Student Scene
 Ellen Rothman Photo by Graham Ramsay |
Group Gives Enabling Support
As I got out of my car in the middle school parking lot, a dusty white pick-up pulled up behind me. A hefty Navajo man sat in the driver's seat, his left elbow casually hanging out the open window. It was a small truck with just a two-person cab. A hunched shima, or grandmother, sat on the passenger side. Her bright, floral head-covering, favored by women of her generation, seemed to barely clear the dashboard."You know anything 'bout that Johnson Benally support group?" the man asked. He was looking for the first meeting of a support group for people with spinal cord injuries. The group was dedicated to the memory of Johnson Benally, whom I wrote about in my previous column (WebWeekly, May 12, 2003). Last winter, after a long struggle with alcoholism, Johnson fell out of his wheelchair while intoxicated and froze to death.
Wheels
By 11 a.m., a large group had congregated. The man from the pick-up now sat at the edge of the group in a wheelchair. "Hello, my name is Clayton. I'm a T12 para, and I've been like this for seven years," he said when his turn came to introduce himself. "I'm here tonight mostly because of Johnson, in his memory."Halfway across the circle, I recognized Merlina. Her sister, Marlena, was sitting next to her. She had become a quadriplegic more than 17 years previously in the same car accident that had made her sister into a paraplegic. People often marveled at how independent she was-raising a family, driving her own vehicle, holding down a job. Marlena was trim, athletic almost, with an infectious energy that kept her constantly leaning forward to better hear the conversation or to ask a question. She seemed so casual in her chair, as if relaxing momentarily before dashing off again. She had some use of her arms, but her hands were wasted and soft, barely functional as she grasped a clipboard between her flaccid fists.
Conversation quickly turned to vehicles. A quadriplegic patient expressed her desire for an accessible van. Currently, her son had to lift her out of her chair and carry her to the vehicle. He had to lift her electric wheelchair into the back and then drive her wherever she wanted to go. The effort required to bring her anywhere left her primarily housebound.
I asked about Clayton driving in his tiny pick-up truck. It didn't seem big enough to have any adaptive equipment.
"It's got nothing," he said. "It's just a regular truck."
"Well, how do you get in and out?" I asked.
"I do all my own transfers." Trucks are quite high, and his cab was tight. I couldn't imagine this enormous man transferring on a small wooden slide board back and forth from his wheelchair. "I usually take my nephew to help me get my wheelchair out of the back." But that day, he had brought his tiny shima.
Marlena immediately perked up.
"Who here drives with a stick?" she asked. She didn't mean manual transmission. She referred to the practice of using a wooden pole to operate the gas and brake pedals on a regular car. Clayton raised his hand.
"Not to put you on the spot," she said, "but do you have a valid driver's license?"
"Sure," Clayton said.
"Well, then it should be pretty easy for you to get your vehicle adapted," Marlena said. She launched into a detailed description of how a handicapped driver's license gives access to adaptive equipment.
Clayton sat quietly listening to the information. When she finished, he said, "It's my driver's license from before my accident."
Accessibility Is Relative
Disability issues have long been buried in the Navajo subconscious. When many live without running water and electricity, handicap accessibility has not been a prominent issue. As a result, many of our patients with chronic disabilities live with a degree of isolation that does not exist in the cities.One of my patients is a 16-year-old girl who became a paraplegic in a car accident last October. She came to see me in clinic soon after her discharge from the hospital. Her father, wearing a large, woven cowboy hat, smiled affably as we discussed her pain medication and examined her scars. "How are things at home?" I asked. "Do you need more supplies to make your trailer accessible?"
"Well, the ramp's a little steep," he said. "But other than that, we're okay."
Several months later I made a home visit. After stopping to ask directions twice, I finally found the "single wide with brown roof, 1 1/4 miles from the Chilchinbeto chapter house," as specified in her address. One quirk of the Navajo Nation is that there are no street names or house numbers. The single-wide trailer was perched high on cinder block stilts. The "ramp" was actually a plank of plywood laid down over the five steps to access the front door. The house was narrow, and her wheelchair wouldn't fit in the hallway, let alone in the restroom.
After the meeting, many of the patients were congregated in the parking lot around Marlena's van. They were admiring her lift and studying the hand controls on the steering wheel.
Marlena called me soon after the meeting to make suggestions for the next one. "It was too short," she said. "Everyone said it was too short."
--Ellen Rothman, HMS '98, now practicing in northern Arizona on the Navajo Reservation
The opinions expressed in this column are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.