我的家庭我的家我的未
By 徐玲玲 IDEA Taiwan 樂生家屬 2009/2/16
父親和母親是在樂生療養院認識結婚的,我於1968年出生於樂生療養院,樂生療養院是我的家。
樂生是所有院民和家屬組成的一個大家庭,也是一個漢生病族群弱勢卑微與世隔絕的天堂。
我有幸生長於此,讓我體認除了功利之外什麼是相互扶持與憐憫、什麼是人權、什麼是公理與正義。
姊姊一出生就被帶離樂生進入愛心育幼院,隔年在我出生之後也在樂生圍籬內外躲躲藏藏,這是院方的政策,我們被剝奪了家庭與親情最基本的人權。
父母沒有罪與錯,從他們踏進樂生的那一刻就決定了必須承受天刑的苦難。
當我識字開始接觸了外面的世界,我才知道父母所承受的苦。一舉一動是如此的卑微、沒有自我、微命是從,即使是需要被人體實驗新藥也不能不依。
父母為了養育我們比一般正常人加倍辛苦,必須瞞著院方帶著病體偷偷外出打零工,來維持一家正常的開銷。
在樂生的阿伯阿母都是求生意志很強烈的人,若是沒能通過這樣的考驗,屢見有人尋死以求解脫。
我喜歡尚未被破壞的樂生,我的家在一點一滴被啃食,或許您不能理解這兒的珍貴、不懂這是所有病患及家屬所耕耘的淨土,即便用殘缺的肢體,施肥灌溉、砌磚疊瓦、用吞忍的的毅力與一輩子青春所換來的點點滴滴。誰能告訴我全世界有幾個這樣深具廣泛意義的指標場域,豈能容許無知、權謀的人一再破壞;讓純潔天堂變成空洞沒有內涵的廢棄場。
我珍惜樂生的人生體驗,我願意持續關懷弱勢,願意與全世界漢生病患及家屬相互扶持。盼望由身於底層的我們能夠一起串連全世界的漢生家族一起來推動改革伸張漢生人權、文化古蹟、醫療的歷史使命。
漢生人權如能獲得全世界的平反,才是新一世紀的來臨。
My Family, My Home, My Future
Hsu, Lin-Lin, IDEA Taiwan, family member of Lo Sheng residents
Dad and Mom met each other and then got married in Lo Sheng Sanatorium (Lo Sheng). I was born in 1968 in the sanatorium, where my home has always been.
Lo Sheng Sanatorium is like an extended family composed by all of the patients and their family. Moreover, it is a heaven where the minority suffering from Hansen’s disease has been secluded from the world.
I appreciate being raised up here, which allow me experiencing the interaction of care, sympathy, just and human right instead of those running after material success and monetary profit.
My elder sister was brought to an orphanage away from Lo Sheng as soon as she was born. My parents had to sneakily hiding me when I was born the next year to avoid the imposition of the institutional policy, which deprived the lepers of their basic human right to staying with family.
My parents have no sin or fault. However, they have been enduring extreme pain once they stepped into Lo Sheng.
I did not understand how much pain they have been suffering until I learned to read and started to contact with external world. They have been so understated, selfless, and humble. They were even unable to resist being forced to participate in new drug testing.
To take care of us, my parents had to work much harder than usual peoples in a way that they pursued part-time job outside Lo Sheng secretly.
All of the elders remaining living in Lo Sheng are people with unusual strong will. Frequently, people could not take it anymore committed suicide to retreat from such plight.
I like Lo Sheng as the way it was. Nowadays, my home has been damaged bit by bit. Perhaps you can not understand the values of this sacred land, where all of the lepers and their family cultivated the place with their handicapped bodies, tenacity, and their whole lifetime. How many landmark places invested with great meanings like this leprosy exist on the earth? We could never allow those inconsiderate but powerful people ruining this place again and again and turning this heaven into a dumping ground.
I cherished all my life experiences around Lo Sheng greatly. On this note, I will keep caring for the minority and supporting those people affected by Hansen Disease and their family. As one of the oppressed people on the ground, I am hoping that our efforts could reach the Hansen’s family over the world. All together we should carry out this historical mission, campaigning for improving leper’s well being including issues of human right, cultural heritage preservation and medication.
Only when the Hansen’s Human right could be recognized and justified will truly come the new century.
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