Stigma and Discrimination First Michael J Kelly Lecture

Stigma and Discrimination First Michael J. Kelly Lecture on HIV/AIDS Dublin, World AIDS Day 2006

White Paper on Irish Aid We give aid because it is right that we help those in greatest need

I strongly believe our aid programme is a practical expression of the values that help define what it means to be Irish at the beginning of the 21 st century.

As in Ireland, people everywhere wish to provide for their families and children and to have access to education and health services They want to live with dignity and to contribute to shaping their own futures

We have prioritised the fight against HIV as fundamental to poverty and vulnerability reduction

We are committed to increasing our support for programmes that address the needs of orphans and vulnerable children We will allocate up to 20% of the additional resources for HIV and other communicable diseases to support vulnerable children

AIDS and People

What HIV and AIDS Do to People • They remove the inherent dignity of people • They deny people a fair chance in life • They cut happiness and hope from the lives of children • They deny our common humanity

The Experience of those with HIV or AIDS • • • Fear and anxiety Bodily pain and physical incapacity Isolation and rejection Loneliness and depression Anger and guilt Stigma and discrimination

Stigma and Discrimination

The Three Epidemics • The silent, developmental epidemic of HIV infection • The visible, medical epidemic of AIDS • The social epidemic of stigma and discrimination

What is Stigma? • Making negative prejudiced judgements on the basis of perceived differences between individuals • The person is different in some way that calls into question deep-felt personal and community-held values, prejudices and taboos • Characterized by rejection, denial, discrediting, disregarding, underrating and social distance

Self-Stigma • Self-stigma = the disabling feeling of shame, self-doubt, guilt, and self-blame that a person living with HIV may experience • Intense feelings of lowered self-esteem, inferiority and utter helplessness • “I’m getting what I deserve” • Self-stigma may also include a high level of fear that leads to denial and secrecy

“I so wish I could go there, stand up and say I have HIV — but the problem is other people” HIV does not stigmatise or discriminate People do

Features of Stigma • It is irrational • There are many layers of stigma • It separates “them” from “us” — it “otherises” • It is universal • It reduces the humanity of the one who stigmatises

The Many Layers of Stigma and Discrimination GENDER Economic Status HIV Status Sexual Orientation Social Class Ethnic Background RELIGION

AIDS Belongs to All of Us Any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls: it tolls for thee.

Settings for Stigma and Discrimination • They occur everywhere – In the home – In the community – At work – In health and education settings – In social and religious gatherings – In the media

The Experience of Six Nairobi Women • What they did: each remained faithful to their husbands in marriage but became HIV infected because their husbands were not faithful • Their reward: disowned, shouted at, beaten, chased out of house and home with their children and without any belongings

What Stigma Leads To • Silence and denial regarding HIV status • Inadequate take-up of testing and counselling services • Fewer people tested • People not knowing their HIV status • Fewer people treated • Fewer people receiving the support they need • Ideal situation for the continued spread of HIV

Many people suffering from AIDS are not killed by the disease itself They are killed by the stigma and discrimination surrounding everybody who has HIV or AIDS (Nelson Mandela)

Stigma Leads to Death • Less than 10% of mothers with HIV receive treatment to prevent transmission of the virus to their infants v. Their infants will almost certainly die v. They may die themselves v. Their surviving children become orphans • Partly because services are not sufficient • But mostly because they fear the likely stigma and will not come forward

Stigma Leads to Murder • In South Africa, Gugu Dlamini was beaten to death by her neighbours because she had spoken openly on radio about having HIV • In Uganda, a man murdered his lover when she told him she was HIV positive • In Kenya, a man pitch-forked his 15 year old HIV nephew to death, while villagers stood by

Stigma Dismantles the Basis of our Common Humanity • A person is a person through other persons • To live is to be connected • We are incomplete without the other • The solitary isolated human being is a contradiction in terms • Stigma cuts these bonds that link the infected person to others

What Medicine Can You Give Us for Stigma? • Vicky Bam, happily married with two lovely children • One child died of AIDS and both parents were found to be HIV infected • Massive stigmatisation • Husband committed suicide • Vicky, now on ARVs, pleads: “With ARVs we can cope with AIDS, but what medicine can you give us to cope with stigma? ”

Stigma and Moralising • Mistaken Identities v. HIV = Illicit sex or drug use v. Illicit v. Sin sex or drug use = Sin = Punishment

Need for More Humane Religious Perspectives • Sex is good and wonderful • Stigma is the real sin • Catastrophes are not punishment for sin

Stigma and Women • All suffer, but women more than men • Women blamed for bringing HIV into the family • Women economically dependent on men • Women lack property rights, ownership of assets, access to credit • Unequal gender power relationships, especially sexual

Stigma and Global Policies • Treating AIDS as exceptional • Requiring informed consent for HIV testing • Focusing on the responsibility of the individual to change personal behaviour • Absence of focus on the underdeveloped environment that promotes HIV transmission • “The microbe is nothing, the terrain is everything”

The Way Forward

Stigma Can be Overcome • We have seen changes in personal and public attitudes • The transformation of South Africa’s apartheid society in less than twenty years • Dramatic reduction in our society of stigmatisation of unmarried mothers • Ongoing more human rights oriented changes in relation to sexual orientation

Irish Initiatives against Stigma and Discrimination • Stigma seriously compromises quality of life of those living with HIV in Ireland, as elsewhere • National Campaign to Combat HIV Stigma and Discrimination, launched today and running until this time next year • Ireland’s support for the Health and Development Networks stigma project and e-forums • Discussions and publications saving lives

The Road Ahead • Demystify HIV and AIDS • Universal access to ARVs by those in need • Greater emphasis on addressing poverty and joblessness • Massive stress on human rights and justice, especially for women and persons living with HIV or AIDS • Greater involvement of persons living with HIV or AIDS (GIPA)

Guiding Principle • Full and absolute adherence to the first principle of the Universal Declaration of Human Rights: All human beings are born free and equal in dignity and rights • Affirms the full equality of all, regardless of HIV status, sexual orientation, ethnicity, class, or nationality • Affirms the full equality of women and men

I want people to understand about AIDS – to be careful and respect AIDS– you can't get AIDS if you touch, hug, kiss, hold hands with someone who is infected. Care for us and accept us – we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else – don't be afraid of us – we are all the same! Nkosi Johnson, aged 12, died of AIDS in 2001

Thank you