Days of Grace
Page 16
The shadow fell across me recently on one of the brightest days, literally and metaphorically, of my life. On August 30, 1992, the day before the U.S. Open, the USTA and I together hosted an afternoon of tennis at the National Tennis Center in Flushing Meadows, New York. The event was a benefit for the Arthur Ashe Foundation for the Defeat of AIDS. Before the start, I was nervous. Would the invited stars (McEnroe, Graf, Navratilova, et al.) show up? Would they cooperate with us, or be difficult to manage? And, on the eve of a Grand Slam tournament, would fans pay to see light-hearted tennis? The answers were all a resounding yes (just over ten thousand fans turned out). With CBS televising the event live and Aetna having provided the air time, a profit was assured. The sun shone brightly, the humidity was mild, and the temperature hovered in the low 80s.
What could mar such a day? The shadow of race, and my sensitivity, or perhaps hypersensitivity, to its nuances. Sharing the main stadium box with Jeanne, Camera, and me, at my invitation, were Stan Smith, his wife Marjory, and their daughter Austin. The two little girls were happy to see one another. During Wimbledon in June, they had renewed their friendship when we all stayed near each other in London. Now Austin, seven years old, had brought Camera a present. She had come with twin dolls, one for herself, one for Camera. A thoughtful gesture on Austin’s part, and on her parents’ part, no doubt. The Smiths are fine, religious people. Then I noticed that Camera was playing with her doll above the railing of the box, in full view of the attentive network television cameras. The doll was the problem; or rather, the fact that the doll was conspicuously a blond. Camera owns dolls of all colors, nationalities, and ethnic varieties. But she was now on national television playing with a blond doll. Suddenly I heard voices in my head, the voices of irate listeners to a call-in show on some “black format” radio station. I imagined insistent, clamorous callers attacking Camera, Jeanne, and me:
“Can you believe the doll Arthur Ashe’s daughter was holding up at the AIDS benefit? Wasn’t that a shame?”
“Is that brother sick or what? Somebody ought to teach that poor child about her true black self!”
“What kind of role model is Arthur Ashe if he allows his daughter to be brainwashed in that way?”
“Doesn’t the brother understand that he is corrupting his child’s mind with notions about the superiority of the white woman? I tell you, I thought we were long past that!”
The voices became louder in my head. Despite the low humidity, I began to squirm in my seat. What should I do? Should I say, To hell with what some people might think? I know that Camera likes her blond dolls, black dolls, brown dolls, Asian dolls, Indian dolls just about equally; I know that for a fact, because I have watched her closely. I have searched for signs of racial partiality in her, indications that she may be dissatisfied with herself, with her own color. I have seen none. But I cannot dismiss the voices. I try always to live practically, and I do not wish to hear such comments on the radio. On the other hand, I do not want Austin’s gift to be sullied by an ungracious response. Finally, I act.
“Jeanne,” I whisper, “we have to do something.”
“About what?” she whispers back.
“That doll. We have to get Camera to put that doll down.”
Jeanne takes one look at Camera and the doll and she understands immediately. Quietly, cleverly, she makes the dolls disappear. Neither Camera nor Austin is aware of anything unusual happening. Smoothly, Jeanne has moved them on to some other distraction.
I am unaware if Margie Smith has noticed us, but I believe I owe her an explanation. I get up and go around to her seat. Softly I tell her why the dolls have disappeared. Margie is startled, dumbfounded.
“Gosh, Arthur, I never thought about that. I never ever thought about anything like that!”
“You don’t have to think about it,” I explain. “But it happens to us, in similar situations, all the time.”
“All the time?” She is pensive now.
“All the time. It’s perfectly understandable. And it certainly is not your fault. You were doing what comes naturally. But for us, the dolls make for a bit of a problem. All for the wrong reasons. It shouldn’t be this way, but it is.”
I return to my seat, but not to the elation I had felt before I saw that blond doll in Camera’s hand. I feel myself becoming more and more angry. I am angry at the force that made me act, the force of racism in all its complexity, as it spreads into the world and creates defensiveness and intolerance among the very people harmed by racism. I am also angry with myself. I am angry with myself because I have just acted out of pure practicality, not out of morality. The moral act would have been to let Camera have her fun, be cause she was innocent of any wrongdoing. Instead, I had tampered with her innocence, her basic human right to act impulsively, to accept a gift from a friend in the same beautiful spirit in which it was given.
Deeply embarrassed now, I am ashamed at what I have done. I have made Camera adjust her behavior merely because of the likelihood that some people in the African American community would react to her innocence foolishly and perhaps even maliciously. I know I am not misreading the situation. I would have had telephone calls that very evening about the unsuitability of Camera’s doll. Am I being a hypocrite? Yes, definitely, up to a point. I have allowed myself to give in to those people who say we must avoid even the slightest semblance of “Eurocentric” influence. But I also know what stands behind the entire situation. Racism ultimately created the state in which defensiveness and hypocrisy are our almost instinctive responses, and innocence and generosity are invitations to trouble.
This incident almost ruined the day for me. That night, when Jeanne and I talked about the excitement of the afternoon, and the money that would go to AIDS research and education because of the event, we nevertheless ended up talking mostly about the incident of the dolls. We also talked about perhaps its most ironic aspect. In 1954, when the Supreme Court ruled against school segregation in Brown v. Board of Education, some of the most persuasive testimony came from the psychologist Dr. Kenneth Clark concerning his research on black children and their pathetic preference for white dolls over black. In 1992, the dolls are still a problem.
Once again, the shadow of race had fallen on me.
I AM ALMOST always aware of race, alert to its power as an idea, sensitive to its nuances in the world. Like many other blacks, when I find myself in a new public situation, I will count. I always count. I count the number of black and brown faces present, especially to see how many, if any, are employed by the hosts. For example, when I had a heart attack in 1992 after taking part in a demonstration against the U.S. policy concerning refugees fleeing Haiti, I was not too distressed to count the darker faces in the emergency room at New York Hospital, where I have often been. I saw some Filipino nurses, and far fewer blacks. One black nurse sounded Haitian. I saw a black female resident in cardiology, a young doctor from Cornell Medical School.
As might be expected, the floors were cleaned mainly by blacks. Two of the cleaners, both Haitian women, confided to me that they had heard about my participation in the demonstration, and that they appreciated what I had done. What I didn’t tell them, but certainly thought, was that I would have been just as happy to do it if the people were Swedish rather than Haitian, if the Swedes were similarly oppressed. I am sure race had something to do with my decision to take part, but I would like to think that the dominating factor was that I saw an injustice being done, and decided to do something, however small, about it.
In my world, as privileged as it can be at times, there is absolutely no escape from race. My AIDS condition should be a matter purely of science and medicine, but race casts a further shadow over it. AIDS surfaced in America as a disease of drug users and gay people—and people of color, specifically Haitians at first, then sub-Saharan Africans in general. In a time of bewilderment about the disease, Haitians came under a terrible and unjust scrutiny because of reports that they represented a special risk. Then came more and
more reports that AIDS might have started in Africa.
Certainly the spread of the disease there has been connected to casual heterosexual practices and a resistance to contraception. But no credible and respected scientist, as far as I know, has talked about Africa and AIDS in terms of blame or shame. Still, to many black Americans and Africans, this connection represented only the latest stigmatization of Africa as a center of evil and misfortune.
The gravest allegation made in connection with AIDS is that it did not come into being naturally but was created in the laboratory. One possibility is that it came about as the result of an accident, with fateful consequences. The other scenario, advanced by more people than one would think, is that AIDS was deliberately developed in a laboratory for the purpose of genocide. How else to explain, some people have argued, why its main targets are people tagged as social outcasts, such as drug users and homosexuals, and the darker peoples of the world, especially people of African descent? The filmmaker Spike Lee, a highly influential man among young blacks especially, has associated himself publicly with this position.
I myself reject the likelihood of a deliberate, genocidal creation of AIDS by racist, homophobic, puritanical white scientists. However, for a person of African descent like me who actually has AIDS, the main practical aspect of the controversy concerns the use of a drug called Kemron. No therapy for AIDS is more saturated with political and racial associations. Kemron was developed at the Kenyan Medical Research Institute in Nairobi, Kenya, by Dr. Davy Koech and a clinician, Professor Arthur Obel. On July 25, 1990, the president of Kenya, Daniel Arap Moi, announced its development to the world. Present at this gathering of scientists, researchers, and other interested persons was a delegation of African Americans from the United States. Among the black Americans was Dr. Abdul Alim Muhammad, who was there on behalf of Louis Farrakhan’s Nation of Islam (or Black Muslims, as they used to be known). Another black American physician present was Dr. Barbara Justice, who had brought fifty AIDS patients to Nairobi for treatment.
All the visitors had been drawn by reports of “miraculous” results in patients taking Kemron. Indeed, given the strong suggestion that a cure for AIDS had been developed, the wonder is that many more visitors had not attended the ceremony. Dr. Justice believes that “if these reports came from anywhere else, it would have caused a stampede.” Doctors Koech, Muhammad, and Justice agree that racism and reactionary Western notions about Africa have prevented the Western media from reporting on Kemron, despite the involvement of the U.N.’s World Health Organization in its use.
I myself do not have to be convinced that Europeans are skeptical about scientific claims by Africans emerging out of Africa, or that many whites do not associate scientific discoveries with blacks. The image of Africa remains disfigured by notions of ignorance and superstition that were so carefully draped about the continent over the centuries. But I am not going to ingest a drug simply to show support for the notion that science can flourish in Africa. I need proof that the drug works. Accordingly, I sought such proof.
Probing the matter, I found out that Kemron basically resulted from observations about cattle made by some veterinarians from Texas who were working in Kenya. These doctors noticed that when cattle were infected with retroviruses, they developed runny noses exactly the way people get runny noses from a virus. Tested, the nasal discharge of the cattle was found to be rich in the substance known as alpha-interferon. When a drug was developed based on this information and given to cattle affected by the viruses, they recovered faster. When they received it before an infection broke out, they seemed to escape the symptoms of the disease.
Apparently, Dr. Koech approached HIV as he would approach any other virus, such as influenza. We have no cure for influenza, but we treat its symptoms when they appear. We get rid of the symptoms, then wait for the next appearance of these symptoms before we treat them again. He decided that, following the example of infected cattle, he should concentrate on the nose and mouth in applying alpha-interferon to humans; and he also worked to find the proper dosage (which turned out to be fairly low) for human application. He would treat its symptoms with the alpha-interferon drug he called Kemron. At one point, Dr. Koech reported that 97 percent of his patients showed a positive response to the drug. He even reported that 10 percent of his patients became HIV-negative following treatment—although this doesn’t mean that they were cured.
When I first heard about Kemron, I was excited. Two black-owned newspapers in New York City, the Amsterdam News and the City Sun, as well as the black-owned radio station WLIB, which commands a dedicated following among many low-income blacks in the city, trumpeted the news about this breakthrough in AIDS research from Africa. Assailing the Western medical establishment for refusing to acknowledge the radical power of Kemron, some writers and speakers ventured to say that racism lay behind the skepticism about Kemron. (Incidentally, since alpha-interferon is a natural substance, it cannot be patented, and no drug company can have exclusive rights to its production and sale. This fact has featured prominently in some explanations of why Kemron has not been pursued more actively as an AIDS treatment in the United States and Europe.)
My AIDS physician, Dr. Henry Murray, is an open, considerate man. Too many doctors are remote or patronizing, but he encourages me to read about the disease and talk with him about the latest trends and medications. However, when I told him about this fantastic development from Africa, he was unimpressed.
“Oh, we know all about it, Arthur.”
“Kemron? From Africa?”
“Oh yes, it’s a form of alpha-interferon.”
“Right, Hank,” I said. “Shouldn’t I think about trying it?”
“Well, the latest data I have seen doesn’t support their claims.”
“But the Kenyans have statistical evidence that Kemron works,” I countered.
“Well, maybe it works for them,” Dr. Murray said. “No one here has been able to duplicate their results, and many reputable people have tried. Perhaps later studies will show something positive.”
This was too important a matter for me to drop without further inquiry. As it happened, I had been invited to Washington, D.C., to see the U.S. Secretary of Health and Human Services, Dr. Louis Sullivan. He graciously offered to help me in my inquiries. For our meeting, Dr. Sullivan invited Dr. Anthony Fauci, who runs the Office of AIDS Research, a section of the National Institutes of Health. Apart from Dr. William L. Roper, who runs the Centers for Disease Control in Atlanta, Dr. Fauci is probably the government’s leading American expert on AIDS. Kemron was only one of the many topics we discussed.
“Believe me,” Dr. Fauci said, “the issue of AIDS and Africa and Kemron is far too sensitive for us to brush off even if we wanted to, which we do not.”
“But have you given Kemron a fair shot?”
“I would say so. We instituted eight separate clinical trials to see if the claims for efficacy were genuine or not. At this time, we have the results from seven of the trials and we are waiting on the last one.”
“And?”
“We won’t do anything until the last trial results are in. But I can tell you, right now it looks as if we will have to reject Kemron. We have no hard evidence yet that it does any good. But something may yet emerge.”
We discussed the skepticism among many blacks, as well as some whites, about the medical profession and medical research, and about some of the factors that had led to that skepticism. The infamous Tuskegee experiment, in which several black men had been abused in the name of scientific research on syphilis, was one factor. There was also the widespread belief that some of our major pharmaceutical companies routinely try out their drugs on people in Third World countries and conduct clinical trials only in the United States.
I left enlightened but still puzzled. I don’t think for a second that the Kenyans were deliberately faking their data; but if so, eventually they would be found out.
Some time later, I met Dr. Justice, who ha
d. been present at the presidential press conference in Kenya when the efficacy of Kemron had been proclaimed. I like her. Professional but warm, friendly, and caring in her manner, she doesn’t always dress like most New York doctors. Instead, her colorful clothing often reflects her love of Africa. She is obviously driven by her desire to help her patients. When she talks about medicine, she does so passionately and yet with apparent objectivity. Just as obviously, she exudes race pride.
I told her what Dr. Sullivan and Dr. Fauci had said about Kemron. She laughed, if a little sadly.
“I can tell you, Arthur, my patients are helped,” she insisted. “They aren’t cured, but they are definitely helped. Kemron is nontoxic, which is wonderful. It doesn’t destroy the patient in order to save him, like AZT. In combination with other therapies, it works.” But her comment seemed a retreat from the word “cure” I had seen in earlier headlines.
As for the NIH clinical trials, Dr. Justice insisted that they had not been fair; the samples of Kemron used had not been identical to that used in Kenya. The cards were stacked against the drug, she declared, just as the cards are stacked against any treatment that doesn’t originate with a major company in the United States.
Science, race pride, and compassion are not incompatible, but in this world they often seem that way. In October 1992, I met a young black man, a teenager, who illustrated this point. I was walking across the campus of the Niagara County (N.Y.) Community College, where I had gone to deliver a speech, when he stopped me. While I wouldn’t say that he confronted me, he was definitely intense in his approach.
“Brother Arthur, have you seen this? You need to read this, brother.”
A member of the Nation of Islam, he was carrying a copy of their newspaper, the Final Call, from October 7, 1991. The headline read: “AIDS Treatment Found in Africa.” He wanted me to read the story, which was about Kemron. “This can help you, brother. White people are keeping the truth from you.” The young man talked to me at some length. He was not particularly articulate, but he was earnest and genuinely wanted to help me.