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這名巴西醫生表示:縱使科學日新月異,愛滋病病毒的汙名依舊存在

對 Carué Contreiras 這位積極的公衛醫生而言,防疫除了預防外,還要以澄清誤解為目標。照片來源: Sham Hardy/Flickr, CC-BY-SA 2.0)

從科學的角度來看,後天免疫缺乏症候群(AIDS)感染的癒後相當成功。在過去55年來,感染從全球性的災難轉變為可以控制的疾病。

新藥的副作用較小且效果比較好,能夠讓有人類免疫缺乏病毒(HIV)的患者,幾乎沒有後天免疫缺乏症候群(AIDS)的症狀。感染獲得控制時--或患者的病毒反應呈現「無法檢測」時,以醫學術語來說 --不會透過性交而感染。現在,有人類免疫缺乏病毒(HIV)的患者平均壽命與一般人並無差異。

然而,人類免疫缺乏病毒 (HIV) 及後天免疫缺乏症候群(AIDS)的患者(通常統稱為愛滋病病毒感染者 PLWHA)仍需要面對社會的污名化,因此,他們的權利受到限制、禁止尋找伴侶、禁止公開及集體地為他們答辯。污名化導致緘默及孤立、進而造成疾病及死亡。根據愛滋污名與歧視調查(People Living with HIV Stigma Index),20%的愛滋病病毒感染者(PLWHA)在過去一年內有過自殺的念頭。該調查由聯合國AIDS計畫所發起,並在數個國家展開研究。

巴西公衛醫生及積極行動者CaruéContreiras為全國愛滋病患者網絡(National Network of People Living with HIV / AIDS, RNP +)的成員,亦為從業於科學與人權間的專業人士之一。他透過電子郵件告訴全球之聲:「科學持續發展演進,但是我們對愛滋病病毒感染者(PLWHA)的負面態度,並沒有因此而改變。這樣的態度,以策略的本質來說,可以被稱作血清恐慌症(serophobia)。」

Carué Contreiras 照片來源: 個人檔案,經許可刊登。

世界衛生組織(World Health Organization, WHO)的數據指出,截至2016年年底,世界上有超過3,600萬人患有人類免疫缺乏病毒(HIV)。據估計,年齡介於15至49歲間的成年人有0.8%是病毒的帶原者,但是他們的地理分佈極為不平均--在南非,這個年齡層的HIV帶原者占人口比率4.2%;而在美洲的比率則較全球平均值為低,僅有0.4%。

巴西是全球最先透過公共衛生系統免費提供HIV抗原藥物的國家。自1990年代以來,新發感染人數即一直持平;這也是頭一遭,有超過半數以上的HIV患者受到治療。

但是,這樣的成就並不足以忽略愛滋病病毒感染的患者(PLWHA)在巴西持續面對的歧視問題。「愛滋病病毒感染者(PLWHA)的聲音很容易受到新聞媒體的忽視,新聞媒體經常將他們描述成為受害者、或歸類為不做好安全預防的範例。」

請看完整訪談內容如下:

儘管目前治療方式有相當進展,為什麼關於人類免疫缺乏病毒(HIV)的討論仍然被忽略?

The first layer of prejudice, the fear of transmission by casual contact, is relatively simple to deconstruct. But, at a deeper level, serophobia derives from other sexual oppression, and attributes to us moral failure or personality drift. The various expressions of serophobia are complex and interact with other prejudices against marginalized groups — like misogyny, sexism, racism, transphobia and others, depending on the place. In regions where the disease and death from AIDS are still frequent, those images actively inform serophobia.

顯而易見的就是那第一層的偏見--害怕經由接觸而感染 。但是,就更深層而言,血清恐慌症來自於其他的性壓迫,並被歸因於道德敗壞或性格漂移。血清恐慌的多種表徵是複雜且與區域有關的,並在與其他邊緣群體的偏見交互影響下生成,如:厭女症、性別歧視、種族歧視、跨性別恐懼…等等。後天免疫缺乏症候群(AIDS)所造成的疾病和死亡在某些區域仍舊頻繁,這些印象往往促成血清恐慌症。

大多數來自非政府組織及政府的公開活動都側重於預防面,不過部份行動人士認為,需要透過其它方法來抵抗愛滋病。針對這部份你可以談一下嗎?

Campaigns about health education often lapse because they restrict the message to prevention only and end up ignoring the actual person living with HIV. Of course, access to prevention is important for people to build autonomy in their own sexuality. However, in the case of HIV, there is always an other side, an “other”, which is the PLWHA. Unlike the person with gonorrhoea, having HIV is a lifelong identity that is related to the loss of rights.

An educational discourse that is confined to “how to protect yourself” – and gives PLWHA the role of vector – will only reinforce alterity and serophobia. In contrast, a message that starts with a consistent problematization of serophobia and is neutral with respect to serological status may help to dissolve the silence. Silence neuroticizes subjectivities even among negatives [people without HIV], thereby causing paranoia and denial, which interfere both in coexistence and affection, as well as in the ability to prevent HIV transmission itself.

健康教育的宣傳活動經常無效,原因在於活動僅設限於預防訊息,而忽略到患者該如何與人類免疫缺乏病毒(HIV)和平共存。當然,獲得預防對於人們在建立自己性行為中的自主權很重要。但是,在談論人類免疫缺乏病毒(HIV)時,還必須考慮到另一方,這裡所指的「另一方」指的是愛滋病病毒的感染者(PLWHA)。不同於淋病患者,人類免疫缺乏病毒 (HIV)是一種「終生喪失其權利」的身份。

若教育僅侷限於「如何保護自己」,並賦予愛滋病病毒感染者  (PLWHA) 一個帶原者的角色,只會強化異己隔閡並加深血清恐懼。 相反地,若有一個能以共同的「血清恐懼症」問題作為起點、並以中立的角度看待血清學的(教育宣導上的)訊息,也許能有助於打破沉默。即便是檢驗呈陰性反應的族群(未受人體免疫缺損病毒感染的人群),緘默也會使其變得偏執並拒人以外,進而干擾他們與其他人共同生活及產生情感交流的能力,乃至於遏殺了預防人類免疫缺乏病毒(HIV)傳播的可能性。

在這些情況下,媒體所扮演的角色是什麼?

Media representation tends to polarize between excitement by scientific achievement and a fatalistic and victimising gaze of individuals or deeply afflicted countries. Medical science is undoubtedly the most visible and exciting aspect of HIV — note that there is rarely a physician's statement missing from a news story. Unlike malaria and other diseases common in developing countries, there is significant funding for research on HIV treatment and prevention, which brings about potentially life-changing services.

However, the social aspects, which are related to human rights, are less visible. But they help explain why scientific achievements do not reach everyone. PLWHA's voices are especially neglected by the media, which often portrays them as victims, or examples not to be followed, under the auspices of promoting prevention. But this kind of advocacy ends up reinforcing serophobia.

新聞媒體的表述偏好將令人振奮的科學成就,與個人或深受折磨的國家其宿命及犧牲者目光化分開來。醫療科學在人類免疫缺乏病毒(HIV)方面,無疑是最顯而易見且最振奮人心的範疇--你可能曾注意到,很少有(醫學進展方面的)新聞報導會省略掉醫師的陳述。有別於瘧疾和其他開發中國家常見的疾病,人類免疫缺乏病毒(HIV)的治療及預防研究有大量資金的援助,這可能會帶來生活上的改變。

然而,就與人權相關的社會層面來說,(在媒體上)反而不那麼明顯。這也解釋了為什麼科學成就無法使人人受惠。愛滋病病毒感染者(PLWHA)的聲音,特別容易受到新聞媒體所忽視,新聞媒體經常將他們描繪成受害者,或是推行防護措施下不值得效法的對象。但這樣的言論最終只是強化血清恐慌症罷了。

「高風險族群」(High-risk groups)是早期用來指稱後天免疫缺乏症候群(AIDS)的用語。現今,公共衛生專業人士更喜歡用「關鍵受影響人口」(key affected populations)這個措詞。為什麼這樣的改變很重要?

The evolution of the categories used to explain why some groups are more affected than others reflects the advancement of the understanding of HIV from a rights perspective.

‘High-risk groups’, which comes from a time when LGBT people had no rights at all, sees HIV as a natural consequence of deviant behavior, intrinsic to certain groups — thus justifying marginalization. Therefore, restricting the rights of ‘risk groups’ was necessary for the well-being of general society.

Then came the term ‘high-risk behavior’, which correctly conveys a risk of infection for the entire population, but still exaggerates individual responsibility. The term reinforces the notion that people who have become PLWHA are those who already had a deviant profile. It is still serophobic because it generalizes a profile for PLWHA and ignores, for example, external elements such as prejudice and isolation. In addition, the term exempted governments from certain responsibilities.

A major contribution to the social theory of HIV was the next category, ‘vulnerability’ or ‘vulnerable populations’, which focused on the context in which a person lives, and on how violations of rights, power imbalance and access to services can affect the ability of a person to control risk.

The term ‘key affected populations’ is recent and maintains the interpretation of ‘vulnerable populations’, but adds the need for meaningful involvement of social movements in AIDS-response decisions.

闡述「為什麼某些群體較其他族群更易受到影響」的分類方式逐漸演進,並反映了從權利的角度而言,(人們)對人類免疫缺乏病毒(HIV)了解已見提升。

「高風險族群」這個稱號來自一個LGBT族群仍毫無人權可言、將人類免疫缺乏病毒(HIV)仍視為行為偏差的時期,並理所當然地將特定族群邊緣化。因此,(在此定義下)嚴格限制「風險群體」的權利,在過去對整個社會福祉來說是有必要的。

接著,「高風險行為者」(high-risk behavior)這個用語出現了--它妥善地傳達群眾可能受到感染的風險,但是仍誇大了個體所應負擔的責任、並強化「受感染的人是行為偏差的人」的觀點。因為這個概念概括了愛滋病病毒感染者(PLWHA)的狀況,比方說:忽略了感染者可能本來就有孤立特質等因素等等,因此仍帶來血清恐懼症。再者,這個用語忽略了政府所擔應的某些責任。

一個對於人類免疫缺乏病毒(HIV)的社會理論有卓越貢獻的觀點是接下來的範疇,即「弱勢」或「弱勢群體」的概念,其主要偏重在個人如何生活、權利如何遭到侵犯、權力如何失衡以及服務如何取得等面向,並說明這些概念會怎麼去影響個人的風險管理能力。

「關鍵受影響人口」一詞在近年來代表、並維持了「弱勢群體」這樣的詮釋,但亦新添了後天免疫缺乏症候群(AIDS)對其在社會活動中參與決策的必要性。

這類範疇的使用是否已達成共識?

No. These categories reflect political positions, so, unfortunately, we have not yet outgrown the old interpretations, which are still present in current discourses about HIV, depending on the interlocutor.

One example is the different interpretations of the spike in new infections among young people in Brazil – a generalization that conceals the fact that most of them are LGBT. The media cliché, which has become common sense, is that their “irresponsible” behaviour may stem from the fact that “they did not see their idols die.” The burden lies on the individual, resting in the belief that it all depends on the young person's choice, so one can conclude that the category actually used here is ‘high-risk behavior.’

However, an analysis from the vulnerability point of view may reveal the fact that the battle for LGBT adolescents’, and all young people's, rights to sexuality still occurs on the margins of society, since it was not followed by effective public policies and educational campaigns.

Another example is that most authorities in the world today use the term ‘key affected populations’, but few demonstrate understanding of the importance of civil society's participation. Therefore the term is emptied of practical meaning.

I should also add that even when using an appropriate category, the social theory of HIV reflects biases common in academia. One example is how researchers interprets the enormous inequality of AIDS between white and non-white people in Brazil. In a country that is founded on the myth of racial democracy, the contributions of black academics are silenced by an essentially white academy. Therefore, in Brazil, unlike the United States, there is little evidence of critical racial theory within HIV social theory.

These examples make it clear that we not only need to talk about HIV, but, most importantly, we need to be very aware about the way we speak about it and whether the discourses do or do not foster prejudices.

並沒有。這些分類反映了政治立場,所以不幸的是,我們尚未突破舊有的詮釋,這些詮釋仍然存在於當前關於人類免疫缺乏病毒(HIV)的論述中--主史取決於對話者的選擇。

一個例子是對巴西「年輕人」新感染率的不同解釋 -- 這是一種掩蓋了其中大多數人都是LGBT族群的概括化。媒體一如往常地將此現象「不負責任」地歸因於「他們沒有看到偶像(因愛滋病)死亡」,並將責任歸咎於個人行為、並導向這一切都取決於年輕人的自由選擇權;因此,人們可以得知在這樣的情況下,用語的使用傾向「高風險行為者」的概念。

然而,從弱勢的角度來看,也許揭示在缺乏有效的公共政策和教育宣導之下,LGBT的成年人及所有青少年間性權力仍就處於社會邊緣這樣的一個事實。

另一個例子則是,現今世界上大多數有關當局都採用「關鍵受影響人口」這個名詞,但鮮少有人對公民社會參與的重要性有所了解。所以,實際上這個名詞只是空談。

我必須補充的是,即便使用適當的類別,人類免疫缺乏病毒(HIV)的社會理論反映了學術界普遍存在的偏見。其中一個例子就是,研究人員在解釋巴西白人與非白人之間後天免疫缺乏症候群(AIDS)時所顯現的不平等。在一個民族自決至上的國家,黑人學者的貢獻本質上是被白人所在的學術界所壓制。因此,不同於美國的情形,在巴西幾乎沒有批判種族理論的證據。

這些例子清楚的呈現,我們不僅需要討論有關人類免疫缺乏病毒(HIV),而且更重要的是,我們必需要非常清楚的知道我們談論的方式、以及這樣的言談是否會助長偏見。

校對:FangLing

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