在台灣有個透過網路連結的愛滋社群，專門提供服務HIV感染者。目前存在於Facebook中，申請人必須要符合是感染HIV，並要繳交身分證件，審核過後才可以加入到這個大家庭。今天小編榮幸可以訪問到創辦人之一，人稱Smile的陽光大男孩，讓更多人瞭解為何想要進行這領域的社會工作，以及服務過程中的酸甜苦辣。
In Taiwan, there is an online AIDS community, which provides services to people living with HIV. The community currently exists as a Facebook group. People applying to be part of the group have to be HIV positive. They need to go through identification screening before they can be approved to be part of the family. It was our honor to be able to interview one of the founders of the group, Smile, about his motivation for going into social work as well as the ups and downs in his career.
問：您是何時開始從事社會服務工作？為何想要進到愛滋領域呢？
Q: When did you start working in the social service field? Why did you want to enter the AIDS field?
答：從創辦至今已從事8年的光陰，會進入是因為朋友感染但因為延誤就醫導致死亡從中的協助而踏入服務。
A: I joined the field as early as the organization was created 8 years ago. I got involved because one of my friends got infected with HIV and passed away because he did not seek medical assistance sooner. I got into the field as I was helping him.
問：FB這個不公開社團的在哪一年成立的？申請的資格與過程為？
Q: When was this Facebook group created? What are the qualifications for being a member? What was the application process?
答：2011年成立，爾後其他夥伴逐漸加入，因團隊成員夥伴課業忙碌時由我開始管理與規劃，申請資格可透過網路與指定醫院個管師，或各NGO聯繫可直接索取實體酷卡，在羅一鈞醫師撰寫的書籍《心之谷》一書也有提到相關聯結資訊方式。此書是台灣許多感染者必備的心靈書籍，以生活化方式講述感染者會面臨到的疑難雜症，以及提供解決之道。
A: It was established in 2011. With more people joining and some people in the team getting occupied with their schoolwork, I started to take up the work of management and planning. People who want to apply to be part of the group can get help online or through their case manager or through getting Koolcards from some NGOs. They can also find a lot of information in Dr. Lo’s book, which describes potential problems faced by the HIV positive as well as solutions to these problems.
問：目前有多少人在此社團呢？可以介紹你們團隊與其服務嗎？
Q: How many people are currently part of the group? Can you introduce your team and the services you provide?
答：目前社團共有約672位，而服務團隊有16位。服務內容包含：互助陪伴包含入院與手術陪伴、因愛滋身分導致手術與回診會曝光身分，所以無法讓家屬與親友知道、互助借藥系統、透過線上表單統計全台灣藥物種類與服用項目，達到藥物互借，讓朋友產生產生服藥漏藥與治療失敗之狀況。以及每月活動陪伴、透過每月活動讓感染者朋友可以一起出遊相聚，並討論之身遇到狀況，還有申訴服務、透過感染者遇到就醫與工作等等之權益受損提供申訴協助。
A: Currently, there are 672 members. The team has 16 people working. We provide several services. First, we provide assistance and companionship. We accompany them for surgeries and during hospitalization, especially when they cannot expose their identity as HIV patients to their family. Second, there is a medicine loaning system. With an online form, we compile data and information about types of medicine and medical services available around the country, so that there can be mutual medicine loaning as well as discussion about their conditions with various treatments. In addition, we also organize outing activities, where they can gather and exchange information about their experiences. Finally, we also help them file complaints and requests regarding the violation of their medical and employment rights.
問：在服務愛滋個案這段期間，有什麼令你印象深刻的事件嗎？
Q: During the time of your work with the group, has anything made an impression on you?
答：有。曾經有感染者因為感染身分而選擇自殺，透過表單上的資料我們先向警方通報，其他團隊夥伴趕達現場，並破門且陪伴送到醫，在鬼門關前拉回一個人，後續此感染者也因為陪伴選擇服藥，並打消自殺念頭，目前已回歸社會。
A: Yes. Once a member chose to commit suicide due to his status of being HIV positive. We were able to notify the police, and the team was able to arrive at the scene, entered and escorted him to the hospital, saving his life. This person, because of companionship from the team, also chose medication over suicide and has now returned to the society.
問：對你跟團隊來說，什麼是你們從事服務當中，最大的挑戰？
Q: What’s the biggest challenge for you and your team?
答：申訴，台灣在公部門流程的互踢皮球與導致侵權重複發生，感染者面對到的位階不平等與內化歧視的加深。因機構與醫院對於公部門之的互依關係導致，讓許多感染者在發生侵權案件，一開始不敢開口但開口卻也無人處置，單位間也害怕申訴可能導致互依關係破裂，這中最低階的病患被犧牲，改變制度階層在與消除內化歧視，是申訴實務上我們面對最大的挑戰，
A: Filing complaints and requests. In Taiwan, the procedures in the governmental departments sometimes cause avoiding responsibilities and violating human rights. The HIV patients are sometimes faced with deteriorating internalized discrimination. Many organizations and hospitals are dependent on the governmental departments. This sometimes causes violation of human rights. Many HIV patients do not dare to seek assistance, and even if they do, they are left alone. Many organizations do not file complaints for fear of damaging their relationship with each other, and the victims in the end are the patients. Changing the hierarchy in the system as well as dissolving the discrimination are the biggest challenges we have to deal with when filing complaints.
問：從外人看服務，感覺非常困難。如何從服務中獲得成就感呢？
Q: How do you achieve a sense of accomplishment in the work you do?
答：愛滋服務其實是多重的，發現拉掉疾病身分後服務對象其實需要受助的原因都相同家庭結構問題、自我認同問題，只是愛滋這身分可能讓更多人產生誤解與歧視，一點都不綑，可以做得很多。
至於成就感，是看見感染者可以看見自己的價值，讓感染者體會自己也是個一般人。
A: Our work has multiple facets. I found that even if you overlook their identity as HIV patients, you realize that they have a lot in common in terms of why they need assistance. The reasons are usually linked to family issues and identity crisis issues. Their identity as HIV patients can cause much misunderstanding as well as discrimination. There is a lot of work to do. As for a sense of accomplishment, seeing them see the value in themselves and understand that they are also ordinary people is how I get a sense of accomplishment.
問：就這個社團而言，你們最終目標或期待為何？
Q: What is the end goal for this group?
答：台灣目前愛滋制度與服務依然存在許多問題，希望我們可以翻轉這些有問題的制度與服務。
A: Currently, there still exist many problems in the system of HIV services. Hopefully, we can reverse some of these problems.
問：現今台灣社會對HIV仍不太友善，你有什麼話想對罹患HIV的朋友說？
Q: Taiwan’s society is still not completely friendly to the HIV patients. What do you want to say to people living with HIV?
答：在台灣受HIV感染還是一件不可告知的事情（或許在國外也是），在生活上會遭遇到許多歧視，例如生活或工作及感情等各類問題。也許你正面臨這件事情，也許你已感染許久，不妨給自己一個機會，透過這個社群重回社會，找到擁抱自我和重建信心。你值得被愛，也值得去愛人。
A: In Taiwan, many HIV patients still live in the closet (maybe in other countries, too). They may encounter discrimination and have problems in life, at work, and in terms of relationships. Perhaps you are going through similar issues, perhaps you have been a long-term patient. Give yourself an opportunity. Return to the society through this community. Rebuild your confidence. You deserve to be loved and to love others, too.
若你知道身旁有朋友為HIV，需要有更多溫暖以及團體支持，可以建議他到這個社團，正如同社團標題所言，「你不是一個人」，有藥有愛，幸福生命永存在。若有進一步需求，歡迎寫信至以下信箱：imperialcrown456@gmail.com
If you know anyone living with HIV and in need of warmth and group support, tell him about the group. As the group’s slogan goes, “You are not alone!” With medication and love, your happiness and life can also be long lasting. For more information, please reach out at: imperialcrown456@gmail.com
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