waters off of Kailua-Kona on the west coast of the Big Island. Payne, Ed and Lee Roberts, Atkinson, and Roberts’ attendant Otto Roderisch flew to Hawaii in April 1994.
Unlike Roberts, who viewed each marine life episode like the next ride at Disneyland, Payne and Atkinson were understandably anxious about dropping their disabled friend into the deep ocean waters with the mighty humpbacks. The waves and sea creatures would be powerful and unpredictable, at a distance over an hour from emergency medical assistance. They planned a trial run in the gentle waters of the coral reef in Kealakekua Bay, to practice handling the respirator and oxygen delivery mechanisms while positioning Roberts beneath the surface.
Chartering a commercial fishing boat in Keauhou Bay, Roberts and crew encountered their first logistical challenge. The only space on the boat large enough for Roberts’ bulky wheelchair was the roof of the cabin. There was no accessible gangplank wide enough for a power wheelchair. The crew stretched the narrow boarding ramp from the wooden dock up to the high cabin roof. Boarding required Roberts to perform a circus stunt, driving his electric wheelchair up a 20-degree grade some 12 feet above the water.
Roberts crept carefully up the precarious catwalk. As he neared the midpoint, a motorboat approached at high speed. It roared past, delivering a wake that heaved and dropped the skinny ramp like a suspension bridge in an earthquake. The uppermost lip of the ramp crept back from the roof of the wheelhouse, withdrawing half a foot with each roll of the waves. Payne saw that the ramp would soon collapse, sending Roberts and his heavy wheelchair plummeting into the bay.
“Ed! Floor it!” screamed Payne. Roberts immediately flipped the joystick control to full throttle. The oversized tires spun. The chair sped forward, skidding to a precise stop at the ramp’s edge. The weight of the chair pinned the plank down, holding it in place as the wake dissipated. Roderisch leaped up to check on Roberts. Huffing to catch his breath, Roberts grinned like a kid who had just ridden the Space Mountain roller coaster.
The following day, the team sailed a 40-foot fishing vessel out from Kailua-Kona to search the Pacific waters for a pod of humpbacks. They finally sighted a gam of long-finned pilot whales. Much smaller than humpbacks, the dark gray, bulbous-headed pilots top out at 20 feet long and weigh up to 3 tons.
Roger Payne and Roberts on a fishing boat off the coast of Kailua Kona, Hawaii.
Approaching the pilot whales required a delicate touch. Payne, Atkinson, Roderisch and Roberts boarded the first motorboat, and two television cameramen, one equipped for underwater filming, followed closely in the second.
The sensitive process of transferring Roberts into a motorboat lashed to the starboard side of the fishing boat took 30 minutes. Although paralyzed, his body retained full somatosensory capability, feeling heat, cold and pain. His frail body was easily injured, and he keenly felt banging and bruising.
Roderisch positioned a rolled-up towel between Roberts’ thin legs — he was wearing a short wetsuit — to keep his knees from bumping together. Moving like a rowing team at the barking commands of the coxswain, Roberts directed a crew of three men to hoist his body with a fabric sling, transferring him gently from the wheelchair into the fiberglass green chair.
Roberts rested for a moment like he was tanning in a pool lounger on the deck. He took one last draw from the respirator tube and began glossopharyngeal breathing, sometimes called “frog breathing.” As a young man, Roberts had taught himself to swallow air, forcing oxygen into his lungs for hours at a time. It was a useful skill when making a speech during the Section 504 sit-in protest for disability rights outside of a San Francisco federal building in 1977, or when an airline inexplicably refused to allow his respirator onto a flight. By his mid-50s, he could frog-breathe for up to five to 10 minutes.
Using ropes, the crew strapped the chair to the boom beneath the stowed sail. They swung the boom across the deck until Roberts hung above the motorboat, and then gently lowered him in. Once Roberts touched down in the motorboat, Roderisch installed the floating respirator box and quickly tucked the hose mouthpiece into Ed’s mouth. With a full puff, he relaxed deeply.
Atkinson raced the motorboat in front of the projected path of pilot whales and cut the engine. Small, soft waves lapped the side of the boat. They would set Roberts in the line of the school of 30-plus whales swimming casually past, greeting the disability rights leader and his team like friendly well-wishers waving at the curb of the Boston Marathon.
The four men worked quickly. Donning a snorkel mask, Atkinson slid into the ocean. Roderisch perched on the side of the inflatable, one leg in the boat and one in the water. Removing the air hose from Roberts’ mouth, Payne quickly scooped up the end of the green chair. He and Roderisch shuttled the floating chair over the side, and Atkinson pulled it into the water. Payne pressed the mouthpiece back into Roberts mouth.
Roberts was comfortable, rising and falling gently in his personal skiff. This was the moment he had dreamed of ever since he first heard Payne’s MacArthur presentation about his whale research. Soon he would be submersed, a diver in the vast ocean, enveloped in the swishing serenity, greeting colossal creatures with eyes of wonder.
As Payne prepared to lower the floating respirator box into the ocean, he told Atkinson, “Duck under. See if you can see the whales.” Atkinson dove beneath Roberts to search for the oncoming school. He burst back to the surface with a horrified expression.
“Rog, there’s a shark down there!”
“Just kick him away,” Payne replied casually. He had often encountered sharks on his research dives, and he knew a little nudge would send it away.
“I can’t kick him away,” Atkinson sputtered. “He’s 14 feet long!”
It was a tiger shark, a species known for eating humans.
Atkinson instantly pressed his shoulder beneath Roberts’ chair. He lunged upward.
Payne clutched the top of the chair desperately. He threw himself backward, stumbling and yanking the chair and Roberts up the side of the motorboat. Roderisch and Payne frantically tugged until the chair fell back into the boat. Atkinson sprung his torso up from the water, and his two friends yanked him to safety next to Roberts.
Everyone was safe. The men fell back in exhaustion, panting for air, filled with the overwhelming rush of what could have happened. The captivating experience of utter fear and adrenaline response pounded through their bodies as they lay sprawled on the floor.
Ever the performer knowing how to play to his audience’s emotions, Roberts launched into a mocking diatribe. “I can see the headlines now. I can see it, Roger. All the TV channels will pick up the story. Roger Payne, famous environmentalist, discoverer of whale songs, MacArthur Foundation genius, fed disability rights activist Ed Roberts to the sharks!”
The biting jest of Roberts’ taunt struck his friends like the tip of a pin meeting a stretched balloon. Exhausted yet pulsing, they exploded in laughter.
Roberts kept at them. “Payne sailed the disabled man into the deep Pacific waters. Then he unceremoniously dumped a paralyzed man into the ocean where a 6-ton man-eating shark turned him into an hors d’oeuvre, a quick and tasty snack.”
During the entire 45-minute motorboat ride back to the port, bouncing over waves as the late day winds kicked up and dark clouds gathered overhead, Roberts continued to pester his pal. “Only the great Roger Payne knew how much tiger sharks love the taste of well-seasoned quadriplegic … ”
Payne, Atkinson and Roderisch bawled with laughter, tumbling over one another in the little boat. Fresh from the jaws of disaster, exalting in the body-high of relief and joy, they loved their friend Ed Roberts perhaps more than ever.