INTRODUCTION

Recently I struck up a conversation with my son about HIV/AIDS. I asked him what he knows about it. He said: you don't get it sitting next to someone, touching someone or kissing someone and you can only get it through blood exchange and sexual contact. He said needles must be clean, blood must be scanned for AIDS and you must practice safe sex. He is eleven. I don't think he really knows what is sexual contact let alone safe sex, but it was a good start.

I asked if kids should avoid someone with AIDS and he said, "No, I won't but I understand why some do. They don't really know what it is." I then asked if he would play with kids with AIDS. He said, "Yes, I am not afraid of playing with a kid who has AIDS unless he gets a cut. I'll play with him and I'll be careful." He went on to say, "These are my guidelines for friendship but quite frankly none of my friends have it, at least I don't think they do."

His words touched me. He understands that we all need to learn about the illness as well as to prevent its transmission. He is willing to have kids with AIDS as his friends and I am beginning to learn more and more from my son about the attitudes of his generation. I hope the younger and future generations will be far more knowledgeable and accepting of people living with HIV/AIDS than ours have been.

The last decade witnessed great medical advancements and breakthroughs in the treatment of HIV/AIDS. Such achievements have slowed down the deterioration of the health of people living with HIV/AIDS and have extended their life spans. However, one's well being does not necessarily enhance proportionately with the lengthening of life. Health is but one aspect of life and what is life without the right and opportunity to participate in civil society and to become fulfilled? What is living if one's life is spent in fear and alienation?

STIGMATISATION HINDERS PREVENTION AND ACCEPTANCE

People living with HIV/AIDS often face prejudice and stigmatisation. This is a worldwide phenomenon and cuts across lines of gender, sexual orientation, race and ethnicity. The stigma attached to HIV/AIDS has arisen from a number of factors. HIV/AIDS have long been associated with socially marginalized groups, such as gay men, sex workers and intravenous drug users, and socially disapproved conduct, such as reckless sexual behaviour and promiscuity.

Two decades since HIV/AIDS were first diagnosed, we now know for certain that people living with HIV/AIDS are not necessarily intravenous drug abusers or practitioners of unsafe sex. They may have become infected through sexual intercourse with only one partner, such as their spouse or cohabitee. They may not have been engaged in any way in "socially disapproved" behaviour.

The stigma associated with the epidemic reflects the underlying interests and values in society. It affects not only the societal response to people living with HIV/AIDS but also deters people from taking HIV tests and seeking treatment.

The humiliation that comes with HIV/AIDS often means that those affected are reluctant to tell their families and friends of their HIV/AIDS status; sometimes disclosure leads to rejection by their families. Stigmatisation of people living with HIV/AIDS can affect the availability of family support; indeed, even the carers may themselves be stigmatised and discriminated against.

In normal circumstances, the family provides support and care to patients. Discharging of such responsibilities is never an easy task and can be exhausting. Where illnesses do not carry any moral or social condemnation, a family carer can share the heavy psychological burden with friends and relatives. However, when it comes to HIV/AIDS, many carers can only perform their duties in silence, lest the revelation should invite gossip and contempt.

Until a vaccine or a cure is found, the prevention of HIV/AIDS will still rely, to a large extent, on social measures, such as teaching people how to practice safe sex and not to share needles. An environment in which those living with HIV/AIDS fear harassment and stigmatisation will not encourage those at risk to come forward, or those who are not to provide support and care. Such an environment will drive the epidemic and those affected underground, frustrating detection and prevention measures.

LEANING TO FOSTER ACCEPTANCE

It is the removal of ignorance that will reduce discrimination and stigmatisation and create acceptance. The knowledge of prevention will help us to achieve our health objectives, and we also need to understand how public attitudes are formed so as to make our educational programmes more effective.

According to a Baseline Survey on Public Attitudes towards Persons with a Disability published by the Equal Opportunities Commission (EOC) in 1998, we note that "Respondents perceive safety considerations (93%) to be the main reason for colleagues' non-acceptance of persons with HIV/AIDS". Of these considerations, 'potential threat of being infected' is mostly mentioned followed by 'non-acceptance by others'. 'Peer pressure' is regarded as relatively important here as there might be negative association with people living with HIV/AIDS.

The survey also revealed that respondents perceive safety considerations and knowledge/communication problems (17%) as some of the key reasons why the average person is unwilling to befriend people living with HIV/AIDS.

Information must be promulgated widely and in particular target the young, the women in the family and the healthy as well as those at risk. Cumulatively, 81% of reported HIV infections in Hong Kong involved sexual transmission and of this 70% involved heterosexuals transmission. Behavioural surveillance data obtained for 1998 and 1999 indicated that about 13–14% of adult men in Hong Kong had visited commercial sex workers. Heterosexual transmission through one's regular partner, especially in the family context, needs special attention. Typically, the husband gets infected through unprotected paid sexual contact and then passes the virus onto his wife. Often the husband avoids taking the test and the wife may not know about the risk or how to deal with it. Here, it is culturally difficult for a wife to discuss these issues with the husband, and many women do not feel they have the power to assert their needs in sexual relationships.

The data for Hong Kong indicate a rapidly increasing number of infections through heterosexual transmission for those aged 20–39. These are also the biologically productive years for women. It is therefore vitally important that women are empowered with information and knowledge of HIV/AIDS and that support is made widely available to them. Knowledge on the part of women in the family can help prevent transmission between spouses as well as from mother to child. Women in the family can also play a key role in multiplying the effect of knowledge and in teaching the young.

CREATING SUPPORTIVE ENVIRONMENT THROUGH LEGISLATION

Creation of a supportive and a more accepting environment for those living with HIV/AIDS involves many facets: public education, legislation, administrative measures and the judicial process. I will now focus on how the law contributes to the prevention of discrimination against people living with HIV/AIDS, thus helping to promote a more open and accepting environment for them.

Hong Kong's Disability Discrimination Ordinance has only been in effect since 1996. Often people ask if legislation can change attitudes. No attitude will change overnight but what the law does is to provide incentives for people to change their behaviour. Let me give you some examples. After legislation against jaywalking was passed, people quickly learned to stop jay walking because they knew they would be fined. Similarly, after a law against public spitting was passed, people stopped spitting because they knew they would be fined. In each case, the direct and immediate consequence of the law was to make people change their behaviour. The indirect and more lasting effect is that we now understand the public safety and public health reasons behind these measures. The law itself thus becomes an agent of change for behaviour and attitudes as well as a tool for learning.

The law protects people living with HIV/AIDS by ensuring that they are not subjected to discrimination where education and employment are concerned. It also prescribes that services and facilities are to be made available to them. The International Covenants on Civil and Political Rights and on Economic, Social and Cultural Rights guarantee all people the right to participate in different spheres of life. But these covenants are not self-implementing. They can be effective only when implemented through domestic legislation.

The law prescribes that decisions by employers and service providers cannot be made arbitrarily. No decision to deny a person of any service, whether it be medical care, insurance, education, employment, accommodation or anything else, can be made without justification. The process of learning begins with asking questions which are objective and answering them in a fair way. The law in requiring a particular kind of methodology to arrive at a fair decision is changing attitudes.

The Disability Discrimination Ordinance functions as a social contract between individuals in a community to respect each other, to be non-arbitrary in decision-making, to guarantee access to rights and to allow integration of individuals within the community. This is the process to induce acceptance and achieve inclusion while learning at the same time.

Having an anti-discrimination law is, of course, not enough. It must be capable of being used for the social objective intended. It cannot be used in a way that will cause further harm to the aggrieved person. Access to the law at the expense of disclosure of the identity of the aggrieved person may result in winning in a court of law but losing in the court of bigoted public opinion. Privacy is a major concern and unnecessary disclosure of identity may result in further alienation of the aggrieved person. Disclosure of identity is particularly sensitive for people living with HIV/AIDS. Thus, the use of the law in this type of situation requires a careful use of options that will protect the privacy of the aggrieved person and not intensify hostility against him/her.

The Kowloon Bay incident in Hong Kong involving a multi-purpose health clinic, which provides HIV/AIDS treatment, is a case in point. Both the carers and the HIV/AIDS patients at the Kowloon Bay Health Centre were subjected to harassment and vilification. Access to the law requiring named complainants initially resulted in no complainants coming forward for fear of further harassment and alienation. Representative actions in the name of the service provider or the EOC and orders from court to preserve the confidentiality of the complainants must necessarily be considered and offered as alternatives to named actions. Every effort must be made to reduce any harm attendant to seeking legal redress. The legal process would be ridiculous otherwise.

CULTIVATING ACCEPTANCE

Because the purpose of the law is to promote social inclusion in the community, it is extremely important to ensure that the process for resolving disputes must itself be a tool for learning and allows the parties themselves to establish a workable solution. In the process of conciliation, the participants formulate their own agreement and make an emotional investment in its success.

The EOC's statistics show that out of every 3 conciliation cases attempted, 2 have been resolved successfully. The range of solutions has included apologies, change of procedure regarding recruitment and complaint handling, training, reinstatement, donation to charities and damages. In many of these cases, the parties have learned through the conciliation process and have opted for a change in culture.

The Kowloon Bay incident highlighted the importance of community planning. To enhance the spirit of cohesiveness in a community and to discourage any alienation, a number of principles must be established. First, that community integration should be adopted by government as the planning policy for health clinics. Second, community infrastructure and facilities, such as roads and transport, must be adequate and available to all and in particular to the staff, users and visitors of any health clinic. Third, to reduce the 'not in my backyard' syndrome, objective benchmarks on siting decisions should be established.

Last but not least, the community consultation must be open and scientific and relevant information must be provided. One of the very damaging features of the Kowloon Bay incident was that the government consultation process during the planning stage of the health clinic was badly handled. There were complaints regarding insufficient consultation as well as inadequate and unclear information being provided. The change in the clinic's scope of services to include HIV/AIDS treatment was an obvious factor adding to the complication. Local residents' sense of betrayal contributed to a hardening of their attitudes towards the health clinic. In the EOC's investigation report on Kowloon Bay, we observed that the protests were initially directed against the Government for inadequate consultation, followed by active blocking of the construction site in the second phase, and harassment of the health centre staff and users in the third phase. The targets and the subject matter of the protests shifted from time to time.

What is also extremely important is to let the aggrieved persons know that the public is behind them and would not tolerate discriminatory behaviour. Public opinion and the use of community leaders to bridge gaps are significant aspects of nurturing good relations and establishing consensus.

The Hong Kong Government has recently published a consultation document on an Urban Renewal Strategy. We hope that the lessons learned from the Kowloon Bay incident will be reflected in the final strategy.

CONCLUSION

As I have said earlier, anti-discrimination laws alone are not sufficient to meet the intended social objective behind these laws. Other legislative measures are required and these will go well beyond anti-discrimination laws. For instance, we need to consider removing solicitation by sex workers as an offence so that they feel safe in seeking advice and help over a range of problems without fearing they will fall foul of the law. We also need to consider a needle exchange programme to reduce the risk of infection through sharing needles. Such a programme will require a change in the law, which currently makes it an offence if a person is in possession of even the miniscule quantity of drugs found in used needles. Both these measures are controversial but the community must consider them from the perspective of harm reduction and prevention of spread of the HIV/AIDS epidemic.

I have outlined the legal framework that helps to provide an environment for learning, prevention and acceptance. Clearly this is but one aspect. We need a multi-faceted approach to encourage acceptance and to facilitate integration. All modalities adopted must themselves be a process for learning, participation and inclusion. It is particularly important that we start the learning process with the young. The EOC has promulgated the Code of Practice on Education under the Disability Discrimination Ordinance which sets out the guidelines for integrated education to be provided to children with disabilities and these include children living with HIV/AIDS. In the end it is knowledge that will remove ignorance and bigotry. And it is knowledge that will conquer the fear of HIV/AIDS and the fear of association with people living with these conditions.

End