Disampaikan dengan hormat komitmen yang sangat mulia dari Pak Joko Widodo terhadap Penyandang Disabilitas Indonesia, termasuk dalam bidang : sebagaimana tertuang dalam PIAGAM PERJUANGAN PROF SUHARSO.



Saya Joko Widodo, Calon Presiden Rakyat Indonesia menyadari bahwa tidak mungkin ada perlakuan yang tidak diskriminatif terhadap penyandang disabilitas tanpa perubahan persepsi.

Tanpa perubahan persepsi, maka diskriminasi terhadap penyandang disabilitas tak akan pernah berakhir.

Oleh karenanya perjuangan yang harus dilakukan adalah membongkar persepsi kita bahwa penyandang disabilitas adalah masalah social yang jadi beban Negara, kelompok masyarakat yang sakit, yang harus dikasihani dan sekedar obyek pembangunan.

Saya, Joko Widodo, jika saya mendapat mandate dari rakyat untuk jadi presiden rakyat Indonesia, saya berkomitmen :

1.Menjadi bagian dalam perjuangan untuk pengakuan, perlindungan dan pemenuhan hak-hak penyandang disabilitas. Saya akan berjuang untuk lahirnya undang-undang yang. Memberikan kepastian bagi penyandang disabilitas dalam memperoleh hak ekonomi, sosial, politik, pekerjaan, kebudayaan, jaminan pendidikan dan jaminan sosial, yang sesuai dengan UUD 1945 dan konvensi PBB tentang hak-hak penyandang disabilitas.

2.Menjalankan kewajiban pemerintah RI sesuai amanat konstitusi, menegakkan keadilan dan HAM bagi penyandang disabilitas sebagai manusia maupun rakyat.

3.Membangun pemerintahan yang memiliki persepsi bahwa penyandang disabilitas adalah asset bagi Negara, bukan beban, termasuk dalam keputusan yang diambil baik berupa kebijakan politik regulas maupun kebijakan politik anggaran. Karena bagi saya harus ada keberpihakkan Negara dan akses dalam setiap putusan politik dan implementasinya, agar penyandang disabilitas pun mampu menjadi subyek dalam pembangunan.

Saya ucapkan terima kasih kepada penyandang disabilitas dan keluarganya yang sudah menjadi bagian dari perjuangan ini. Namun saya menyadari semua komitmen yang saya sampaikan, tak mungkin bisa dijalankan, jika kita tidak memenangkan Pilpres 9 Juli 2014.

Saudara-saudara sebangsa dan se-Tanah Air, saatnya kita bergotong royong, berjuang bersama mengawal suara Rakyat hingga penghitungan. Selesai. Saya, Joko Widodo, saya siap berjuang bagi Rakyat Indonesia sekuat-kuatnya, sebaik-baiknya, sehormat-hormatnya!

Jakarta, 5 Juli 2014.
Ber-meterai Rp. 6.000,-
Ditanda tangani.
Joko Widodo
Calon Presiden Rakyat Indonesia.


DEMOKRASI UNTUK DISABILITAS – Bangun Pemberdayaan Dari Bawah dan Dari Pinggiran !





Silahkan membaca dan berpartisipasi, WA kami di 08159045699 SALAM


Last Days Of A Leper Colony – By BOOTIE COSGROVE-MATHER AP March 22, 2003, 4:22 PM

SUATU KISAH LAMA – namun perlu dicermati dengan baik dengan kondisi kita di TANAH AIR !!
Diambil dari :
Between the tears and memories of hundreds of funerals, Paul Harada finds some comfort in the feeling that his dead friends and neighbors are now free.

“In fact, I think these are the lucky ones – they’re not going to suffer any more,” he said.

Stricken with leprosy as a teenager, Harada was torn from his family and banished to this isolated peninsula on the island of Molokai to die. Today, Harada, 76, is one of the last 40 elderly patients of Kalaupapa, where thousands from the Hawaiian islands were quarantined from society over the last century.

Harada has had the option of leaving this place of exile for decades. Yet, he chooses to stay.

“I’m all crippled. What am I going to do outside?” said Harada, raising his nearly fingerless hands to his aged, tanned face. “How am I going to live?”

Kalaupapa was once a sprawling and lively community with a population of more than 1,000. Now graves outnumber patients nearly 200 to 1.

After being diagnosed with leprosy, now known as Hansen’s disease, Harada was forced by the Territory of Hawaii from his home on Kauai to Honolulu before being shipped to Kalaupapa on June 29, 1945, with five other young men and two middle-aged women.

“I kind of accepted the fact that I’m going to come here and die here,” he said.

The population at Kalaupapa was more than 400 when Harada arrived, but has steadily dwindled, and so has the number of funerals.

“When I first came over here, the church bell was tolling every day, every day for weeks,” he said.

Harada lives with his wife of 48 years, who was also a leprosy patient, and spends his days tending his lush yard filled with tropical flowers, vegetables and fruits – such as bananas, mountain apples, avocados and papayas.

The residents are still called “patients” by each other and the state, although they have all been cleared of the dreaded and disfiguring disease once thought to be a curse.

They live in this tiny ghost-town-like neighborhood consisting of a few dozen rural single-story homes and buildings.

There are no schools, no children, no movie theaters, no sunbathers at the beach, no restaurants or supermarkets. There is no traffic signal for the narrow road that winds through the settlement to the airport that resembles a barn.

The Kalaupapa Peninsula is surrounded on three sides by the white-capped waves of the Pacific Ocean, with the rugged green cliffs of Molokai on the fourth. It is accessible only by small planes, boat or mules that carry tourists down the steep cliff trail.

Kalaupapa was named a National Historical Park in 1980. After the last patient dies or moves away, the peninsula will be administered by the National Park Service.

Meanwhile, the patients, whose average age is 75, lead leisurely lives typical of other Hawaii senior citizens – fishing, gardening, reading, watching television.

“It’s really no different than living in any small town,” said Michael McCarten, the state Health Department administrator for the settlement, who lives in Kalaupapa four days a week.

Some patients sip afternoon beers at Elaine’s Place, a patio of a house turned into a makeshift bar, open a few hours a day when owner Elaine Remigio, 80, wants to.

They’ll occasionally travel to another Hawaiian island, but Las Vegas is their favorite destination.

“That’s the only place they go,” said Richard Marks, 73, a patient and the local sheriff and historian. “They say, ‘People stare at me, I’m disfigured, I don’t want to go out in public.’ The next thing you ask them, ‘Do you want to go to Vegas?’ They say, ‘When? When? When?”‘

One man told Marks he likes the Hawaiian food in Las Vegas.

Everyone attends one of the three active churches in Kalaupapa. There are seven Protestants, three Mormons and 30 Roman Catholics.

“You take religion for what it is and it keeps you very stable,” said Harada, a Catholic. “I think religion is the greatest thing that has ever happened to me and I’m very happy with that.”

About 8,000 people have been exiled here since 1865, when King Kamehameha V instituted an “Act to Prevent the Spread of Leprosy,” that forced people with leprosy or anyone suspected of having the disease to be secluded on land that was set apart. The law remained in effect until 1969, when admissions to Kalaupapa ended.

However, some of the rules remain in place. All visitors must be at least 16 years old and have a permit from the state Health Department. A maximum of 100 visitors are allowed on the property a day, including state and federal workers.

There’s still no road that connects them with the rest of island, or “topside Molokai.”

Once a year, the residents celebrate “barge day,” when heavy items – televisions, home-building supplies, appliances, cars and other items – are brought in on a ship.

Fresh milk, vegetables, bread and meat are all brought in regularly by airplane, along with newspapers.

A few homes that used to house patients are now vacant. There are also relics of old buildings, including the Federal Leprosy Investigation Station.

The state provides the patients with medical care, housing and a modest pension, which kept most patients in this simple and quiet community.

“To simply put it, it’s their home,” McCarten said. “The average patient has been here 50 years. … They have become so used to an isolated way of life, they’re somewhat uncomfortable on Oahu or some place like that.”

Many have tried life outside Kalaupapa, but some returned when they couldn’t find work and were outcast by their neighbors and sometimes their own families.

“Some of them couldn’t stand it,” Marks said.

Makia Malo, who was sent to Kalaupapa in 1947 when he was 12, is one patient who a found life on the outside. Even though leprosy stole his sight and the feeling from his hands – preventing him from reading Braille – Malo moved to Honolulu and enrolled at the University of Hawaii at age 37.

By listening to lectures and tapes while taking oral exams, he graduated seven years later with a bachelor’s degree in Hawaiian studies.

“It was somewhat scary because in the back of my mind, I wasn’t sure how people would accept me,” said Malo, 68, who now splits his time between Honolulu and Kalaupapa.

He found the struggle assimilating back into society was even more trying than the academics.

“One of the worst things about having had this disease is that even after you’re cured, society will not let you heal because of ‘L’ word,” Malo said. “People don’t know how hurtful and wrong that term is.”

Kalaupapa residents compare “leper” to a racial epithet. “Today, the word leper is our new battle,” Malo said.

Although leprosy patients can be freed from the disease with antibiotic treatment, the stigma can last a lifetime.

The public is still frightened of the disease, Marks said. “They have all the worst ideas about leprosy being such a contagious disease, which is plain nonsense. Over 1,100 people have come here to work since Father Damien, and Father Damien was the only one who got the disease,” Marks said, referring to the Belgian priest who ministered to patients from 1873 until his death in 1889.

He remembers an Australian doctor who visited Kalaupapa.

“She gets off plane and she looks like she’s a beekeeper,” he said. “The hat, veil and everything else.”

Marks recalls what happened when he picked up a paper bag that she dropped.

“She hollered, ‘Don’t you touch that. Don’t you know these people are lepers here?”‘ he said. “I mean this was eight years ago, not 100 years ago. There’s just not enough information.”

Harada was first allowed to leave the 8,725-acre peninsula in 1954 when he was cured of Hansen’s disease, which destroys the nerves and skin. But by that time, the disease had taken away most of his fingers as well as the feeling in his hands and feet.

“When I was young, I was like everyone else, with hair and everything else,” he said.

Harada said when he eventually visited family and friends, he made sure not to disclose he lived in Kalaupapa, to protect his family. But his secret eventually was exposed, which Harada came to see as “a favor.”

Returning to Kalaupapa, he manages to fish and garden despite the damage the disease did to his hands.

Marks, who operates the only tour business on Kalaupapa, has a family history of Hansen’s disease. His father, brother, sister, uncle, aunt are all buried here.

Marks was diagnosed with leprosy as a 21-year-old, when a few lesions appeared on his body, and immediately became a ward of the territorial government. But unlike Harada, Marks was already very familiar with Kalaupapa.

“I used to come down at night and visit my dad and go back up,” said Marks, who hiked a cliffside trail. “I wouldn’t even ask for a permit. But then my mother turned me in because the medications had just come in and she’d seen so much damage to her family. She felt it would be better if I got myself hospitalized while it was still new, before I got crippled.”

It’s unknown how leprosy was introduced to Hawaii, but it quickly took a toll on the population, especially with the native Hawaiians who had no immunities from the foreign disease.

When the peninsula becomes a national park, residents say they would like to keep the settlement undisturbed and un-commercialized.

“I don’t want a big tourist hotel,” Malo said.

They want visitors not only to know about the segregation and suffering of Kalaupapa, but also the lives of the patients.

“It’s good place. I have no qualms about this place,” Harada said. “It’s good enough for me.”

By Jaymes Song

© 2003 The Associated Press. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.

NEGERI PARA PEJUANG? Kemana Jiwa Pengabdian Kita Yang Tanpa Pamrih?

Sampai kini kami tidak mengerti kenapa isu-isu yang berhubungan dengan kesehatan selalu saja menjadi persoalan yang sangat sulit untuk di responin oleh para pengelolanya, dari hal hal yang dapat dikatakan sangat gampang sampai masalah yang berhubungan dengan kasus yang lebih sulit!, banyak pelayanan kesehatan yang kami lihat di lapangan tidak sesuai dengan semangat orang-orang yang bekerja di paramedis dan medis. Visi Kementerian Kesehatan. khususnya untuk penyakit menular, terlebih khusus lagi kusta dan frambusia, saya dapat menyimpulkan tidak ada sama sekali, apakah hanya tergantung dari luar negeri? atau tergantung dari usaha orang-orang kesehatan yang maunya bekerja sendiri ibarat komunitas kaum medis dan paramedis yang maunya menjadi “dewa” dan akhirnya memberikan sebuah obat untuk semua penyakit tanpa melihat secara kontekstual.

Pengalaman kami 10 tahun yang lalu dikala semuanya disediakan baik oleh orang orang yang bekerja sebagai fasilitator kesehatan dari bangsa lain, kita mau bekerja dengan “baik” karena semuanya tersedia, namun setelah mereka satu satu mulai exit, tidak ada satupun inisiatif yang berkembang sampai saat ini, seakan-akan “gizi” yang didapatkan harus bergantung dari rupiah dan gulden atau euro dan dollar. Sungguh keterlaluan, jika ini terus terjadi – dari Sabang sampai Marauke akan semakin sulit bekerja dengan orang orang yang belum memiliki jiwa yang berevolusi yang dinamakan Revolusi Mental, kenapa tidak ada satupun pemikiran yang “jenius” yang bisa dilakukan dengan tanpa berfokus pada diri sendiri?

Memang geografis negeri kita tidak semudah India dan China yang berada dalam satu daratan, disamping itu juga banyaknya timbul raja raja kecil, yang merasa mereka orang penting dan yang lain tidak penting !, Menyedihkan. Kemudahan berobat akhirnya terbentur dengan segala macam birokrasi dan kesombongan. Bahkan di Ibukota dan sekitarnya bisa bisanya orang yang mengalami kusta tidak diterima di rumah sakit dimana mereka dulu diobati kustanya sejak awal, untuk sakit perut aja dikasi obat kepala, sama aja dengan beberapa rumah sakit yang dulunya kusta di Sumatera Utara dan bahkan di Lampung obat obatan yang bernama MDT belum hadir padahal sudah dikejar kemana mana, dan sampai detik inipun semuanya masih berjuang, termasuk “pasien’ nya Kementerian Kesehatan tersebut ! Mau dibawa kemana bangsa ini oleh para “penjaga” nya?

Pernahakah dengan rendah hati “pemerintah” kita meminta masyarakat dan semua stakeholdernya untuk dapat bekerja sama dan memberikan kerja – kerja – kerja? untuk urusan yang paling hakiki dan azasi ini yaitu masalah pelayanan kesehatan dasar saja, kita ini berkilah!!. Pakailah otak dan kreativitas serta yang utama kerendahan hati kita untuk bisa bekerja sama dengan orang lain yang mungkin lebih RENDAH derajatnya dari para pegawai negeri dan birokrat. Pakailah hati nurani agar semua orang yang dimasyarakat termasuk yang mengalami kusta dan disabilitas dimampukan untuk berdaya dan bekerja sama, kami tidak meminta uang dan meminta jabatan, kami hanya meminta keadilan ! Hak Azasi dasar yang dihormati dan didudukkan pada kedudukan yang adil dan setara.

Ayo para pejuang negeri ! Kemana Jiwa Pengabdian kita taruh, apakah hanya di rumah sakit, poliklinik atau di rumah kita masing-masing? sungguh sangat menyedihkan di era keterbukaan saat ini kita ini masih menjadi orang paranoid!





Mari mempersiapkan dengan lebih baik untuk tahun 2016- dimulai dari komunitas akar rumputlah !!!




Pada tahun 2007, perobohan separa Penempatan Sungai Buloh, dikenali secara rasmi sebagai Pusat Kawalan Kusta Negara (PKKN), telah menyebabkan rakyat Malaysia dan badan-badan bukan kerajaan (NGO) untuk memberi tekanan kepada kerajaan Malaysia untuk memelihara koloni kusta ini. Sembilan tahun kemudian dan pada bulan Februari 2016, terdapat beberapa laporan media tentang rancangan Kementerian Kesihatan untuk merobohkan pusat koloni kusta dan bangunan-bangunan bersejarah ini. Tindakan ini adalah amat dikesali dan bercanggah dengan objektif Jabatan Warisan Negara untuk memelihara dan mencalonkan koloni kusta ini sebagai Tapak Warisan Negara dan Tapak Warisan Dunia UNESCO.

Menurut laporan media, Kementerian Kesihatan menyatakan sebab-sebab perobohan aset negara ini sebagai cara untuk menghentikan pendudukan migran tidak berdokumen yang duduk di rumah-rumah tinggal di penempatan tersebut. Lebih-lebih lagi, rancangan untuk membina 1,000 unit kuarters bersambung dan pembangunan Pusat Kawalan Penyakit Merebak Negara akan memusnahkan pusat bersejarah ini, mengganggu kehidupan para pesakit terdahulu dan aktiviti-aktiviti hortikultur, dan memusnahkan alam semulajadi.

Kepentingan Sosio-budaya dan Nilai Universal Hospital Kusta Sungai Buloh

1.        Penubuhan Penampatan Sungai Buloh memulakan sebuah era baru dalam pembangunan hospital kusta abad ke-20. Ianya merupakan hospital kusta terbesar dalam empayar British dan merupakan yang kedua terbesar di dunia. Lebih penting lagi, Penampatan Sungai Buloh adalah perancangan yang manusiawi sebagai penempatan komuniti manusia moden, berbeza daripada segregasi keras yang bagaikan penjara. Penempatan ini menyediakan pelbagai fasiliti moden dan membuka peluang kepada penduduknya. Penampatan Sungai Buloh menggunakan pendekatan pendidikan, berdikari, dan model persekitaran untuk sebuah kehidupan.

2.        Penampatan Sungai Buloh adalah salah satu warisan Garden City paling penting dalam sejarah alam bina di Malaysia. Ideologinya tidak hanya dilaksanakan secara konsep tetapi juga berjaya secara praktisnya sebagai sebuah komuniti manusia yang berdikari dan mapan, sebagaimana ideologinya seperti zon bebas, ruang terbuka, taman-taman, kemudahan awam, kawasan penempatan, kemudahan komuniti, padang terbuka dan lingkaran hijau untuk perladangan komersial.

3.        Penampatan Sungai Buloh adalah sebuah institusi unik yang menyatukan institusi perubatan, penempatan komuniti manusia, pusat pemulihan, dan koloni perladangan. Ianya dirancang sebagai sebuah pemangkin kepada bidang perubatan dan sosial untuk menyediakan perkidmatan perubatan, mencipta semula kehidupan sosial, menyediakan pendidikan dan latihan, serta melahirkan sebuah komuniti perladangan.

4.        Dalam masa lapan puluh enam tahun, Penampatan Sungai Buloh telah membangun kepada sebuah penempatan manusia yang matang dengan komunitinya tersendiri dan mempunyai sebuah penempatan hortikultur yang terkenal di Malaysia. Ia juga merupakan tempat tarikan para pencinta alam, jurugambar dan pengayuh basikal yang sukakan alam persekitarannya.

Tuntutan Kami

1.  Peliharakan Penempatan ini Sepenuhnya

Keaslian dan integriti koloni kusta ini patut dipelihara dan dilindungi sepenuhnya. Sebarang pembangunan baru di dalam pusat ini perlu mempertimbangkan penyatuan, penggunaan dan juga pemuliharaan bangunan-bangunan lama sebelum merobohkannya. Namun, pembangunan 1,000 unit kuarters bersambung dan Pusat Kawalan Penyakit Merebak Negara di komuniti ini pasti akan memusnahkannya. Demi memlihara penempatan ini untuk generasi masa akan datang, Kementerian Kesihatan dan Jabatan Warisan Negara perlu bekerjasama dengan kerajaan negeri Selangor untuk mencari penyelesaian yang lebih sesuai seperti memberikan tapak baru untuk pembangunan baru tersebut.

2.   Calonkan sebagai Tapak Warisan Dunia

Sejak kebelakangan ini, gerakan untuk memelihara sejarah kusta dan legasinya telah menjadi subjek penting dalam wacana antarabangsa. Penampatan Sungai Buloh telah berada di dalam hubungan antarabangsa ini selama bertahun-tahun. Para NGO juga telah membincangkan untuk menjadikan penempatan Sungai Buloh sebagai salah satu pusat koloni kusta penting di seluruh dunia sebagai Tapak Warisan Dunia Transnasional. Selain itu, Jabatan Warisan Negara juga telah menyatakan niat mereka untuk mencalonkan Penampatan Sungai Buloh sebagai Tapak Warisan Dunia. Sebelum ini juga Penampatan Sungai Buloh telah pun dicalonkan dalam senarai Warisan Negara.

3.  Taman Bersejarah Sungai Buloh

Kepentingan sejarah Penampatan Sungai Buloh bukan hanya penting di peringkat kebangsaan, ia juga terkenal sebagai model pusat koloni kusta penting di seluruh dunia, selain mengharumkan nama negara dengan unit kajiannya. Aset-aset bersejarah negara ini boleh dibangunkan dan disatukan dengan persekitaran dan sumber semula jadi dengan menjadikan pusat koloni kusta ini sebagai muzium terbuka dan taman bersejarah. Tujuannya supaya orang awam dan generasi muda dapat memahami pencapaian negara dalam sejarah dunia penyakit kusta, dan pada waktu yang sama dapat menjadi sebuah tapak budaya dan sejarah yang penting. Contoh terbaik ialah Taman Bersejarah Negara Kalaupapa di Hawaii, di mana ianya merupakan pusat koloni kusta pada masa dahulu.

4.   Lindungi Aktiviti Hortikultur dan Mata Pencarian

Aktiviti hortikultur yang giat di kawasan tengah penempatan ini telah menjadi identiti kepada penduduk di sini. Identiti ini memaparkan idea asal perancangan Garden City penempatan ini. Aktiviti hortikulturnya telah menjadi penghubung di antara orang awam dengan para pesakit kusta di sini. Ini telah membantu mengurangkan stigma penyakit ini dan memberikan sebuah mata pencarian kepada komuniti tersebut. Oleh itu, interaksi masyarakat-komuniti ini perlu diperlihara dan aktiviti-aktiviti hortikultur komuniti harus diteruskan.

5.   Hak untuk Memelihara Warisan

Komuniti Sungai Buloh, sebagai bekas pesakit, telah menjalani keseluruhan kehidupan mereka di koloni kusta ini kerana polisi-polisi kesihatan awam. Hak-hak mereka sebagai rakyat telah disekat sama sekali sejak mereka dikesan dengan penyakit ini. Selain melalui pengalaman perit kesakitan proses perawatan, para pesakit juga melalui keperitan berpisah dengan ahli keluarga, ibu bapa dan anak-anak sendiri, demi menjalani rawatan perubatan. Setiap struktur, laluan, ruang, dan bangunan di penempatan ini mengandungi sejarah kehidupan mereka, cara mereka bersosial, segala susah payah dan pengalaman mereka di bawah polisi segregasi kusta. Pengorbanan mereka patut diperingati dan dibalas dengan budi baik kita. Hak mereka untuk memelihara dan mewarisi legasi ini patut diberikan.


Keseluruhan pusat koloni kusta Sungai Buloh ini perlu diperlihara dan diwarisi sesuai dengan posisi pentingnya dalam menyumbang kepada pembangunan hospital kusta moden, sains perubatan dan sejarah penyakit kusta. Warisan-warisan ini adalah penting untuk sejarah seni bina, perancangan bandar, sains perubatan dan hak asasi manusia di Malaysia. Penyakit kusta adalah sebuah tragedi namun ianya datang dengan pelbagai pengajaran buat semua, terutamanya generasi muda, tentang kewajaran mengsegregasi manusia untuk berhadapan dengan penyakit. Pemaknaan dan nilai universal pusat koloni kusta Sungai Buloh hanya boleh difahami dan dihargai daripada keaslian tapak alam bina penempatan ini.

Petisyen ini dipelopori oleh Save Valley of Hope Solidarity Group dan disokong oleh Majlis Penempatan Sungai Buloh. Komen-komen di ruang ini akan membantu kami dalam perbincangan kami dengan Kementerian Kesihatan, Jabatan Warisan Negara dan Kerajaan Negeri Selangor.

Petisyen ini akan disampaikan kepada:

Kementerian Kesihatan Malaysia
Datuk Seri Dr. S.Subramaniam – Menteri Kesihatan Malaysia
Datuk Dr Noor Hisham Abdullah - Pengarah Kesihatan Malaysia

Kementerian Pelancongan dan Kebudayaan
Dato’ Seri Mohamed Nazri bin Abdul Aziz  – Menteri Pelancongan dan Kebudayaan

Jabatan Warisan Negara
Dr. Zainah Binti Ibrahim – Pesuruhjaya Tinggi Warisan

Kerajaan Negeri Selangor
Dato’ Seri Mohamed Azmin Ali – Menteri Besar Selangor.


1. Introduction

In 2007, the event of partial demolition of Sungai Buloh Settlement, officially known as National Leprosy Control Centre (PKKN), has stirred Malaysian citizens and NGOs to urge the Malaysian Government to preserve the settlement. Nine years have passed since the event and in February 2016, there were several media reports about the Ministry of Health’s plans and intention to demolish some historical buildings at the historic Sungai Buloh Settlement. These moves are regrettable and contradict to the objective of National Heritage Department to preserve and nominate the settlement as a National Heritage Site and UNESCO World Heritage Site.

According to media reports, the reasons given by the Ministry of Health to bulldoze the historical assets is due to some abandoned historical buildings in the settlement being illegally occupied by illegal immigrants for the past ten years. Moreover, the proposal to build 1,000 units of integrated quarters and the development of the National Centre for Infectious Disease Control will totally disintegrate this historical settlement, disrupt the former patients’ livelihood and horticulture activities, and will also destroy its natural setting and environment.

2. The Significant Socio-cultural and Outstanding Universal Values of Sungai Buloh Settlement/Leprosarium

2.1   The establishment of Sungai Buloh Settlement signified a new chapter in the development of leprosarium in the 20th century. It was claimed as the biggest leprosarium in the British Empire and the second biggest in the World. More importantly, Sungai Buloh Settlement was planned humanely as a modern human settlement, emancipating from the rigorous way of prison-like segregation. The settlement has provided every modern facility and opportunity for its residents. Sungai Buloh Settlement has been deemed as an educative, self-supporting, and a model living environment for outside world.

2.2   Sungai Buloh Settlement, perhaps, is one of the most important legacies of Garden City planning in the history of built-environment in Malaysia. The ideology was not only conceptually implemented but also practically and successfully worked as a self-supporting and self-sustaining human settlement, as suggested in the ideology, with clear zoning, open spaces, parks, public facilities, residential areas, community amenities, open fields and green belt for commercial agriculture.

2.3   Sungai Buloh Settlement is a unique institution integrating medical institution, human settlement, and rehabilitation centre as well as farm colony. It was planned as a medical and social catalyst to provide medical services, re-create social life, provide education and training, and form an agriculture community.

2.4   Sungai Buloh Settlement has developed into a matured human settlement with its own community and living culture for the last 86 years. The community has flourished in the settlement and developed it into a well-known horticulture settlement in Malaysia. Besides, its beautiful natural setting has been a haven for nature lovers, photographers and bikers to enjoy its environment.

3. Our Demands

3.1   Fully Preserved the Settlement
The authenticity and integrity of the settlement should be fully preserved and protected. Any new development in the settlement should first consider integrating, utilizing and restoring the old and abandoned buildings instead of demolishing them to replace with new buildings. However, the huge development of 1,000 units of integrated quarters and the National Centre for Infectious Disease Control in the settlement will totally destroy the settlement. To preserve the settlement for the sake of next generations, the Ministry of Health and the National Heritage Department should work together with Selangor State Government to find a better solution such as providing a new site for the new development.

3.2   Nominate as National and World Heritage Site
In recent years, the movement to preserve the history of leprosy and its legacies has been an important subject in the international discourses of leprosy. Sungai Buloh Settlement has been on this international loop and networking for the last few years.  The suggestion of linking Sungai Buloh Settlement with other important leprosaria around the world as a Transnational World Heritage Site has been discussed by academicians and NGOs. On the other hand, the National Heritage Department has stated their intention to nominate Sungai Buloh Settlement as a World Heritage Site and, prior to that, it has to be nominated in the National Heritage List. Therefore, the authenticity and integrity of the settlement should be fully protected.

3.3   Sungai Buloh Historical Park
The significant and historical position of Sungai Buloh Settlement is not merely at national level, it has been known as one of the important models of leprosarium and its research unit has once put the country in the world map of leprosy research. These historical assets can potentially be developed and integrated together with its existing natural resources and transform the settlement into an open museum or historical park. The purpose is for the public and young generations to understand about the nation’s achievement in the global history of leprosy, and at the same time, to appreciate the valuable cultural and historical landscape of Sungai Buloh Settlement. The best precedent to refer to is Kalaupapa National Historical Park in Hawaiii, where the former leprosy colony is part of the National Park today.

3.4   Protect Horticulture Activities and Protect Livelihood
The robust horticulture activities in the central section of the settlement have been the identity of the settlement. The identity perfectly portrays the initial idea of Garden City planning of the Settlement. The horticulture activities have been bridging the public to the settlement. More importantly, it reduces the stigma of the disease and provide livelihood to the community.  These public-community interactions should be maintained and the horticulture activities by the community should be protected.

3.5   Right to Preserve Legacies
The Sungai Buloh community, as the former patients, have spent their entire life in the settlement for the reason of public health policies.  Their rights as common citizens have been denied after being diagnosed with the disease. Besides enduring the painful experiences caused by the disease and treatments, they have to suffer from being separated from their parents and their own children for medical reasons. Every Sungai Buloh resident has his or her own memory and story. Every single structure, path, space, and building in the settlement contains its history explaining how the former patients lived, socialized, struggled, and their experiences under leprosy segregation policies. Their sacrifices should be commemorated and compensated with kindness and humanity treatments. Their rights to preserve and inherit their legacies should be granted indisputably.

4. Petition
The entire Sungai Buloh Settlement should be fully preserved and inherited in regards to its significant position and outstanding contributions in the development of modern leprosarium, medical science and history of leprosy. These legacies are important puzzles of the history of architecture, urban planning, medical science and human right in Malaysia. The tragedy of leprosy is a miserable event in human history provides valuable lessons to our younger generations, about the sense of righteousness in dealing with human segregation and diseases. The meaning and outstanding universal values of Sungai Buloh settlement can only be understood and appreciated from the authenticity of its living and built environment.

This petition is initiated by Save Valley of Hope Solidarity Group and supported by the Sungai Buloh Settlement Council. The comments will help us in our discussions and engagements with the Ministry of Health, the National Heritage Department and Selangor State Government.

This petition will be delivered to:

Ministry of Health
Datuk Seri Dr. S.Subramaniam – Minister of Health Malaysia
Datuk Dr Noor Hisham Abdullah - Director General of Health Malaysia

Ministry of Tourism and Culture
Dato’ Seri Mohamed Nazri bin Abdul Aziz  – Minister of Tourism and Culture

The National Heritage Department
Dr. Zainah Binti Ibrahim – Heritage Commissioner

Selangor State government
Dato’ Seri Mohamed Azmin Ali – Chief Minister of Selangor.






2. 雙溪毛糯麻疯病院的社會文化意義及特有的普世價值
2.1. 雙溪毛糯麻疯病院的成立標誌著20世紀麻疯病院發展的新篇章。她是英联邦国家中最大及世界第二大的麻疯病院。更重要的是,雙溪毛糯麻疯病院的規劃摆脱了類似監獄的隔離模式,完全採取人性化的现代管理。院區提供了院民現代化設施和居住空間。外界已經視雙溪毛糯麻疯病院為富有教育性、自供自足和拥有先进生活的典范。


2.3 雙溪毛糯是一個獨特的疗养機構,结合醫療中心,康复者居住区,復建中心和農作園地等。它結合醫療和社會催化作用,为院民提供醫療服務,重新創建社交生活,提供教育和培訓,以及成立農藝社區。

2.4 过去86年来,雙溪毛糯麻疯病院已经發展為成熟的人類聚落,並擁有自己的社區和生活文化。麻疯病群体在聚落中稳健的成长,蓬勃發展的园艺业也让这个病院闻名四海。除此之外,其美麗和自然景观成為大自然愛好者、攝影師和單車手享受其自然環境的天堂。

3. 我們的訴求

3.1 完整保留麻疯病院

3.2 提名成為國家與世界文化遗产

3.3 雙溪毛糯歷史公園

3.4 保護園藝活動,維護院民生計

3.5 传承文化遗产的權利

4. 徵求聯署








SELAMAT KEPADA UU DISABILITAS yang sudah dicatatkan di LEMBARAN NEGARA dengan no sbb: UU NO 8 Tahun 2016 LEMBARAN NEGARA Tahun 2016 No 69, TAMBAHAN LEMBARAN NEGARA No 5871.

SELAMAT KEPADA UU DISABILITAS yang sudah dicatatkan di LEMBARAN NEGARA dengan no sbb: UU NO 8 Tahun 2016 LEMBARAN NEGARA Tahun 2016 No 69, TAMBAHAN LEMBARAN NEGARA No 5871.

NAMUN belum juga di PUBLIKASIKAN oleh negara padahal katanya janji satu bulan !! SEMOGA