Life as a Korean AIDS Patient

June 23rd, 2008 · Society · 5 comments

Back in November news organization PRESSian published this article about a report being put together on how Korean AIDS patients live and die.

Every death leaves its sufferers in pain, but one makes them ashamed. This form of death holds meaning for how our society thinks about its victims. Even before the biological death, the exclusion from society is another kind of death. Every death comes from a different situation, but it is clear that this problem in how Korean society looks at death is not going away.

A plan has been formed to record all the deaths since 2003, when “Increasing Human Rights” (인권오름) was published by the SARANGBANG Group for Human Rights (인권운동사랑방), until recently — those which have been increasingly forgotten, but which the dead must remember. The first entry in this plan, titled “Remember the Dead” (죽음을 기억하라), will be introduced here.

In early February of 2007, a lonely corpse was discovered in a yeogwan in Daegu. A man in his fifties named Kim had written a note and hanged himself. Diagnosed with HIV three years before, Mr. Kim had been deserted by his family. But he finally chose death because of the disgusted reactions of still others upon learning of his HIV positive status. Sadder still, in his letter he asked the discoverers of his body to treat it with care.

Who Drove Mr. Kim to His Death?

Of all the most-watched diseases in the world, none is more so than AIDS. It has been 27 years since the discovery of HIV but our society has still not shed its perspectives on AIDS as “a horror”, a “dirty illness”, and an “immoral disease”. Moreover the insufficient support and medicines supplied to AIDS patients by our society makes it difficult for them to come out into the daylight.

According to the National Human Rights Commission’s 2005 report “Investigation of the Situation for the HIV Positive and AIDS Patients” (HIV 감염인 및 AIDS 환자 인권상황 실태조사), the leading cause of death for the HIV positive is suicide. The suicide rate among the HIV positive is an incredible ten times the national average. KANOS, the Korea HIV/AIDS Network of Solidarity (한국HIV/AIDS감염인연대), often receives phone calls to its consultation center from HIV positive people who want to die. Every time they hear news of a death their hearts become heavy. Even when the number of them lets up their worries do not end. Why do they feel as if they have no choice but to die?

It is clear that our society takes a discriminatory view of AIDS patients. This discriminatory view begins from prejudice and is closely connected to vague thoughts of AIDS as a dirty disease.

Before the causes of AIDS were discovered and people had access to objective information about it, it was thought that gay men were fully responsible for it.

But even when people who were not homosexual began contracting AIDS, it was still thought of as a disease not related to me, “something you get through dirty sex”, and it continued to be stamped with stigma. A person who has AIDS becomes less free because of prejudice. At the moment of learning that one is infected, all self-pride and love of life can easily disappear.

Repulsion at themselves grows without end and death and life are inseparably joined.

AIDS Prevention Policies Ignore Human Rights

Stuck with the label of dying from AIDS, and unable to freely receive treatment due to prejudice, they must put themselves into the care of the government’s AIDS policy. The government’s AIDS prevention policy is heedless of patients’ rights. The most prominent example is 1987’s AIDS prevention law (후천성면역결핍증예방법). Though it has since been amended several times [most recently in February 2008 — translator’s note] the law still considers the patients to be contagious disease carriers and the “control and quarantine” paradigm has not been discarded.

Such laws and policies show the discriminatory thinking our society has about AIDS patients, and the intentional discrimination that produces. Discrimination against AIDS patients, intended to protect the lives and safety of the non-infected, takes several forms.

Once they learn they are infected with HIV or AIDS, they fall into a situation of government control as they have to rely on local government services and clinics. Before receiving treatment for their illness they become a ward of the government’s control policies. On the pretense of searching for the cause of their infection they are ordered to divulge the details of their sexual orientation and relationships without regard to their individual will. From that moment they are in the control of the state, and spend their lives fearing exposure of the fact that they are infected.

These government policies must be decisively reformed. And instead of focusing on “vulnerable groups” like gay men government AIDS prevention efforts should be re-formulated with “AIDS prevention being the foundation for the human progress of the infected”. Appropriate societal policies created by UNAIDS are being blocked, and there is discrimination and prejudice against AIDS patients because people see them as the primary causes of the disease’s spread.

And this means that the reason that human rights-based AIDS treatment and prevention are needed is because human rights violations at the time of infection are the principal cause of further infections. Today HIV/AIDS is at critical moment in terms of human rights, not in terms of disease, and without respect for those rights efforts to contain its spread will not meet with success.

December 1st is “World AIDS Day”. In Korea and the whole world on that day, people will again speak of AIDS prevention and human rights. What meaning does December 1st really have for AIDS patients living on the border between life and death? With their financial troubles and the pain of their disease they aren’t interested in whose day it is.

What AIDS patients need is not superficial one-day treatment or one-day voices against discrimination and prejudice. They need human rights made real through action. With the discrimination against them in our society, everyone should listen to what they have to say that no more die of it.


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