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Thema NASIONAL HARI DISABILITAS Tahun 2016 – Oleh Organisasi Disabilitas dan PEMERINTAH REPUBLIK INDONESIA

“Membangun masyarakat inklusif, adil dan berkesinambungan bagi penyandang disabilitas untuk indonesia yg lebih baik”

MEMBANGUN MASYARAKAT INKLUSIF  !!!

ADIL

BERKESINAMBUNGAN

BAGI PENYANDANG DISABILITAS

UNTUK INDONESIA YANG LEBIH BAIK

 

LAWmotion #22: DISABILITAS, BAGIAN DARI KERAGAMAN

Undang-undang Nomor 8 Tahun 2016 tentang Penyandang Disabilitas telah disahkan. Sekarang, tinggal bagaimana kita memastikan UU itu bisa diterapkan dengan baik. Salah satunya, kita perlu meninggalkan istilah “cacat” yang selama ini biasa digunakan dan menggantinya dengan “disabilitas”. Jika istilah “cacat” langsung menganggap orang yang anggota tubuhnya tidak lengkap sebagai orang yang tidak normal atau memiliki kekurangan, istilah “disabilitas” menganggap penyandang disabilitas hanya sebagai orang yang berbeda, layaknya semua lapisan masyarakat yang masing-masing memiliki kemandirian, keunikan, dan kemampuan yang berbeda-beda. Sebagai contoh, para penyandang disabilitas mengikuti Paralympic 2016, kompetisi olahraga, di Rio de Jeneiro, Brazil saat ini. Kapankah kita bisa melihat ini di Indonesia?

Sehingga, persoalannya bukan pada bisa atau tidaknya seorang penyandang disabilitas menggunakan suatu fasilitas, tetapi apakah sudah disediakan fasilitas yang bisa diakses oleh semua orang, termasuk penyandang disabilitas yang merupakan bagian dari warga negara.

Melalui video animasi “LAWmotion #22: Disabilitas, Bagian dari Keberagaman” ini, Pusat Studi Hukum dan Kebijakan Indonesia (PSHK) hendak menawarkan cara pandang baru mengenai disabilitas. Pada akhirnya, ini merupakan pemenuhan hak asasi manusia untuk semua lapisan masyarakat.

Silakan tonton LAWmotion # 22: Disabilitas, Bagian dari Keberagaman di: https://www.youtube.com/watch?v=cgzq3zIloPo

 

RUMAH RAKYAT-PIAGAM PERJUANGAN PROF SUHARSO (Sebagai Suatu REFLEKSI untuk KITA SEMUA)

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.

*•SALINAN :*
Indonesia
RUMAH RAKYAT

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 !

 

BAPAK PRESIDEN Republik Indonesia JOKO WIDODO SANGAT MEMPERHATIKAN KAUM DISABILITAS !

 

GPDLI MEMERLUKAN PARTISIPASI ANDA SEMUA !!!

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 : http://www.cbsnews.com/news/last-days-of-a-leper-colony/
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!

 

GPDLI Mengucapkan SELAMAT HARI RAYA IDUL FITRI 1437 H

 

MENJELANG 3 DESEMBER 2016 – HARI DISABILITAS INTERNASIONAL !!!

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