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.