AIDS – The Social Response

THE OPEN MIND
Mary Catherine Bateson and Richard Goldsby
“AIDS … The Social Response”
VTR: 9/24/88

HEFFNER: I’m Richard Heffner, your host on THE OPEN MIND. Many months ago I had the opportunity to see early galleys of publisher Addison Wesley’s new book, Thinking Aids: The Social Response to the Biological Threat, written by my guests today: Anthropologist Mary Catherine Bateson of George Mason University, and Biologist Richard Goldsby of the University of Massachusetts.

Dr. Bateson had joined me then on THE OPEN MIND to discuss AIDS and our response to it as what we called “A Metaphor for American Society.” I quoted and do so again now from the important Bateson-Goldsby thesis that “the AIDS epidemic, as it moves around the planet, is posing new questions” that “it throws certain characteristics of society into sharp relief, just as radioisotopes, moving through the body, can be used to highlight physiological processed for diagnosis.” And today I would like to ask both of my guests: using that radioisotope metaphor, precisely what characteristics of American Society do our responses to AIDS thus far enable us to see more clearly … and, more importantly, to what purpose, to what end: to embrace or to seek desperately to change those characteristics? Dr. Bateson …

BATESON: Well, of course the appearance of AIDS tells you something about what people have been doing in their sexual practices and how they’ve been using drugs, that’s the most immediate thing that it shows, and it shows changes in both of those areas that we know something about. But beyond that, it shows something about the location of ignorance in this society, the location of lack of trust and the location of lack of hope in this society. AIDS is a disease that can be prevented by taking precautions and in order to take precautions you have to have … well, HIV infection can be prevented by taking precautions. In order to take precautions you have to have information, and you have to be motivated to make choices and change your behavior to preserve your own safety and the safety of other people. And where these are absent the disease is going to spread more rapidly. So that it becomes a disease, not just in the United States, but in the third world as well, that piggybacks on ignorance and mistrust and poverty and a lack of alternatives in peoples’ lives.

HEFFNER: Okay, but now we’re not at the beginning of this scourge. We’re coming up now to … what, half a dozen years in which we have been impacted by our knowledge of AIDS?

BATESON: At the beginning of the scourge we didn’t know how it was transmitted or what it was. It was a very different kind of issue. Somebody that acquired the disease 10 years ago had no way of knowing how to change his or her behavior, but now when somebody contracts the disease it’s within a context where, in the larger sense, we have the knowledge. It’s a very different situation.

HEFFNER: Okay, but I wanted to ask you and Dr. Goldsby now we have the knowledge, we’ve had it for a few years and I wonder, on the campus for instance, whether the radioisotope metaphor demonstrates as we follow the course of the disease and of our actions and reactions, whether we’re doing the right thing – if that’s the proper word – whether we’re acting as people who are sufficiently concerned about themselves and for the potential for this disease should be acting?

GOLDSBY Well, certainly the AIDS epidemic has made it apparent to us that we’re not giving students on campus the right, the appropriate kind of sex education, and great efforts are being made to give them more. I think the data as it starts to come in is showing us that the incidence of sexually transmitted diseases is not going down very much on campuses around the country. So one of the things that tells us is that the message may be being broadcast to the students, but their receivers aren’t picking the message up very well.

HEFFNER: But that has to do with the receivers, doesn’t it, as you call them? These individuals are not with the message, necessarily.

GOLDSBY Well, I think the receptivity of populations, and the student population is as good a model as any … In order to be receptive, I think a population has to feel this really: that it’s at risk and that its interests may be compromised. I’m not sure that a number of populations around the country don’t feel that AIDS is something that happens over there, to somebody else. That they’re really not populations at risk. And I think that one of the things the AIDS epidemic is showing us is that we don’t always move as vigorously as we can to see just what the distribution of diseases turns out to be. For instance, if we look at the program of testing for seropositivity, testing to see just who or what groups are infected with the virus and what groups are not, there are large gaps in our information about where the disease is, where the virus is moving. And the campus is another such example. If students on a particular campus actually knew that they were in contact with individuals, some of whom are seropositive, then their behavior might be different.

HEFFNER: Does that mean you are suggesting compulsory testing?

GOLDSBY This whole issue of testing, I think, is something one has to be careful about defining. One type of testing is where you or I might go in to see whether or not we’re seropositive. Under those circumstances, it ought to be a doctor/patient kind of relationship, where strict confidentiality is observed because you’re telling some individual what’s going on. I think we could have a program of very widespread testing where we didn’t identify individuals at all, widespread anonymous testing, where we could determine just where the virus was in various parts of the population and how it was changing from year to year. I’m not sure my coauthor would agree with me on this, but I think that kind of testing, to determine where the virus is in the society from one year to the next, I really think that kind of testing probably ought to be a compulsory sort of census, but thoroughly anonymous.

HEFFNER: Dr. Bateson, I do want to hear you on this. I know whichever one of you wrote on this subject in this rather extraordinary book Thinking Aids, when it comes to the question of a non-individualized testing, you raise the ethical question as to whether you could have the potential for having this information and not make use of it. You might have this information but you’ve cut back, not individual, identifiable testing, but a kind of larger social testing. Now, where do you stand on this matter?

BATESON: I think I’m with Dick on it, but it’s very important to have the information of where the disease is moving in the society and, of course, when you have the information from blood tests you have it long before you have to deal with, for instance, the number of hospital beds you’re going to need because people … the disease has such a long latency period, you don’t have people actually sick. So this is information that’s necessary for social planning. And if that information can be obtained without intruding on the freedom and privacy of individuals, this should be done. Now, there are dilemmas, but if you have a situation where access to anonymous testing is … with results also available to every individual, it seems to me that that ethical difficulty is resolved. One of the things that has not been said clearly enough, I’m not sure we said clearly enough either, is that individuals can use testing in their own personal program for protecting themselves and the people they love and making decisions about altering behavior. You know, if you’re going to alter your behavior, you want to know if it’s going to have an effect. So that I think we’re going to have more and more individuals making personal decisions to be tested anonymously and using that information to adjust their behavior.

HEFFNER: But I musk ask you this question. You made the statement just now about the importance of having a very good idea of what the patterns of the spread, of the nature of the AIDS epidemic is, you talk about its importance. Would you not, then, make testing even on an anonymous level compulsory?

BATESON: I think if it’s on an anonymous level, it’s legitimate to make it compulsory.

HEFFNER: Do you agree on that?

GOLDSBY Well, I think it’s possible to engineer a social setting where you couldn’t know who donated the blood. I think that could be done. You could collect them by Social Security numbers, and then you could secondarily assign another number to each Social Security number, a computer could randomize the data, and there would be no real way you get a particular datum back to an individual. However, I think that people might be more willing to actually go in and find out whether or not they’re seropositive if they were brought up against the issue very clearly, maybe by a program of occasional compulsory testing of selected members in a population. I also think if someone picked up a newspaper and read that the rate of seropositivity is increasing in their community and they had reason to think they might be at risk, and I think many people who are at risk tend to know what kind of behaviors put them at risk, that more of these people might go in, get a test for HIV and if they learned that they were seropositive they might be able to alter their behavior so they would be less likely to infect loved ones and to infect others and the march of therapy is telling us now, that there’s reason to think that it might be a good idea to start certain kinds of therapeutic regiments early. Well, that means you have to know a little bit earlier. So there can be some very positive aspects to the individual for going in and voluntarily asking for a test and asking to learn the results

HEFFNER: Of course, it’s interesting to me that you talk about the positive aspects to this. Earlier today, when my wife came home from temple, she had, interestingly enough, heard you, Dr. Bateson, at this morning’s services. And she said she was so impressed with your statement that fear is not enough, that it hasn’t worked in the first place and isn’t likely to work with young people and that they needed some positive vision of the future to take the steps that we know they must take if we are to come out of this. She said that you’d quoted Deuteronomy, God said through Moses to the Jews before the Promised Land, “I put before you the choice of life, death, blessings and curses,” and I’ll be doggoned if I can see that as something quite as positive as you do. It is the fear of the curses, it is the fear of death, isn’t it, that leads us to make the choices that lead to life and to blessing. Won’t we have to scare people?

BATESON: I think when we scare people the effect is that they try not to pay attention. We stimulate fright, and that that’s what’s happening with AIDS. All across the country we know the disease continues, we know the spread of the disease continues and people are saying, “I don’t want to talk about it anymore. I’m bored. I’ve heard too much about AIDS.” And this is an understandable reaction because frankly, it’s a downer. Now, it seems to me that what we have to do is we have to get to a point where individuals adopt behavioral patters, including their sexual behavior, in which their own autonomy is enhanced, consciousness is enhanced, they’re making their own choices, and they’re making choices for health themselves and for the health of their loved ones. This is part of a total package. You know we don’t eat to prevent starvation and that’s the way I would like to see safer sex integrated into our lives. We don’t wear shoes in the streets to prevent walking on broken glass. We wear shoes because we’ve learned that you wear shoes. How do you use condoms with new sex partners? The same way as something that someone who is thoughtful and proud and aware of what they’re doing in their life chooses to do and frankly offer me a partner who doesn’t feel that way and I say this is somebody dumb and careless that I don’t want anything to do with.

HEFFNER: Perhaps because you’re scared of that, frightened by that, that partner. I guess I belong to a generation that still believes that fear is the spur. And if we take that portion of the population where I believe, statistically, we’ve learned that AIDS has been on the decline, the homosexual population, was that not out of the fear that we engendered by the first stories of the spread of AIDS among the homosexual population?

BATESON: Yes, but. Which is to say as time goes on, there are now some studies that show that within the homosexual population those who are most successful in maintaining behavior change are the ones who are scared but not so scared. Those who are most fatalistic, those who think they’re likely to get the disease, those who feel most threatened have great difficulty maintaining behavior change. So that theg group that has been most hit by fear is not the group that is making the greatest change. Now you look at the next group. That group has some real fear. But its behavior is also affected by very healthy and positive trends in the gay community, the kind of social solidarity that’s been coming out, the sense of members of the gay community caring for each other, providing leadership, in fact being the heroes in many ways of the epidemic. Now, if you contrast that with the IV drug using community where people are scared and they’re aware but you don’t have that kind of community feeling. You’re getting less drug use, because people are not free when they’re addicted to IV drugs but IV drug users do have the option of using condoms to protect their partners after all, so that there are other forms … or bleach bottles … there are forms of behavior change that help in the IV drug community other than cold turkey. And basically the difference is that there is a positive vision of mutual community support abroad in the gay community that doesn’t seem to have taken hold in the IV drug using community. And you have to give some of the credit for the change to the positive factors, the community support as well as to fear.

HEFFNER: Do you think that as you look at our nation again the … reading Thinking AIDS and the social response to the biological threat, I mean pressed with the many, many pitfalls, in terms of our larger behaviors, our larger attitudes, our feelings about others the benevolence that seems so absent in our lives. And I wonder what changing social pattern will there be in American life. I wanted to get at this when we spoke last. As futurists, what do you see happening now in the next decade, what will be the impact upon the way we Americans live and I’m talking about this country.

GOLDSBY Well, yes. I certainly think we touched on one before when Catherine was pointing out the situation with respect to IV drug users. This is a problem, the AIDS epidemic is making it very clear to us that we’re going to have to address and in some way move toward some kind of more acceptable solution to the problem of IV drug use because this is certainly one of the major conduits, can be one of the major conduits of the AIDS virus into many other communities here in the United States.

HEFFNER: But do you think that the response will come out of malevolence or benevolence?

GOLDSBY I think …

HEFFNER: Will we strike them dead or are we going to help?

GOLDSBY I think if the response could be governed primarily by a consideration of what’s likely to work and what’s likely to be effective, as opposed to what’s likely to be punitive, then I think the response will be positive and I think we’ll find that we make some headway. I think there are all kinds of moralistic barriers to taking some of the kinds of actions that would make IV drug use perhaps less of a problem to the society even though it’s an extraordinary problem to the individual. I think more movement toward decriminalization for committed users would certainly help to some extent it would remove some of the incentive for getting more people hooked so you could sell more.

HEFFNER: But I noticed the way you avoided the question.

GOLDSBY I don’t think I’m avoiding the question as much as sort of being hesitant to try and predict the future. I think there are a variety of possible outcomes, I think the kind of outcome we’ll get will depend upon what we do. If we tackle the IV drug use problem head on, and rationally, then I think the outcome 10 years from now will be good, it will be positive. I think if we continue to try and attack it primarily through punitive channels we’ll continue to live the history we’ve lived for the past 50, 60 years with this problem.

HEFFNER: Then I suppose I should turn to our anthropologist and ask what the history of human society indicates to us of the likelihoods in this area. I know what you both plead for here and it’s a very, very touching plea. You ask that the better angels of our nature prevail for very practical reasons too, but in the long run, anthropologically – if I may say that – historically, what can we expect?

BATESON: I think there are a great many issues in our society that we try to address only through the negative side, only through fear without exploring incentives and positive motivations to address the same issues. And I think that that is one of the directions that we must move whether we’re dealing with crime in the streets, whether we’re dealing with nuclear deterrence, deterrence is a nice idea but you have to have a vision of where you’re going, what kind of world you’re trying to build. It is one of the great scandals of this nation that addiction treatment programs in city after city are full up and people who want to get off drugs, can’t get help in doing that. We’re spending the money on attempting to interdict the importation of drugs instead of spending the money reinforcing people who want to make the positive choice of getting off drugs. What is it that makes us choose the negative measure, to choose fear and punishment instead of offering alternatives and getting people off the drugs and facing the fact that there are young people growing up who have no positive vision of what they could do with their lives. And I think, I mean, I would like to see this is a society in which we could say that no one chooses drug addiction because they don’t see a different, an alternative, a better way of living their life.

HEFFNER: When we’re bitten by poisonous insects or snakes, we know, God knows I don’t think I could do it, but we know the answer is to take out a knife and cut out the poison. If we are not succeeding in dealing with this problem, the only way you believe we can really be successful, benevolently, wisely, decently, then must the alternative be draconian measures that don’t run along the lines of the kind of society we’d want to see, but we will be so impacted by the increasing epidemic that something else has to go – not the benevolence that you embrace or would have us embrace just out of desperation.

BATESON: Do you want to do this one?

GOLDSBY Well, I think in some circumstances the measures have, the measures of draco have already been put in place and they’re not working. We got people up in helicopters, we’ve got people running around in boats through the gulf and that sort of thing and the stuff keeps coming in. I’m just not sure I think it’ll work. But, I just want to play the role of optimist here and in fact I want to play the role of someone who cites already some positive changes that have taken place in our society as a consequence of this hideous plague.

HEFFNER: Please, tell me. I’m waiting for that.

GOLDSBY It’s now possible to get drugs approved, beneficial drugs approved through the FDA more rapidly than it was before this epidemic struck because people realized that this was the kind of peril that simply didn’t allow for the kind of bureaucratic kind of foot dragging that had been so prevalent in the past, that’s been speeded up. This is the kind of epidemic that’s made us aware of the fact that private concerns, the government, and the society all have to work together in something like developing vaccines. That we’re going to have to put aside some of our, what seems to be almost our naturally litigious nature and not sue people all the time who are trying to develop certain kinds of vaccination strategies and that sort of thing, to give some kind of clear zone in which people can do research and actually develop these vaccines. So I think there are certain things in terms of the way the medical research establishment has been set up that have been changed by this epidemic and have been changed very rapidly. As you point out, it’s been with us now, we’ve known of its presence now for only seven years and already we see these changes coming about.

HEFFNER: You see, it’s the glass that’s half full, and that glass that’s have empty. You say “it’s seven years” and I say, my God, seven years of fear.

GOLDSBY It’s a glass that’s half full and filling, I think.

HEFFNER: Do you agree?

BATESON: With the notion that there are already some benefits in our society as a result of the epidemic, yes. They don’t balance off the huge costs, and the pain, and the suffering so far. But the opportunity is there to fill the glass further. The challenge is there to make our response to the epidemic of AIDS or drugs stimulate us to make this a better society.

HEFFNER: You see, I wanted to be, by being so pessimistic, to elicit this from you because I need that hope and I’m glad you’ve provided it, and I’m glad that in Thinking AIDS this extraordinary readable book that delineates for us what the situation is now and what the possibilities are that you, Mary Catherine Bateson, and you, Mr. Richard Goldsby, have made it possible for youngsters perhaps to know a little bit more about this epidemic. Thank you for joining me today.

GOLDSBY Thank you.

BATESON: Thank you.

HEFFNER: And thanks, too, to you in the audience. I hope you’ll join us again next time. And if you care to share your thoughts about today’s program, today’s topic, and guests, please write THE OPEN MIND, P. O. Box 7977, FDR Station, New York, New York 10150. For transcripts send $2.00 in check or money order. Meanwhile, as an old friend used to say, “Good night and good luck.”

Continuing production of this series has generously been made possible by grants from: The Rosalind P. Walter Foundation; The M. Weiner Foundation of New Jersey; The Mediators and Richard and Gloria Manney; Mr. Lawrence A. Wien; andThe New York Times Company Foundation.