A Million Years with You (26 page)

A day or two later we camped beside a river. Had we known it was called the East Alligator River we would have camped somewhere else. We didn't have a tent—we just put our sleeping bags on the ground. During the night we heard something very large come out of the river, as if a sunken, overturned boat were being lifted straight up from the water. The biggest crocodiles in the world are in northern Australia. They can be forty feet long and are responsible for more human deaths than any other kind. I wasn't sure we'd heard a crocodile, but anything big enough to displace all that water would not be good, so we got in the car. There we spent a miserable, bug-bitten night listening to something dragging slowly around on the gravel until, what seemed like hours later, we heard a second, more modest splash, and then silence. No doubt whatever it was went back in the river. We stayed in the car.

We also went to Kakadu National Park, because Stephanie had learned of a certain cave or rock shelter where there are classic examples of Aboriginal art. She wanted to see them. But we were told by a park ranger that the cave was almost a mile away over soft sand and no road led to it, just a trail. He didn't think that Stephanie in her wheelchair could get there. But she wanted to try, although the day was very hot and the sand would have been difficult for anyone, let alone someone in a wheelchair. Nevertheless she pushed through the sand all the way to the cave and saw the paintings. When we returned to the car, hot and tired, we found a group of park rangers who had gathered just to look at her. With considerable respect, they told her that they had never thought she'd make it, that they were planning to rescue her, and that she had surprised them. Their hats were off to her, they said.

Australia wasn't the only place where remarkable things happened. On our way there we stopped in Fiji, where her favorite teacher, an anthropology professor, had done fieldwork. He had given Stephanie an introduction to an important Fijian healer, who, when we met him, offered to mend her spinal cord. The healer said he often did this and had cured many people. We knew it wasn't possible, that the people he had cured probably had different kinds of injuries, but we felt that the anthropological opportunity was too good to miss, so we agreed.

The healer hadn't mentioned payment, so we asked around and were told that a large fish might be appropriate. We bought a very large fish and went to his village, which was on a mountainside. There he lent us his sister's house. The sister wasn't there but her late husband was—in a large, concrete tomb just outside the window. The healer treated Stephanie twice a day, rubbing her spine with a dark-colored liquid which he carried in a gourd. For modesty's sake, he brought his granddaughter with him. She was a sweet girl about twelve years old whom her grandfather was training to be a healer. It was she, not her grandfather, who treated Stephanie below the waist.

The treatment was supposed to take two weeks, but for the last two days the healer couldn't be there, so he empowered me to rub in the liquid. We continued the treatment on the first day, but on the second day we didn't bother because we knew it wouldn't work. And then, thinking no more about it, we went on to Australia and back to the United States.

There Stephanie saw her neurologist because she was having phantom pain. Ever since the accident she'd had phantom pain—it had nothing to do with Fiji. But when the doctor examined her, he found that when he pressed a place on her thigh, her foot moved. He couldn't believe it. Supposedly, movement in her legs was gone for good. He scratched his head and reviewed his notes and said that she'd had no such reaction the last time he'd examined her.

What to make of this? I left it to Stephanie to tell the doctor about the Fijian healer, but she didn't want to. Later I wrote to an ethnobotany professor to ask if the Fijian healer might be on to something. The professor wrote the nicest letter in return but didn't know about the medicine. I also asked Stephanie's anthropology professor what he thought and he said, “I would never exclude the intervention of a god.”

Well, that's what happened. Stephanie had a tiny amount of return. We were later to learn that paraplegics do experience such things without Fijian medication, but I kind of wish we had finished the treatment. We'll never know what might have happened if we had. None of us think for a minute that she might have been cured, but that's just guessing.

However, she didn't necessarily want to be “cured.” She had come to feel that she was fine as she was. That same year she went back to Fiji by herself, not because of the healer but because while there she'd met a woman doctor who, like the Kakadu rangers, was impressed with her abilities and offered her a job teaching the skills of independent living to newly disabled Fijians.

She worked in Fiji for about a year. When she came home, she bought a Honda sedan with hand controls and drove herself to El Paso, Texas, where she'd been offered a similar job. She also met the man who had been sleeping in the Bronx on the night she was born. Since then he had been drafted into the army, served in Vietnam, become a quadriplegic in a truck accident, done his rehab in the veterans' hospital in New York made famous by the film
Born on the Fourth of July
(which truthfully showed rats running around under the beds), and been elected president of the Texas branch of the Paralyzed Veterans of America. When Stephanie met him, he was working at two centers for independent living while volunteering for VISTA with the Coalition of Texans with Disabilities. He lived in a mobile home near Austin.

Stephanie called me up one night to tell me she'd met someone. She had never said a word about any of her former boyfriends. Evidently this was serious. A few nights later she called again. She really liked him. She'd found a job in Austin and was moving there. Who was this man? I had no idea, as Stephanie, who likes her privacy, did not describe him.

So all I knew about him was that his name was Bob. But when the phone call ended, I said to myself,
Well, Bob, whoever you are, if I know my daughter, your bachelor days are done
. And so they were. Bob and Stephanie moved into a modest, bungalow-type house near the University of Texas in Austin. They were married later by a judge in the yard behind the house, followed by a party with beer, food, and live klezmer music. Stephanie insisted on paying for the wedding herself, despite the fact that Steve and I wanted to pay for it. She'd come to carry self-reliance to extremes.

And then, in Austin, together with large groups of other disabled people, most of them in wheelchairs, Bob and Stephanie began the work that would change public transportation.

 

Their organization is called ADAPT. They were among its leaders. “We Will Ride,” said the people of ADAPT, and if today you see trains, buses, and subways with disabled people on them, it's because ADAPT, with my daughter, her husband, and many others like them, stopped traffic in cities all over the country, chained themselves to the fronts of buses, got roughed up, got arrested, got dragged off to jail, went back to the streets, chained themselves to different trains and buses, and otherwise pointed out to the higher-ups of public transportation that their vehicles weren't going anywhere unless disabled people could ride them.

I was moved to learn of one of their actions, which took place in St. Louis and was particularly rough but won them the admiration of the police chief. When he appeared on television to be interviewed about the demonstration, he wore an ADAPT headband.

 

ADAPT became a force to deal with. ADAPT of Texas was such a force that the Texas state legislature began to consult it. I was privileged to attend two back-to-back legislative hearings with Bob, who was representing a splendid group called Not Dead Yet. This group opposed physician-assisted suicide and also a tenet called “futile care,” by which physicians can terminate the care of someone they believe to be hopeless. Why would Not Dead Yet hold these views despite the seeming lack of political correctness? Because disabled people are more likely than others to be the victims of these practices. The leader in this matter, the well-known professor of bioethics Peter Singer, had recommended that certain disabled people, such as infants born with disabilities as well as adults who acquire severe disabilities, be put to death or allowed to die because, according to Singer, their lives will be miserable, and anyway, if they lack cognitive abilities as newborns do, in Singer's view they are nonpersons.

Oh really? I think of our son's brother-in-law, Ben, who was born with spina bifida. The obstetrician believed that the baby should not live. But Ben's mother was a tigress when it came to protecting her children. Horrified by the doctor, she left the hospital with her baby very much alive and raised him to adulthood. By the time he was in preschool he had his own wheelchair and could handle it. He grew up to be a brilliant, well-educated young man with strong political talents, living independently and holding down a good job in Washington. He's also witty. A gay man, he said that if Sarah Palin became president of the United States, she would change our name from
Homo sapiens
to
Hetero sapiens
. On the humor scale, that has to be a ten. And Ben would be nothing but dust if his mom had trusted the doctor. So much for Peter Singer.

 

Bob didn't particularly want to attend the hearings. He'd already attended dozens like them which produced no results, and on our way there, he predicted that nothing would come of these two either. Even so, many of the legislators were very glad to see him and hurried over to thank him for coming. I sensed the esteem in which he was held by the warmth with which people greeted me when they learned I was his wife's mother. Women are seldom praised for being someone's mother-in-law. I was honored and delighted.

But I soon began to see his point. The hearings went on for hours. Doctors lined up to say why they, rather than the families of their patients, should decide whether the patients should live or die. Not Dead Yet argued that disabled people would be the victims of questionable decisions. Someone brought up the fact that in Texas at the time, the parents of a disabled girl were trying to prevent her care from being terminated. Another often-mentioned case was that of Terri Schiavo, the young woman who was deep in a coma whose parents wanted to continue her care although her husband wanted it to stop. The husband testified that while she was still in good health, she had said she didn't want to be a vegetable. Would any healthy young person say anything else? Her husband was already dating the woman who would replace her, so why couldn't he have left her to her parents? Perhaps he no longer wanted her, but her parents certainly did. She was responding to them, they insisted. But the courts sided with the husband. Terry Schiavo is dead.

Thus I found myself clearly on the side of Not Dead Yet. Like Schiavo's parents, I too would do everything I could to preserve the lives of my children, and I also saw how the disabled people in our own family could fall victim to such reasoning. The one with spina bifida almost did.

 

As Bob had predicted, nothing was resolved by the hearings. This sheds a bit of light on why ADAPT took its battles to the streets. Direct action had been more successful. Once when Bob and Stephanie were involved with the Texas legislature on another matter, Stephanie lost patience and said privately, “Oh, why don't we just have an action? That would get their attention.” She wasn't serious, but what she said was true. Civil rights are not given to those who need them. They are wrested by force from an uncaring public when large groups of people take to the streets and fight until they win.

That was why ADAPT had actions. All were planned in an unusual but admirable way, in that ADAPT had no formal leadership—no president, no underlings—so that its members worked by consensus. This reminded me of the Ju/wasi, who did the same. Like the Ju/wasi, everyone at the ADAPT meetings who wished to speak was heard and taken seriously. It was nice, noting that someone who had joined recently was being heard with as much respect and attention as were the long-time veterans.

All the actions I attended were highly memorable. The most grueling action that I was privileged to see involved the American Public Transportation Association—the lobby group for the transit industry—when it held its annual convention in Montreal. A large group of ADAPT activists, Bob and Stephanie among them, set out for Canada to join with Canadian activists, and on the way Stephanie phoned to say where she was going. By then I'd been elected to the board of selectmen of our town, and I had been on my way out the door to attend a meeting. So after her call I got in the car. But on the way down the driveway I began to wonder. Would I rather turn left at the corner and go to the meeting? Or would I rather turn right, go north, and see my daughter do her thing? I turned right and went to Canada.

The demonstration at the Montreal convention had been so enormous that traffic was gridlocked for miles outside the city. It took me several hours to penetrate the outskirts of Montreal, and by then night had come and the demonstration was over. I asked a passing policeman where the demonstrators might be found. Of course he knew what demonstrators I had in mind, and he directed me to the courthouse, a tall midtown building where my daughter and many others were jailed on an upper floor.

I went in. The prisoners were not allowed visitors, so I waited. During the night I talked to the guards and to a lawyer who I had been told was the prisoners' lawyer. He was actually the prosecutor, but he was a man of honor, and when the trial began—at three o'clock in the morning in order to avoid media coverage—he did not mention some of the things I had carelessly told him about my daughter while trying to learn if I could bail her out. I'd said she'd been in jail before for the same reason. The prosecutor admitted to the judge that he had additional information about one of the demonstrators, but because he had obtained it in an improper manner, he wouldn't reveal it.