Fund raising for Sita, born with Rubella syndrome resulting in profound deafness.
Penggalian dana untuk Sita, lahir dengan Rubella Syndrome yang menyebabkan gangguan esktrim pendengaran.
This is the story of the second child of my friend Made Nagi, a budding photojournalist in Bali: “Sita was diagnosed at birth with Rubella Syndrome. This syndrome was responsible for two disorders, one to her heart and the other to her hearing. During the first two years we focused on her heart problems, which in the end the doctors said was no longer a major threat.
However due to her poor hearing Sita was not able to speak at four years of age. The treatment and therapy we tried for years brought no palpable change for Sita. After long deliberation we decided to go with a cochlear implantation. With the help of many friends we could afford this procedure. On the 22nd of August 2014, after a seamless five hour operation, Sita gave a positive response to the implant. This month the “bionic ear” was activated as she has recovered from the operation.”
Sita will naturally require intensive, ongoing therapy so that it can function properly and that she can get the optimum benefit from it. At the moment. after a period of nearly a week the sensitivity of her ‘bionic ear’ has been adjusted up to level three (of four) and she is responding to sounds. Now comes the task of teaching her the meanings of sounds and speech in general.
Naturally there will be ongoing expenses – therapy, batteries, maintenance of the equipment (for example one of the connector cables is already broken, they are necessarily fragile but cost Rp 700,000 each to replace). And then if there is any other damage that occurs after the 3 year guarantee period, the current replacement cost is IDR 100 million.
Rio Helmi Photo Gallery is setting aside a percentage of all print sales during September, October and November as a donation to Sita’s therapy and equipment maintenances.
Ini kisah anak kedua teman saya, wartawan foto Bali, Made Nagi: “Sita lahir dengan didiagnosa mengalami Rubella syndrome. Syndrome ini membawa dua gangguan bawaan yaitu kelainan jantung dan pendengaran. Dua tahun pertama kami konsentrasi untuk mengatasi masalah kelainan jantungnya, yang akhirnya oleh dokter didiagnosa hanya masalah yang tergolong ringan.
Dengan kemampuan mendengar yang sangat lemah, sampai umur 4 tahun Sita belum juga mampu untuk bicara.
Treatment dan terapi selama beberapa tahun tidak memberikan dampak yang berarti untuk Sita.
Setelah pertimbangan yang cukup lama kami memutuskan untuk memeberikan kesempatan Sita untuk mendengar melalui prosedur cochlear implantation. Sukurlah berkat bantuan banyak teman kami dapat melaksanakan prosedur ini. Operasi berlangsung 22 Augustus 2014 selama 5 jam tanpa hambatan dan Sita memberikan respon yang positif pada implan”.
“Bionic Ear” kini sudah diaktifkan setelah Sita sepenuhnya pulih. Tentu saja Sita harus melakukan terapi yang intensif dan disiplin untuk membuatnya berfungsi dengan baik dan Sita mampu memanfaatkannya dengan optimal. Kini, setelah satu minggu dipasang, alatnya sudah disetel ke tingkat kepekaan 3 (dari 4) dan Sita sudah respon terhadap suara. Tentunya sekarang mulailah pekerjaan mengajar Sita arti dari suara, kata, dan bahasa umumnya.
Mengenai biaya Rp67jt yang dikeluarkan untuk operasi dan USD 28000sudah tertutup dengan bantuan teman dan kantor. Namun kini masih ada biaya ke depan – terapi, baterai, maintenance. Contohnya satu kabel konektor untuk alat itu sudah rusak (karena memang riskan dan sering harus diganti) seharga Rp 700rb, dan lain sebagainya. Belum lagi kalau kerusakan alat terjadi setelah garansi habis (3 tahun) – harganya Rp 100jt.
Rio Helmi Photo Gallery akan menyisihkan sebagian dari hasil penjualan semua foto selama September, Oktober, dan November untuk disumbangkan untuk keperluan terapi dan maintenance peralatan Sita.
originally published in the Jakarta Post’s supplement, Bali Daily as part of a ‘conversation’ between Made Wijaya, Diana Darling, and myself under the title of “I Love Bali – Handling the DOuble Edged Sword of Adat”
Adat is a double edged sword. On the one hand if it is used in the service of the well being of members of the community it provides structure and strength; on the other hand if it becomes an ideal which dictates that it be served mindlessly, it becomes a tool for the wily to manipulate to their own benefit.
Let’s get it straight: Adat is a social convention, a community contract. Adat is no more sacred than constitutional law in a democratic process. It’s not the sacred utterance of a prophet, for example.
Yet adat has been used as an excuse to avoid adhering to a range of things from human rights to environmental responsibility. And worse, there have been many documented cases where adat was the premise for violence. Anyone who has lived closely enough to Balinese society know this. To put it into context: with few exceptions, outside of the traditional dictates of adat, the sense of civic responsibility in Bali now is at an all-time low. Community money is corrupted. Ceremonies regularly disrupt and reroute major traffic arteries “because they can”. People dump garbage wherever they want. One Desa Adat near Denpasar has even allowed part of their Pura Dalem’s land in the mangrove to be used for an illegal dump. Another Pura Dalem in Mengwi appears to be using garbage for landfill. In Ubud the community garbage trucks having been dumping the trash in an illegal site in a ravine in Pejeng. Forests and rivers are desecrated. People behave selfishly.
Drivers are inconsiderate on the roads. 99% of Balinese are not interested in helping unfortunate fellow Balinese who are not in their Banjar or Desa Pakraman or even clan. The Pecalang (adat “policemen”, no female pecalang so far) in Ubud chase off beggars from Muntigunung whenever they can. The only group helping this poverty stricken Balinese region is driven by Swiss citizens – not by any wealthy Balinese communities looking to give their less fortunate bretheren a leg up. And let’s not start on universal human rights.
In answer to Diana’s statement that expressing an opinion on adat is like judging another person’s mother, sure. But what would you do if you saw your neighbor’s mother stabbing her child with a knitting needle? Am I, as an Indonesian citizen living in my own country, not allowed to state any opinions on the culture of an island on which I have resided for more than three and a half decades? Should I succumb to a romanticized view?
If I live here and am committed to being here, pay my taxes, penanjung batu etc, I do feel that I am part of the situation. Obviously it is not my place to lead any charge on the establishment of adat if indeed any frontal approach would lead to any positive result. However I feel I certainly should have the right to express my views – that’s how it works in the Petri dish of culture – even if no Balinese heeds it.
It’s all well and good not to judge another’s mother, but it so happens that the “other’s mother” spends a lot of time judging ‘us’. In quite a few Desa Pakraman ‘outsiders’ living in their boundaries are subject to very high tithes which really amount to shakedowns. Outsiders are never rarely accepted completely as equals within the community though of course those who have married in are accepted by their families. To be sure it is a two way street with many expats just wanting to “Ibiza-nize” Bali with no sense of context at all. It’s a strange dance.
In truth there are Balinese who are forward looking, caring and engaged in projects focused on bettering the minds and welfare of their brethren. For example the late AA Made Jelantik, the late Ibu Gedong Oka, architect Popo Danes, poet Ketut Yuliarsa to name just a few. But these are largely Bainese who have been well educated and have been exposed to the outside world in deeper ways. It boils down to a higher standard of education and more universal values. And none of their activities were directly supported by adat.
Adat is obviously something which is important – a system by which the community is held together for acitivities for the common good. But it has to adapt and change in this century just as it has throughout the centuries past. Adat was never static: it is a myth to think that Balinese adat has been the same all this time. Its implementation requires more transparency, checks and balances. Yes change has to come from within, but it will come as a result of interaction with new ideas, fresh views. Adat has many things going for it but it must evolve simply because the environment in which it is is no longer – and will never again be – the same.
Rio Helmi, aka I Belog, has been stuck in Bali for decades and doesn’t seem to have any other place to go to.
Rio Helmi (originally posted on the Huffington Post)
In the first 8 months of 2011 alone, the Bumi Sehat foundation, set up by CNN Hero Robin Lim in Indonesia, has provided compassionate pre and post natal care for 20,500 mothers, as well as delivered 400 babies. Many of these she has either cared for herself or overseen their care, sometimes even by phone to remoter parts of Aceh.
Impressive as that number may seem, midwife Robin Lim reminds us that every 15 minutes around the world, 23 babies die during birth, 28 are stillborn, and 86 infants under 1 month old die of various causes. She also reminds us that there are many mothers who die in childbirth:
“They are dying in the prime of their lives, doing the most natural thing in the world: having babies. Nine hundred and eighty one mothers a day: imagine if two 747’s jet planes full of passengers, (832 people,) fell out of the sky every single day. Now wouldn’t that be front page news?”
In truth these numbers are conservative owing to a lack of effective data collection around the world. She points out that Indonesia itself has a surprisingly high mortality rate – surprising because the medical community here works hard, but they are up against bad nutrition that leads, for example, to hemorrhaging. Robin admits to being obsessed with the United Nations Millennium Goals of reducing child mortality, improving maternal health and combating aids.
However it’s not just the numbers that make Robin passionate. Her obsession with compassionate birthing, done as naturally and lovingly possible, is a very personal one. Twenty one years ago her younger sister died of complications during pregnancy from hypertension related to medical interventions beginning in her youth. This was in the USA, a nation which spends more on pregnancy and birth technology than any country on earth.
It lit a fire under her that was still burning when she first arrived in Bali two years later. Life in the hills around Ubud was basic then, and maternity care in the villages was inadequate, to say the least. Dealing with her own pregnancy and helping other women around her finally drove her to found the Bumi Sehat Foundation in 1995.
Robin not only wanted to provide a natural, healthier and more holistic alternative, but also to provide a service for poor villagers who simply could not afford proper maternity care. She wanted to do it in the villages “with the village people”. The results are tremendous, and it does not go unappreciated by the many she cares for. Said one village mother in an interview earlier this year:
“I do not have money, and I tell my friends to also come here. I wish there were more people like her to lift up the suffering of the poor people.”
Yet that same fire that drove her initially also singed her relationship with local modern medical practitioners. Despite early advice from a long-term expat working in national health care to “work with existing systems and improve them from within and not do an end run”, Robin set out very much on her own track. A number of misunderstandings on both sides of the divide created unpleasant tensions.
It was perhaps the fall out from this period that finally brought her around to reaching out to the Indonesian medical community. But it was also through the agency of an Indonesian doctor, Hariyasa Sanjaya, that Robin’s transition to fruitful cooperation with the medical community became more complete.
When Hariyasa came back to Bali in 2006 after a stint in Australia he was struck by the unusually high percentage of cesarean births here: up to 50%. Once a staunch critic of Robin who proclaimed her a crank, on his return Hariyasa had something of an epiphany about “the stiffness and the arrogance” of the medical community whose ‘evidence-based’ mentality seemed to completely ignore the thousands of years of experience-based lore that existed heretofore. He saw a need for the medical community to give a greater place to the power of nature: “after all, women have been giving birth for thousands of years!”.
On the other hand, he admits he felt that Robin’s back to nature stance seemed uncompromising to the medical community at large. Her vocal championing of water-birthing, the use of natural herbs and homeopathics, all of these and more seemed outlandish to them. While Hariyasa acknowledges that a doctor does need a certain amount of ‘negative thinking’, for example anticipating problems in surgery, he now sees a middle way:
“Robin was a somewhat controversial figure when I finally met her, but I saw in her three things – clear understanding, a strong conscience, and courage. Now she has learned to compromise on things which are not essential, not fundamental, in order to achieve a greater good. That’s a sign of maturity. She can now take others’ viewpoints on board and consider them. It’s important to ‘go back to nature’ but it’s also important to ensure the patient’s safety.”
Robin welcomed Hariyasa’s timely positive interest in her methods. Years ago, as she was featured more and more in the media, some of her comments, in particular her criticism of the medical institutions, had irked midwives and doctors in the regency of Gianyar in Bali. They had pushed the health department to look into her practices. Dr Hariyasa’s interest drove him to investigate waterbirths. The positive conclusions of his study helped to calm the storm.
Nowadays in Bumi Sehat’s project in tsunami-stricken Aceh, traditional midwives in remote areas work in tandem with the medical community, keeping in touch with mobile phones provided with special hand chargers that don’t require electricity. Robin herself now readily acknowledges how hard the medical community in these remote areas works, and how important it is to be inclusive. It is becoming a two way street: in Bali, Dr Hariyasa has even referred patients to her from the clinics he works in.
Today Robin has been nominated as one of the CNN heroes who are candidates to become “Hero of the Year”, and the voting is soon coming to a close. At stake is a grant that would provide much needed funds to help her rebuild her clinic. Discussing her ‘hero’ status, Dr Hariyasa sees Robin as “a rock” and yet:
“She has learned through the experience of conflict and adversity. This is extremely important. Every great person must have the courage to acknowledge their limits, then they can go forward.”
Robin herself says she has stopped tilting at windmills:
“I guess I got older and maybe a little wiser. I figured out I could stop offending people. By liking myself enough I could speak with real love in my heart to people, not just with saccharine words”.
Perhaps this is the real mark of a hero: the ability to acknowledge one’s limits and shortcomings, and then strive to go far beyond them.
My article in the Huffington Post
Senja di persimpangan bundaran jalan arterial kawasan Kuta itu sedemikian ruwet sehingga mudah memahami kenapa julukan “Simpang-Siur” sudah lengket dari tahun ke tahun. Disini hampir setiap saat rame, dan sinar lampu stop-an merah berarti ‘jalan’ bagi anak-anak yg berbaju lusuh. Mereka menyusuri mobil-mobil mewah dengan tangan terulur, menunggu uluran kembali dari penumpang-penumpang yang berdiam diri dibelakang kaca jendela. Anak yang lahir di desa tandus di balik gunung nun jauh ke timur, bumi yang tidak punya kasih, dipaksa bercekeran di aspal. Mereka memahami kota dari perspektif yang tak ternyana oleh para perencana tata kota.
Bandar yang turun tengah malam untuk mengumpul duit mereka pun tidak terlalu repot berkasih sayang. Jujur kata, dari sekian ribu pengemudi dan penumpang pun yang berhenti di lampu stop-an itu, sedikit yang benar-benar memperhatikan anak-anak itu, apalagi memikirkan nasib mereka, dan mungkin lebih sedikit lagi yang bertanya “Bagaimana ini bisa terjadi?”. Toh anak-anak itu adalah rang terendah pada tangga urban baru di Bali yang semakin sesak diinjak-injak, perkotaan yang semakin mendesak manusianya untuk membela kepentingannya masing-masing.
Memang selama tiga dasawarsa terakhir Bali menjadi rebutan, antara orang Bali, antara pendatang dari pulau lainnya di Nusantara, antara para expat yang menikmati “Paradise”. Ironisnya lama-lama bukan “paradise” yang menonjol tapi “parasite”. Saya yakin bahwa pernyataan ini akan tidak enak didengar, terutama oleh penduduk yang mencintai pulau ini. Namun kalau kita telaah kata ‘parasit’ ia adalah bentuk kehidupan yang tidak mengenal “co-dependency” tapi hanya “dependency”. Bentuk kehidupan ini akan hinggap dimana ia bisa menghisap zat-zat yang dibutuhkannya, tapi tidak membalas budi alam bentuk signifikan. Dalam bentuk ekstrimnya, ‘tuan rumah’nya sang parasit bahkan bisa terhisap kering habis, mati tercekik.
Pola pemikiran parasit tidak melihat langkah lebih jauh dari sekedar kebutuhan hari ini. Ketidakmampuan memandang ke depan serta tidak memahami kepentingan bersama berakibat fatal, dan sesungguhnya adalah pola biadab. Anak-anak yang dikorbankan demi keuntungan orang tua adalah gejala infeksi parasit yang paling parah. Ada juga perilaku kita yang tidak senyata itu tapi tetap juga tindakan yang saling merugikan – contoh sederhana menyerobot antre, tidak bisa mengalah sejenak di perempatan lalulintas, dan sebagainya yang akhirnya membuat kesemrawutan. Daerah urban seolah menjadi tambang emas liar.
Saya ragu mengatakan bahwa ini adalah sifat hakiki manusia Indonesia moderen, saya lebih cenderung berpikir ini terjadi karena kita telah mengabaikan langkah penting dalam perkembangan urban dan masih bisa dikoreksi. Dalam desakan luar biasa yang terjadi kini di Bali (menurut sensus 2010, ada wilayah di Denpasar yang kepadatan penduduknya melebihi sembilan ribu lima ratus jiwa per kilometer persegi) banyak yang tidak sengaja bahkan tidak sadar menjadi parasit. Pola-pola kemasyarakatan lama terbengkelai, pola baru tidak terbentuk. Inilah keluhan yang terdengar saat diskusi tentang urbanisasi Bali baru-baru ini yang diselenggarakan sehari setelah pembukaan pameran foto ‘Urbanities’ .
Dalam diskusi tersebut dua tokoh ‘opinion-maker’ Bali, yaitu wartawan kawakan Bali Wayan Juniartha (“Jun”) dan penulis kolom Obrolan Bale Banjar di harian Bali Post, Made Sudira (“Aridus”), menunjuk hilangnya tokoh-tokoh panutan lama, baik Hindu Bali, Muslim maupun yang lainnya, sebagai faktor yang turut memperparah ketegangan antar kelompok masyarakat yang kini terjadi.
Menurut Jun, dengan adanya perubahan tatanan sosial (kelas menengah baru dsb) serta masuknya elemen jurus agama didikan luar (bagi Hindu dari India, bagi Muslim dari Pakistan dst) generasi muda telah melupakan kode-kode interaksi antar golongan, antar etnis, antar agama. Terlupakan sudah bagaimana kerajaan-kerajaan Bali mempunyai hubungan khusus dengan kaum pendatang. Di Karangasem, misalnya, kampung-kampung Muslim justru membentengi puri. Mereka bahkan ikut mengamankan dan menjaga kebersihan lingkungan pura tempat sembahyang orang Bali. Sebaliknya ongkos naik haji mereka ditanggung oleh raja. Di Denpasar kaum Bugis pun dulu punya perjanjian khusus dengan Puri Pemecutan.
Sudira menekankan kurangnya komunikasi dan pengertian tentang kepentingan antar masing-masing kelompok. Dulu pada zaman ORLA dia turut membentuk organisasi informal terdiri dari pemuda-pemuda dari berbagai golongan etnis maupun agama untuk membentengi ekses-ekses kekerasan yang terjadi pada pertengahan tahun 60an.
Sudira menunjuk bahwa kini situasi sudah beda, identitas orang Bali yang masih sangat berakar pada pelaksanaan adat yang sangat memakan waktu hingga parameter kegiatan mereka sulit dicocokan dengan kondisi moderen. Kepentingan bersama semakin sulit ditemukan – namun ironisnya kebanyakan pihak pendatang baru berada di Bali justru karena bagi mereka kebudayaan setempat melahirkan suasana ekonomis yang menjadi ‘gula’ untuk ‘semut’.
Senada dengan itu seorang Ibu asli Bali yang lama merantau ke Jakarta, mengaku shock saat kembali bermukim disini, “semua sudah demikian garang, perilaku bahkan menjadi lebih keras ketimbang Jakarta, dan Bali seolah tinggal komoditas untuk dijual”. Bahkan Pino Confessa, seorang seniman teater kelahiran Itali yang sudah puluhan tahun bermukim di Bali dan sekarang menjabat sebagai konsul Itali disini, berpendapat bahwa ini semua akibat mitos-mitos komersil dan TV yang telah menggantikan mitos-mitos lama “Masyarakat sekarang bengong dengan sinetron..”.
Di pihak lain, seorang pelukis pendatang dari Jawa yang tinggal di Kuta, Pandji, merasa bahwa sah-sah saja kalau pendatang yang sudah punya ‘watak urban’ dapat meraih kesempatan-kesempatan yang dilalailkan oleh penduduk setempat. Ia malah bertanya, kenapa para pendatang kelas ekonomi rendah yang bekerja keras mendukung ekonomi harus selalu dihasut, contohnya penggerebekan tengah malam yang dilakukan oleh pecalang dan sebagainya. Dengan membagi pengalaman-pengalaman langsung, masing-masing kelompok sempat saling membuka mata akan kegentingan situasi masing-masing.
Tentunya saat diskusi ada pertanyaan mengenai pembangunan fisik – seorang mahasiswi planologi berkomentar tentang daerah yang menjadi langganan banjir setelah pembangunan, ada juga yang menunjuk kurangnya lahan sebagai pemicu – observasi yang valid, namun tetap terjadi suatu konsensus bahwa interaksi sosial berbagai unsur masyarakat tak bisa diabaikan sebagai faktor penentu dalam perencanaan kota, dan interaksi inilah yang paling menentukan masa depan daerah urban Bali. Keadaan Bali tidak bisa disamakan dengan perkembangan daerah atau negara lain dimana kesepakatan lebih mudah tercapai. Di Bali revolusi agragris, industrial, ekonomis dan teknologi terjadi serempak – tidak heran kalau terjadi pergesekan yg merugikan. Konsensus dari diskusi itu juga mempertegas bahwa tidak bisa mengharapkan pemecahan dari pemerintah, dari aturan baru, dari lembaga-lembaga.
Yang dapat saya simpulkan dari acara tukar-pikiran ini adalah bahwa masyarakat madani sekarang harus lahir dari diri kita sendiri, melihat bahwa tokoh-tokoh panutan yang kuat kini absen. Kini kita yang harus bisa mengolah jiwa dan raga menjadi jaringan komunikatif yang saling mendukung, yang saling membantu mencari jalan menghindari pola parasit – membentuk pola masyarakat madani bersama yang lintas etnis, agama, dan kelompok lainnya tanpa mengancam identitas masing-masing.
Kini pola demikian tidak semata harapan abstrak. Kita memiliki berbagai kondisi yang mendukung, solusi yang positif semakin mudah di akses dan dibagi dengan bahasa yang lebih universal, apalagi dengan media internet. Sebagai contoh, baru-baru ini di India masyarakat madani berhasil memaksa reformasi pemerintah terhadap korupsi dalam tempo 4 hari. Bagi penduduk Bali, menjadi masyarakat madani adalah sesuatu yang dapat tercapai. Tinggal kemauan dan kecerdasan yang lahir dari ‘sharing’.
Rio Helmi / Bali 19 April 2011
We walk through garish corridors haphazardly hung with children’s paintings. By local standards it’s a big house with a big kitchen, and although it’s on the edge of whatever is left of Denpasar’s ricefields, there is no garden. Ibu Putu Etiartini introduces me to ‘her’ children.
One of the young girls has a freshly bandaged foot and is on crutches.Buoyed by the friendly atmosphere, I blurt out “Hey what happened to you?” – only to realize that her right foot is missing. In the matter of fact, practical way that Balinese can sometimes assume, Ibu Putu glosses over what I hope is my concealed mortification, explaining that the girl had to have her foot amputated. Apparently her foot, twisted at birth, had developed a infection from a cut she got as she hobbled through the streets of Kuta begging barefoot. Gangrenous, it was left unattended.
In truth, all of these kids have been left unattended. On the streets in the urban sprawl that now engulfs Denpasar, Kuta, and Sanur, their Fagin-like minders appear a couple of times a night on shiny new motor bikes to collect the money from their grubby young charges. Parents get some of the cut but often stay out of the way, at home on the other side of the island. The children are left to their own devices. This smiling young girl who now has no right foot and has had several operations (and more to go) is one of the lucky ones – Ibu Putu found her and brought her under the care of the YKPA foundation which she founded for street children in 2005.
Ironically, despite the fact that the parents of these children so blatantly allow their children to be exploited, YKPA legally still has to convince them to give permission to the foundation so their children can get the care and education they never would receive otherwise. Even more ironic are the cases of two of their recent charges, who, because of having been taken off the street no longer provided an income for their unemployed parents – and as a result the parents revoked their permission to have them kept at YKPA.
Part of the issue is desperate poverty brought on by the aridity of the northeastern tip of the island. Another part is the cold-hearted mafia that has developed the system that takes advantage of the lack of education and effective government welfare nets – from the point of view of the parents it can look like the simplest solution. But overwhelmingly it is the willingness of the majority, perhaps too busy with dreams of new motorcycles or even perfect holidays, to simply ignore what is going on around them.
Poverty has also taken its toll in the villages in the Batur caldera. Pande Putu Setiawan has been exposed to the harsh realities of life here since his youth, through the work of his father, a paramedic who devoted nearly his entire life to providing basic health care to the impoverished villages in the Kintamani region. Prompted by his father’s example, Pande decided to set up the Komunitas Anak Alam.
With a primary focus on providing education to the children of these villages, the group of young volunteers Pande leads are dedicated to providing the kinds of opportunities that many of the children, especially girls, would never have even dreamed of. These volunteers, students and young budding professionals, often dig deeply into their own pockets and happily sacrifice their own time. Though Kintamani is a major tourist destination promoted by, amongst others, the government, little evidence of the dividends filters into the villages of Songan and beyond.
Yet this is not all simply a case of a lack of modern sense of civic responsibility. Nor is it just the abject failure of the social services department to do something more meaningful than promise paltry sums which often enough don’t even get disbursed (the average sum per child per day promised to various orphanages is about Rp 3000, or 30 US cents). There is a collective shrug when the subject of the poverty-stricken in these areas is discussed – “these people have been begging for centuries, it’s their way” says popular local wisdom
Harsher still are the effects of personal shame. Social stigmatization, once set in, is a difficult stain to erase in a deeply conformist and communal society. Once one falls into the margin, it takes a lot to stand up and be counted amongst the smiling.
This is not something new which has sprouted within the ranks of the new arriviste bourgeoisie. Along with the many great qualities that have dazzled visitors to the island since the 18th century, there has always been something of a dark, fatalistic side to traditional Balinese culture. One brutal example of this deep sense of stigma is that which attaches itself to any family with handicapped children. Until as recently as a decade ago many of the island’s handicapped simply never left their compounds – perhaps loved at home, but hidden away from the public eye.
When the late President Gus Dur held a meeting of the handicapped ten years ago at the Grand Bali Beach, many who attended at his insistence had never left their homes before. Not a few had no formal schooling. “I was stunned and excited to meet so many others in a similar situation. A year later, missing them terribly, I decided to get in touch with them all.” says Putu Suriati – a victim of polio who got her first wheelchair as an adult from American Judy Slatum.
That started the ball rolling. Soon, with the aid of an Australian confined to a wheelchair, Vern Cork, the group turned into a collective, and eventually they formed a legal foundation, Yayasan Senang Hati. Education and empowerment feature large on their agenda. Supported by donations and some of their own efforts at sales of arts and crafts, and a variety of activities, what really shines through is the sense of pulling themselves up by the bootstraps.. “Several of our graduates are now working in hotels on the islands” the organizers told me proudly.
Despite the evident good that YKPA, Kommunitas Anak Alam and YSH have done and are doing, even today government and Balinese society support for these two desperately needed programs remain sporadic at best. They mainly survive on donations from individuals.
Yet they remain inspired to keep at it. These stories have come out of the dark closet of society’s denial. Street children, impoverished villagers and the handicapped, denied of education in their own homes, have responded to schooling, education, special courses, and come out shining. Behind each one of these stories is a fierce sense of personal dedication, a defiance of the so called “natural order of things”, and the awareness that there is nothing that can stop you if you have the will.
The real stigma lies with a society and a political system that cares little for its needy, with a government which pours its attention into an industry of luxury and leisure whilst ignoring the dirt poor and the unfortunate. As elements of our society, at least we can change that. As individuals we can be aware and can care. Helping those who already want to help themselves is the least we can do.