Disability data and the development agenda in Indonesia

At the heart of the Millennium Development Goals (MDGs) is poverty reduction and improved welfare for the world’s poorest people, measurable by social statistics. However, it is increasingly clear that progress in basic services aimed at malnutrition, education and income has bypassed persons with disabilities . As a result, world leaders have reaffirmed their commitment for the post-MDG era to leave no one behind , including people with disabilities.

Indonesia’s commitment to ensure that people with disabilities are included in the country’s development is longstanding. The government ratified the Convention on the Right of Persons with Disabilities (CRPD) in 2011. Prior to that, it enacted Law No. 4/1997 on Disabled People and set a one per cent disability quota for companies with more than 100 employees. In 2014, Indonesia passed a law to ensure more humane treatment of people with mental illness and intellectual disabilities, outlawing the common practice of shackling . As of 2015, Indonesia has 17 laws that cite the rights of people with disabilities.

Indonesia has approached disability inclusion as a cross-sectoral issue and enacted laws through the country’s medium national development plan. This approach could be the catalyst for including people with disabilities into the national agenda and post-MDG objectives. However, a sizeable challenge remains: ensuring accurate statistics and other data on disabilities. The lack of reliable data has serious implications for how Indonesia can tackle issues of disability in the post-MDG era.

A hazy statistical picture
Indonesia probably underestimated the number of persons with disabilities in its population. Official statistics from the United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) estimated that only 1.4 per cent of Indonesia’s population has a disability, but this number would appear disproportionately low compared to the Association of Southeast Asian Nations (ASEAN) averages. For instance, Thailand and Vietnam estimate that 2.9 per cent and 7.8 per cent of their populations have a disability, respectively. According to the World Health Organization (WHO), the international average regarding disabilities is around 15 per cent of the global population or one billion people. Using Thailand’s calculations as a low-end proxy would double Indonesia’s population of persons with disabilities to over seven million, while using the WHO measure would suggest that Indonesia has up to 37 million citizens with a disability. Either way, Indonesia’s official figure is dubious.

Our research for the National Program for Community Empowerment (Program Nasional Pemberdayaan Mandiri, PNPM) Special Program on Disability demonstrated that key government agencies collect data on disability using different methods and diverse disability criteria. This uneven approach affects data validity and usability. Furthermore, in general terms, people with disabilities are often omitted as respondents in population surveys. This omission happens even in many developed countries because the range of responses (based on individual disability needs and experiences) is too complex for survey researchers to collate and subsequently analyse.

Further, during our fieldwork, the staff at social services, education, health and labor bureaus in Java and eastern Indonesia stressed that inaccurate and outdated data slows their efforts to reach citizens with disabilities and improve basic services accordingly. This data weakness has undermined Indonesia’s efforts to make progress towards the MDGs in a way that includes people with disabilities. It is important to note that although the data gathered by local government and disabled persons organisations are comparatively more accurate and reliable, the central government questions its validity to justify budget decisions and needs assessments. Often, existing disability policy at the regional level must adopt and use official national data as mandated by the central government, even when that data does not reflect the real number and condition of people with disabilities at the district level.

People with disabilities slip through the gaps
If Indonesia cannot reliably count its citizens with disabilities, and let alone disaggregate that data, how can Indonesian policy makers set appropriate priorities regarding disability in national policy-making, such as those policies related to the MDGs? How can policy makers then act on those policies or measure the effects or progress of implementing such policies? These challenges become apparent when looking at the gaps around including people with disabilities in programs related to the MDGs for health and education.

The Government of Indonesia’s statistics suggest that nearly 25 per cent of people with disabilities live in extreme poverty. These individuals are more likely to experience poorer health outcomes and spend more on health care, yet they have limited access to adequate nutrition, clean water, reproductive health services, safe motherhood and general health information and services. In addition, misconceptions around disability and sexuality often lead to exclusion of people with disabilities from HIV information, prevention and testing.

Both development agencies and government increasingly recognise universal health access as an important component of improving quality of life. People with disabilities are often mentioned as a key subgroup that would benefit from such an approach given that they have historically been neglected. However, information about disability and health behaviour or health services use is scarce in Indonesia, which makes it very difficult to measure the specific experiences of people with disabilities in relation to the MDG targets.

Dibley and Budiharsana, in their article for this edition, point out that there have been improvements in child mortality figures. While these numbers are helpful for Indonesia as a whole to mark its progress towards the achievement of the MDGs, this data does not track disability. For example, it is unclear whether the marker for ‘child mortality’ includes children born with disabilities (which is then perhaps a compounding factor in their death). It is also unclear whether these figures include children who acquire disabilities at birth due to medical malpractice, or include children who acquire disabilities in early childhood due to illness or malnutrition. With regards to maternal health outcomes, there is, at present, no system that tracks mothers with disabilities. There is also no mechanism to track whether complications with pregnancy and childbirth are related to health factors faced by mothers with disabilities and/or the lack of appropriate disability-sensitive health services.

Similar gaps exist in measuring the extent to which children and youth with disabilities have had their educational rights met through the targets set for the MDG on education. According to the 2014 OECD report, Indonesia has shown a significant improvement in both education equity and performance as reflected in the Education For All strategy. Further, it has increased national spending by 20 per cent to meet the goal of universal primary education. Against the backdrop of decentralisation, the country has achieved 93 per cent literacy rate. However, the primary education attendance gap between children with disabilities and children without disabilities remains particularly wide at 60 per cent. To put this number into a perspective, a child with disability in Indonesia is seven times more likely to be absent from school.

Many children with disabilities do not attend school because of logistical (physical), financial and social barriers. What those precise barriers are and possible solutions remain little understood and under researched. Without further data on these barriers, it is impossible to develop realistic and practical strategies to ensure children with disabilities can go to school.

Considerations for the post-MDG era
In September 2012, the UN High Level Panel Committee and civil society, researchers, private sector, foundations and youth held an open dialogue to assess the progress of the MDGs and to devise a new ‘bold, visionary and courageous ’ action plan for tackling global poverty post-2015. Disability has a more noticeable presence in the post-2015 plans, but without accurate data about people with disabilities, questions still remain about the extent to which this new agenda will affect the disability sector in Indonesia.

Until now, people with disabilities have been excluded from many of the MDG-related development programs. The precise nature of that exclusion remains unclear given the hazy data that exists. Ensuring that people with disabilities have access to health and education services in Indonesia is complicated by complex administrative requirements, limited awareness, corruption, and physical and attitudinal barriers regarding disability. Resolving the finer details of these challenges will require better data determination in order to identify appropriate disability-sensitive development goals and implement appropriate mechanisms for achieving them.

Authors: Ekawati Liu and Lyla Brown

This article is originally published by Inside Indonesia

Membuka pintu pendidikan lebih lebar bagi siswa difabel di Indonesia

Hari Disabilitas Internasional yang diperingati setiap 3 Desember bukan hanya untuk mendukung penyandang disabilitas tapi juga hari untuk mengambil tindakan demi memastikan warga difabel mendapatkan haknya. Sebuah kolaborasi Indonesia-Australia meninjau apakah lembaga pendidikan di Indonesia, termasuk lembaga pendidikan Islam, membuka pintunya bagi penyandang disabilitas.

Pemerintah Indonesia telah berupaya mempromosikan pendidikan yang inklusif dan mudah diakses oleh penyandang disabilitas. Tetapi, siswa difabel membutuhkan komitmen lebih dari pemerintah dan masyarakat demi kesetaraan dan partisipasi penyandang disabilitas.

Kemajuan dalam hal akses dan inklusi
Hak penyandang disabilitas tercantum dalam Konvensi PBB tentang Hak bagi Penyandang Disabilitas.

Pemerintah Indonesia meratifikasi konvensi tersebut pada 2011 dan mengesahkan Undang-Undang tentang Penyandang Disabilitas pada 2016. Pemerintah dan masyarakat juga telah berupaya untuk mempromosikan inklusi penyandang disabilitas dalam bidang pendidikan.

Halangan-halangan masuk sekolah dan melanjutkan ke universitas juga telah dievaluasi. Ini termasuk upaya mengubah rancangan gedung sekolah agar mengakomodasi lajur khusus untuk kursi roda (ramp) untuk masuk ruang kelas. Kurikulum di sekolah umum dan sekolah Islam juga telah diubah demi meningkatkan partisipasi penyandang disabilitas di sekolah.

Perbaikan juga terjadi di luar sektor pendidikan. Sejumlah pemerintah daerah juga dilaporkan telah memulai perencanaan pembangunan yang inklusif untuk membangun infrastruktur yang bisa diakses orang difabel.

Masih banyak yang harus dikerjakan, tapi telah ada dukungan sungguh-sungguh untuk inklusi penyandang disabilitas di seluruh Indonesia.

Konferensi keragaman dan inklusi disabilitas
Dua lembaga Australia, Institute for Religion, Politics and Society di Australian Catholic University, dan Institute for Culture and Society di University of Western Sydney, telah bekerja sama dengan Fakultas Dakwah dan Komunikasi di Universitas Islam Negeri (UIN) Jakarta sejak 2016. Kemitraan ini bertujuan menumbuhkan sikap dan kebijakan yang inklusif di lembaga pendidikan tinggi Islam, madrasah dan pesantren.

Konferensi bertajuk Keragaman dan Inklusi Disabilitas di Masyarakat Muslim: Pengalaman di Negara-negara Asia adalah hasil dari kemitraan ini. Konferensi ini didukung oleh UIN Jakarta dan inisiatif pemerintah Australia, Program Peduli, yang dikelola The Asia Foundation.

Perhatian dari seluruh Indonesia mengenai isu ini cukup besar. Para pembicara termasuk akademisi, aktivis disabilitas dan masyarakat sipil. Konferensi ini mempertemukan cendekiawan dari berbagai disiplin, termasuk pendidikan, pekerjaan sosial, psikologi, hukum, studi kebijakan, dan studi agama. Maka pendekatan antardisiplin terasa kental dalam diskusi dua hari tersebut.

Isu-isu yang dipaparkan dalam konferensi termasuk diskriminasi yang masih terjadi, persepsi masyarakat yang negatif mengenai disabilitas, dan kebijakan yang diskriminatif. Konferensi juga menampilkan temuan para peneliti berkait praktik-praktik inklusi di tingkat komunitas. Isu penting yang didapati dari 52 makalah adalah kurangnya inklusi di bidang pendidikan.

Konferensi memilih fokus inklusi di lembaga pendidikan Islam dan ini memang disengaja. Pendidikan bermutu tinggi bagi penyandang disabilitas penting untuk memastikan mereka mendapat kesempatan kerja di masa depan. Perundangan-undangan di Indonesia memandatkan perusahaan untuk memberi kesempatan kerja bagi penyandang disabilitas berdasar prinsip non-diskriminasi. Pendidikan menjadi fondasi dari kesempatan kerja yang baik.

Manfaat pendidikan inklusif
Pendidikan inklusif merupakan dasar dari perkembangan kemampuan dan kapasitas penyandang disabilitas sehingga bisa bersaing dan dihargai di dunia kerja. Inklusi penyandang disabilitas di pendidikan tinggi mendorong sikap positif di komunitas terhadap penyandang disabilitas, partisipasi, dan inklusi sosial.

Pembahasan yang muncul dalam konferensi internasional memperlihatkan bagaimana disabilitas dan keragaman bisa menjadi jalan penting menuju menghargai perbedaan. Inklusi disabilitas mendorong dialog dan pembelajaran, memperluas pemahaman sosial akan hak, keadilan, dan praktik tanpa diskriminasi.

Disabilitas dan pendidikan Islam
Kolaborasi antara ilmuwan Australia dan Indonesia menelaah inklusi disabilitas di lembaga pendidikan Islam seperti di pesantren, madrasah, dan universitas Islam. Para akademisi juga menelaah pengajaran Islam, dari ayat Quran dan Hadis, berkenaan dengan praktik inklusif.

Para peneliti dan aktivis disabilitas Muslim di konferensi membahas kunci-kunci dalam pengajaran Islam yang mendorong inklusi, rasa hormat, dan martabat. Para penyaji makalah membahas dukungan positif untuk perbedaan dan keragaman dalam ajaran Islam. Ini termasuk peran iman yang mendukung pemenuhan hak dalam tindakan sehari-hari.

Isu inti yang juga diungkapkan di konferensi adalah mayoritas penyandang disabilitas di Indonesia tinggal di perdesaan. Ini tantangan sebab madrasah dan pesantren di perdesaan biasanya kurang dalam fasilitas dan sumber daya. Jarang ada pesantren atau madrasah yang memiliki fasilitas untuk penyandang disabilitas.

Konferensi ini memfasilitasi berbagi gagasan, pengetahuan, dan keahlian dari seluruh Indonesia. Para aktivis mengungkapkan pengalaman mereka dan menunjukkan cara baru untuk mewujudkan inklusi disabilitas di Indonesia. Gabungan antara pengalaman pribadi dan riset menekankan pentingnya kebijakan pemerintah dalam memperluas inklusi penyandang disabilitas, terutama di bidang pendidikan. Para pembicara dan peserta konferensi menekankan dengan inklusi pendidikan maka sikap masyarakat terhadap disabilitas bisa lebih positif.

Peserta konferensi menyetujui kolaborasi penting ini harus dilanjutkan. Rencana untuk kolaborasi lebih jauh bahkan telah mulai dibicarakan. Komitmen bersama antara aktivis dan akademisi, yang didorong aspirasi para penyandang disabilitas, akan melempangkan jalan ke perubahan kebijakan. Konferensi ini berakhir dengan dibentuknya Jaringan Riset Disabilitas Australia-Indonesia untuk membangun momentum demi perubahan sosial.

Artikel ini pertama kali terbit dalam bahasa Inggris

Penulis: Dr Dina Afrianty and Dr Karen Soldatic

Artikel ini telah dipublikasikan oleh The Conversation

People with disability: locked out of learning?

Indonesian students with disability are challenged by inadequate support and lack of accessible teaching and learning facilities. Photo by Tommy Kristiawan Permadi.
Indonesian students with disability are challenged by inadequate support and lack of accessible teaching and learning facilities. Photo by Tommy Kristiawan Permadi.

Indonesia has made good progress towards increasing enrolment in higher education but it still has a long way to go to improve equity – especially for people with disability. Stigma, physical barriers and a lack of supportive policies and academic services continue to keep most Indonesians with disability locked out of higher education. To have any hope of earning a degree they need support from families, the community and the government – and a huge amount of personal determination.

Zilfathanah Arranury, or Ifha, is a 25-year-old teacher at a special school in Gowa in South Sulawesi, and is deaf. Of the estimated 36,000 people with disability who live in Makassar, she is one of the very few with a bachelor’s degree. Although Ifha was able to attend university, she says she was reluctant to apply because she felt embarrassed about attending classes with non-disabled peers. It was her father, a lecturer at Alauddin State Islamic University (UIN) in Makassar, who convinced her to try. After two attempts at the entrance exam, she was accepted into Makassar State University (UNM), the first ever student from her special school to make it.

Ifha’s anxiety is common among people with disability. It is an unintended consequence of the segregated special school system introduced in 1967.  Most children with disabilities go to special schools for their primary and secondary education. Although the schools were created to provide an avenue to access education, the quality of these schools is often poor, and minimal efforts are made to prepare students to study alongside non-disabled students.

Some Indonesians with disability attend state high schools. Hamzah, a 32-year-old blind activist, also from Makassar, says he often had to put up with negative comments from teachers who complained about his performance in class but never offered additional support (extra tutorials, for example) or adapted materials or equipment to help him participate. While Hamzah was tolerated in the state school system, almost no efforts were made to ensure his experience was inclusive.

Despite a lack of encouragement from his teachers, Hamzah was adamant about pursuing higher education like his non-disabled peers, and dreamt of becoming a teacher at an Islamic school. But Hamzah’s enrolment was refused in 2003 by the education (tarbiyah) faculty at Alauddin UIN. He was told that a blind man could not become a teacher and the institute could not accommodate him. He was eventually accepted into the English literature department at UNM, which Ifha also attended.

Hamzah’s experience is far too common among people with disabilities. Until last year, the National Higher Education Entrance Exam (SNMPTN) excluded participants who were deaf, blind, physically disabled or colour-blind. Following a national outcry, this was changed. Yet students with disabilities remain challenged(link is external) by inadequate support and a lack of accessible teaching and learning facilities in Indonesian higher education.

Without help from the educational sector, family support becomes critical. It played a significant role in both Hamzah’s and Ifha’s transition to higher education. Other children are not so lucky. Although attitudes are improving, many Indonesian parents consider children with disability a burden on the family. Education is not seen as a pathway for their children to participate in employment or public life.

More than a decade ago, the Indonesian government included provisions on the need for education for people with special needs in Law No. 20 of 2003 on National Education. It eventually ratified the UN Convention on the Rights of Persons with Disabilities in 2011 (through Law No. 19 of 2011). This obliges it to provide people with disability with access to education, employment and health care. It was not until the Ministry of Education and Culture published Regulation No. 46 of 2014, however, that requirements for accessible higher education were spelled out in greater detail.

 

UIN Sunan Kalijaga, in Yogyakarta, is a leader in inclusive education. Photo by the Centre for Disability Studies and Services
Sunan Kalijaga UIN, in Yogyakarta, is a leader in the provision of inclusive education in Indonesia. Photo by the Centre for Disability Studies and Services (PSLD), Sunan Kalijaga UIN.

 

Disability inclusive education in Indonesian Islamic education institutions

Contrary to popular Western belief, the Indonesia Islamic education system and its schooling institutions have remained an important counter institution to processes of colonisation, while adopting elements of western education system. Emerging in the late nineteenth century in a form of traditional institution known as Pesantren in Java and Kalimantan, Dayah in Aceh and Surau in West Sumatra, they provided a point of resistance first to local emperors, and then to the colonial Dutch educational system.