First, let me congratulate Prime Minister Douglas, not only on his recent victory at the polls , but for having been the initiator of this high-level meeting to discuss the issue of stigma and discrimination as it relates to the situation in the Caribbean. As the person with the responsibility for the Health portfolio in CARICOM, he has been an indefatigable champion of the need for the Region as whole to seek solutions to our major health problems and not be party to a simple repetition of the litany of them which we know so well.
I wish to thank the Hon. Gareth Thomas , not only for his presence and his stimulating presentation last night, but also for the support of his government. I am grateful to Minister Ramsammy of Guyana who shared with me an excellent address he gave recently on the subject of stigma and discrimination
When I was asked by the Secretary General of the United Nations and accepted to be his Special Envoy for HIV/AIDS for the Caribbean, I thought long and hard about the things I could reasonably attempt to do. I thought I could promote the basics of treatment and care for all those with HIV/AIDS. I felt I could lend my voice to articulating the benefits of partnerships and as one of the original signatories I am pleased to see the Pan Caribbean Partnership (PANCAP) moving firmly along the path we anticipated for it. I hoped to stimulate the interest of the Caribbean business sector in the problem of HIV/AIDS and as you will see, I am still optimistic at seeing movement in that direction.
I promised myself to try to understand the nature of the stigma and discrimination against HIV/AIDS and speak out at every opportunity about it and what might be done to curb it. This last commitment of mine has its genesis in my personal philosophy and credo. In my acceptance address on the day I was elected as Director of the Pan American Health Organization (PAHO) 10 years ago, I said the following:
“I have for a long time been gripped by a vision of the world in which there is no “otherness” in health. We may accept differences in physical characteristics-we may accept differences in ideologies-but in a real sense, in the case of health there should be no “others”, because we are indeed one, bound together by ties that go beyond our biology”.
Sigma and the consequent discrimination are based essentially on the creation of others. The otherness is characterized in many ways, but essentially it defines a characteristic that is undesirable and not possessed by the majority which arrogantly assumes unto itself the definition of normality as the basis for the stigmatization of the others. We all know that stigma in health is not new and every child in my day who went to Sunday School learned about the biblical injunctions against the unclean who came in many forms. We knew about the characteristics of the lepers and what was done to them.
We have seen the stigmatization of persons in times of epidemics lead to persecution of those thought to be responsible for the outbreak. In the time of the Black Death the sect of Flagellants persecuted the Jews as being responsible for it. In recent times the stigma of tuberculosis was a very real phenomenon, but there is a difference between the stigma of persons suffering from tuberculosis or even persons with obvious physical congenital abnormalities and that directed against persons who are HIV positive. The former are thought to be unlucky and there was no volition on their part.
Persons who are HIV positive are thought to have engaged of their own free will in some reprehensible act that caused them to be infected. But all of this is well known to this audience and I wish this morning to go beyond the sociology of stigma and discrimination and its societal origins and discuss what we can and should do about it here in the Caribbean.
My first concern is with the lack of good data and reliable information. Most of what I have been able to glean is based on anecdotes or limited surveys, and it is self evident that it is impossible to determine whether progress is being made in any social area without the basic information. I will be told of course that we know the problem exists and as such we must deal with it and I agree. But that does not absolve a society like ours that prides itself on the sophistication of its approach to health problems from acquiring basic data.
In this regard I would recommend the framework for research on Stigma and discrimination in the excellent PAHO publication; “Understanding and responding to HIV/AIDS stigma and discrimination in the health sector” that sets out an excellent framework for the collection of data in this area that would allow for comparative analyses and documentation of change. It is also clear that the nature and depth of stigma and discrimination bear the color of their cultural environment and we cannot easily translate findings from other cultures to this environment.
I have a thesis that there are basically two approaches to reduction of stigma and discrimination that are worth considering. The first is how to reduce the level of stigma and consequent discrimination against Persons Living with HIV/AIDS (PLWHA) and those perceived or suspected of having a life-style that increases their vulnerability. The second is to accept that stigma and discrimination currently exist and find measures to protect persons against them. I suppose this is the approach of a health worker. How do you prevent the disease and how do you treat it when it occurs? Ideally the former is preferable, but we do not live in the ideal world.
The first approach has to have its roots in the behavior change that comes through education in the widest sense and I have thought of four ways that are feasible here. First is to educate children from the earliest age about the basics of human rights and the importance of appreciating but not devaluing differences. Young children normally do not note differences and their attitudes become distorted and warped by the adults in the wider society. I believe that this natural tendency not to discriminate can be reinforced by instruction and there is a real possibility that children can influence the society in positive ways as we have seen in the case of tobacco use. I would be less emphatic about stigma, but I am emphatic that discrimination is learned behavior and therefore can be un-learned, or conversely, tolerance can be learned.
Second, is to provide much more information to the public about HIV/AIDS. I know that a great deal is already being done and I know of surveys showing the high level of knowledge in the society about the disease. But we all know that there is often a chasm between knowledge and the decision to act. Here is where I suggest that Caribbean business has an important role to play.
The manufacturers of any successful product know how to market it. We need to incorporate these talents that are the life blood of successful business in the effort to educate the general public about the problem and the danger it poses to society. I know of efforts to use this approach in at least one country, but it is not intense or region-wide.
Here let me congratulate the UK Department for International Development in the Caribbean for its seminal work in supporting a study to design a private sector component of the Regional HIV/AIDS support program. Some of the preliminary data which they shared with me showed quite clearly that there was a high level of basic information but action in many cases was hindered by the fear of stigma and discrimination.
In spite of the obvious laudable concern and apparent willingness to be helpful on the part of the private sector, I could find no evidence of their use of business skills as such supporting the national programs. It is known at an intellectual level that stigma makes the public health approach to control of HIV difficult, but I am not convinced that the case has been put sufficiently strongly that self interest should induce a society to change.
I would of course include the role of the media here, both because they constitute a mega business and also because of their unique capacity to inform. My proposal is a structured approach for support to the captains of industry and the gatekeepers in the media.
Third is that influential persons in the society must ventilate more the problem posed by stigma and discrimination. Here I would point to our political leaders and I mean all of them at all levels of the political hierarchy. My appreciation is that many leaders here are reluctant to be vocal about the issue of stigma because of the perception that they will be thought of as condoning the life-style that makes for vulnerability.
Here the answer may lie in the regional approach. Individuals in one country may be less likely to be vilified if there was agreement that there be a region-wide concerted effort to ventilate the nature of stigma and discrimination and the danger they present. I know that several groups of parliamentarians have been briefed about the issue, but I have heard little echo of the message.
The final aspect of the education thrust involves the affective value of embracing persons living with HIV/AIDS. The Caribbean Association of PLWHA is strong and growing, but it would be ideal if it was recognized more publicly, embraced and supported by the leaders in our society and here I do not refer only to the political leaders. I refer also to leaders in the private sector, the groups in civil society and particularly the Church.
Certainly the Christian religion, and I would suspect all religions, has as part of its basic belief systems tolerance for and the incorporation of the marginalized. George Carey a former Archbishop of Canterbury dealt with HIV/AIDS when he preached his farewell sermon two years ago. He referred to the need to eliminate certain boundaries in dealing with persons with HIV/AIDS. He referred to Jesus Christ as a “boundary breaker” and said “He had the habit of mingling with outcasts and strangers, lepers and tax collectors, women of dubious reputation and men who sat begging at the city gates”.
I have found that the second aspect of the protection of those vulnerable to stigma and discrimination is perhaps more difficult, but allow me to frame a response at two levels-the individual and the societal.
At the individual level, the response has to be through the formation of partnerships and I would stress here again the need to support the organizations of persons who have agreed to be public about their HIV status and counsel others about the reality of living with HIV/AIDS. History is full of examples of the benefits of the group as a buffer against the slings and arrows that are directed against the individual members. The group supports its individual members and helps them to cope. Here let me repeat a proposal made to me yesterday by Dr. Barbara Gloudon that there must be a directory of focal points for PLWHA in every country.
The essence of the response has to be a societal one and several persons have pointed out the challenges the public sector faces. And we have several paradoxes here. Most if not all Caribbean governments have the concept of non-discrimination enshrined in their constitutions and yet laws persist that make it possible to discriminate against persons because of sexual orientation.
It is difficult to justify that there should not be discrimination on the basis of race, but on the basis of life-style. However, here one has to appreciate the political arithmetic of discrimination against HIV/AIDS. No political leader will go very far beyond what is perceived as being politically feasible. None will commit hari kari. When dealing with thorny issues, the astute political leaders sense the cresting of the wave of public opinion which they can ride.
If certain actions are held by the majority of the population in our democratic societies to be unacceptable, it will call for a very bold politician to attempt to legislate such actions. Thus I am not sanguine about the value of railing against the political leaders for not going against strong societal currents. The obvious answer is to change the strength of the societal current such that there is a possibility of successful legislative change.
But still there are areas in which progress can be made without a societal convulsion. We have the example of the Bahamas where the Employment Act of 2001 expressly names HIV/AIDS as one of the characteristics for which a person cannot be denied employment. In addition there can be no testing as a pre-requisite for employment. I have been told that it is possible to have labor laws that prohibit discrimination against HIV/AIDS as long as it is linked to discrimination against disease in general. I ask the question whether such legislation cannot find its way into other countries and I trust the PANCAP initiative at model legislation will address this issue.
I confess the issue in the area of societal response that gives me the greatest difficulty is the manner in which the state discharges its responsibility to protect the vulnerable. All of our states subscribe to the various declarations of the rights of the individuals. One of these, the “American Declaration of the Rights and Duties of Man” specifically refers to the right “to the preservation of his health through the sanitary and social measures related to food, housing and medical care”, and the only limitation is the availability of public and community resources. How can one accept such a right which I take to be justifiable and be against the distribution of condoms in prisons? There must be few clearer examples of a sanitary measure to preserve health.
In my discussion with the eminent legal scholar Sir Roy Marshall, Vice-Chancellor Emeritus of the University of the West Indies, he points out that exercise of this right by making condoms available leads implicitly to aiding and abetting the criminal act of buggery. I would hope that the legal brains among us will find a way to address the practicalities of the need to make the condoms available perhaps from the point of view of the primacy of protecting the public’s health.
The state’s responsibility to protect the innocent has to be extended to appropriate sanctions against those who break the law by acting against innocent persons on suspicion of one or other life style. I believe that it is crucial that the judiciary be clear on its commitment to this basic principle.
Mr. Chairman, I have given you my thoughts about some actions that go beyond the declarative to address the problem of stigma and discrimination. Perhaps many of these have been already put forward in your technical meeting. I believe they are feasible and there are the established institutions and agencies in the Caribbean that can move on these proposals if they are put in specific terms.
I hope that the champions here will define the necessary modalities for doing this. All successful champions reach preeminence through basic talent, dedication and the support of a loyal cast of believers. The large and enthusiastic gathering of believers here gives me hope for the victory of the champions in the struggle against stigma and discrimination against HIV/AIDS and a little less “otherness” in our world. .
I thank you.
