Roll Player

Charles Monson works the system to help fellow quadriplegics get the high-tech wheelchairs they need

Waiting for a white pictograph of a walking man to cue his journey over restless Imperial Highway, a man wearing earmuff headphones is dancing. Partially obscured by fleeting cars, his unabashed beatitude outshines the world of impatient commutes surrounding him.

Behind the wheel of a green minivan sits Charles Monson III. A crown of scars circles his shaved head. Monson spies this dancing man, and his face brightens as if hit by the morning's first sunlight. He pets his brown parvo-survivor pit bull Larry and laughs. "Is he in a wheelchair?"

The Orange resident beams, contentedly silent. A few seconds pass. "Man, that's what it's all about—self-determination. The sunshine on your face. The simple things."

Monson with Robert Casey:  CalOptima had denied Casey's requests for a replacement wheelchair. Photo by John Gilhooley.
Monson with Robert Casey: CalOptima had denied Casey's requests for a replacement wheelchair. Photo by John Gilhooley.

The minivan grinds to a halt—the $70,000 conveyance is in need of a brake job. Monson is parked outside a multi-acre complex in Downey called Rancho Los Amigos National Rehabilitation Center. Inside, lying in one of the center's nearly 400 beds, a man patiently waits for Monson and dreams of reclaiming his independence. Monson, who considers himself to be a friend of the severely disabled and a foe of government bureaucracy, has promised to deliver it.

Monson cracks the windows, turns up the air conditioning, and then clumsily unlatches himself from a system of hooks. The minivan's side door slides itself open. A metal tongue unfurls and lowers to the sidewalk. Monson places his palms on the hand rims of his ultralight wheelchair and applies downward pressure with his arms, propelling himself across the drawbridge to the sidewalk.

Perched in the passenger seat of the idling minivan, Larry watches his master roll away and whimpers.

Outside the entryway of one of the many buildings on the Rancho Los Amigos compound sits a procession of crippled humanity. Some are young, some elderly. Some are waiting for a ride home, some just getting some sun.

Monson pushes himself through the open doorway and rolls through the wide, vacant hallways. Constructed in the 1880s as a poor farm for the sick and indigent of Los Angeles, Rancho Los Amigos' second incarnation was as a polio ward. An old picture on the wall shows a roomful of people encased in iron lungs. After the polio epidemic abated in the 1950s, Rancho was repurposed once again as a rehabilitation clinic for those with spinal-cord injuries and has been one of the top-rated hospitals in the nation for 30 years. In 1955, a doctor there, Vernon L. Nickel, invented the halo, a brace used in spinal-cord injuries that is screwed into the patient's skull.

Monson's wheels squeak at each turn against the waxed, mirror-like red floor. Bored-looking security guards lurk around every corner. Monson says the guards are necessary because of the inordinate number of gang members at Rancho who were paralyzed by gun violence.

Monson's on his way to visit a man he met only months ago, but he probably understands this man's personal struggle better than anyone.

*     *     * 

Before meeting Monson, Robert Casey, 49, had spent the past three years trapped in bed in a nursing home. Sores on his body festered down to the bone. Although he initially went into the facility to heal a single pressure sore, one became many, deteriorated and split open.

Treating Casey—a quadriplegic just like Monson, with no use of his legs and limited use of his arms and hands—requires he be constantly adjusted; the sores are created by his own body weight pressing down on his skin. Casey should be repositioned every two hours. Instead, he says, caregivers at his former nursing home left him lying on his side for eight hours at a time.

For three years, Casey shared a room with two others, separated only by green plastic drapes, at Pacific Haven Health Center in Garden Grove. His bed was near the window. His neighbor to the right lay comatose, and the next neighbor down spoke only Vietnamese.

Monson insists Casey could have aided his own recovery, if only he had the right wheelchair.

Pressure sores are a forever-looming danger for those who have been paralyzed. Without dedicated prevention, they can develop in as little as a day.

Think of it like this, Monson says: When able-bodied people sit in place long enough, their butt begins to hurt. That's because their body weight is suffocating the oxygen from the skin and fat underneath. So they shift cheeks, stand up or contract their muscles. However, people who are paralyzed can't feel if they're getting sore and sometimes don't have the strength to readjust. Before developing his first sore, Casey lived a relatively independent life for 27 years with the help of part-time care providers and an HUD-subsidized apartment in Irvine. He prevented pressure sores thanks to a power wheelchair with a tilt-and-recline system that allowed him to adjust himself. Even with limited arm strength, he could go where he wanted to when he wanted to.

When his wheelchair broke down, Casey applied to CalOptima for a replacement. CalOptima is the Medi-Cal agency that has provided health care for county children, low-income families and disabled people since 1995. The agency's budget is more than $900 million per year, with more than 300,000 members in Orange County.

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