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GLOBAL PARTNERSHIP FOR ZERO LEPROSY – Menjelang LEPROSY CONGRESS di MANILA September 2019

About the Partnership

The Global Partnership for Zero Leprosy is a coalition of people committed to ending leprosy, also known as Hansen’s disease. The partnership includes the Novartis Foundation, the World Health Organization (WHO, as an observer), the International Federation of Anti-Leprosy Associations (ILEP), the Sasakawa Memorial Health Foundation and the  International Association for Integration, Dignity and Economic Advancement (IDEA). It also includes the national leprosy programmes of Brazil and Ethiopia, the International Leprosy Association, scientific organizations and the academic community. The secretariat for the partnership is located at the Task Force for Global Health.

FURTHER INFO; https://zeroleprosy.org/about-the-partnership/

Operational Excellence Working Group

Chair: Bart Vander Plaetse, FAIRMED
Coordinator: Christine Fenenga, Global Partnership for Zero Leprosy

All members of the working group are listed below.

The objective of the Operational Excellence Working Group is to foster the development, use, scale-up, monitoring, and evaluation of best practices and promising innovations in national leprosy control programmes. The working group is organized in sub-groups, focusing on five key areas:

  1. Identification/PEP: Identification of people at risk of leprosy & prevention of leprosy in this risk population/ How can Post-Exposure Prophylaxis (PEP) best be implemented in a country?
  2. Early Detection and Prompt Treatment: Sustaining early detection and prompt treatment of leprosy disease and measures when reaching zero leprosy
  3. Disability: Effective prevention and treatment of disability during and after antimicrobial treatment
  4. Stigma: Effective reduction of stigma and discrimination
  5. Infrastructure/operational capacity: Cross-cutting issues, such as human resources (HR), health finance, monitoring and evaluation (M&E) & surveillance, policy

Under the guidance of a facilitator and chair, each sub-group will:

  • Develop an inventory of best practices and innovation, which will be organized into a set of free online tools for countries.
  • Support country peer-to peer assessments to identify opportunities, challenges and needs in implementing tools towards zero leprosy.
  • Provide technical advice as needed when questions are raised about implementation of the online tools.

Group 4B Subtheme Stigma, discrimination & exclusion – English speaking

Chair: Taye Letta, National Leprosy Program, Ethiopia
Facilitator: Sunday Udo, The Leprosy Mission Nigeria

  • Nancy Sabuero, Philippine Association for Integration, Dignity ang Economic Advancement / IDEA-Philippines Inc.
  • Wim van Brakel, NLR
  • Thushani Dabrera, Ministry of Health, Sri Lanka
  • Nuah Perdamenta Tarigan, (GPDLI) Gerakan Peduli Disabilitas dan Lepra Indonsesia (GPDLI)
  • Pankaj Patel, Individual
  • Mohan Arikonda, The Leprosy Mission
  • Joseph Selvaraj, Grace Foundation
  • Sonali Nayak, PramilaEkAsha
  • P.K. Gopal, IDEA
  • Sunil Kumar, PramilaEkAsha
  • Pratap Rai Manglani, NLR India
  • Solomon Raju Moturu, The Leprosy Mission Trust India
  • Mohan Arikonda, The Leprosy Mission
  • Franscisco Onde, Coalition of Leprosy Advocate of the Philippines CLAP
  • Mahsin Hamuda, UNDP
  • Silatham Sermrittirong, Raj Pracha Samasai Institute
  • Nikita Sarah, The Leprosy Mission Trust India
  • Taranth Sigdel, Progress Self Help Group
  • Heleen Broekkamp, NLR

https://www.youtube.com/watch?v=ZI2rfjRUN7g&feature=youtu.be&fbclid=IwAR1L48zJGJhaXWbt-FUdoLcn65vXrfBtAmJ97Yqimeq3pptSD2v4JOtPpBo

Gambar mungkin berisi: 10 orang, orang berdiri

 

DISABILITAS BISA TERJADI PADA SIAPA SAJA DAN KAPAN SAJA!

Disabilitas itu jangan dihina dan jangan di bully, karena bisa tejadi pada siapa saja dan kapan saja, pengalaman menunjukkan bahwa disabilitas itu bukan saja terjadi pada sejak dini atau kanak-kanak, tetapi dapat terjadi sewaktu remaja dan dewasa, jika itu terjadi pada angkatan senior yang berumur 60 tahun keatas mungkin lumrah bagi anda, tetapi jangan lupa disabilitas dapat terjadi sejak muda remaja, bisa diakibatkan oleh penyakit atau kecelakaan. Marilah kita bersama-sama saling memberdayakan sesama, jika ada rekan atau sahabat atau handai tolan kita,  keluarga, bangunlah semangatnya, agar mereka memiliki semangat hidup. JANGAN DISINGKIRKAN ATAU DILEPASKAN DARI SEMUA KEGIATANNYA. Libatkan terus mereka, anggap itu adalah anda sendiri, berempatilah dengan mereka, bukan hanya sekedar simpati dan sok kasihan pada mereka yang sedang mengalami disabilitas, sekali lagi REFLEKSIKAN DENGAN DIRI ANDA, BAGAIMANA KALAU ANDA MENGALAMI DISABILITAS!!!

Gambar mungkin berisi: 8 orang, termasuk Latra Puspadi Bali, orang tersenyum, orang berdiri, mobil, keramaian, pohon dan luar ruangan

 

KUSTA dan DISABILITAS

Sengaja yang saya tulis pertama sekali KUSTA daripada DISABILITAS, kenapa? karena saya melihat bahwa isu kusta lama kelamaan makin terkikis dari kehidupan sosial kemasyarakatan kita, kusta bahkan bukan hanya manusianya dikucilkan akan tetapi juga KATA: KUSTA atau LEPRA itu sendiri. KUSTA memang lebih kecil scopenya dari disabilitas yang sangat luas. Kusta sering dianggap sebagai pemberi masalah dalam isu-isu yang pembangunan yang tidak memperhatikan masalah kemanusiaan misalnya parawisata yang hanya mementingkan pengembangan fisik daerahnya, bukan manusianya. KUSTA masih dianggap pengganggu “investasi” beberapa kelompok masyarakat. Semoga ini tidak memberikan efek negatif kedepannya, karena pemda yang mungkin tidak memberi perhatian pada stigma yang muncul di masyarakat seperti stigma kusta akan menggiring ke masalah ke masa depan. Kemungkinan menimbulkan rasa tidak suka dan “prejudice” pada mereka yang kusta sehingga mereka menjadi orang dan komunitas yang termarjinalisasi atau terpinggirkan dan ujung-ujungnya mereka tidak dapat bekerja atau akhirnya terbuang dari masyarakatnya, sangat menyedihkan !!! Semoga kita dapat berTRANSFORMASI…

 

The Role of Organizations of Persons with Disabilities in Empowering Persons with Disabilities

By Dr. Didi Tarsidi
Indonesia University of Education (UPI)
President, Pertuni (Indonesian Blind Union)

DEFINITION OF DISABILITY

The 2006 UN Convention on the Rights of Persons with Disabilities states that “…disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.
This is obviously made in line with the International Classification of Functioning, Disability and Health (ICF) that defines functioning and disability as multi-dimensional concepts, relating to:
• the body functions and structures of people
• the activities people do and the life areas in which they participate
• the factors in their environment which affect these experiences.

By being so defined, the ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being can experience a decrement in health and thereby experience some degree of disability. Disability is not something that only happens to a minority of humanity. The ICF thus ‘mainstreams’ the experience of disability and recognises it as a universal human experience. By shifting the focus from cause to impact, it places all health conditions on an equal footing allowing them to be compared using a common metric – the ruler of health and disability. Furthermore ICF takes into account the social aspects of disability and does not see disability only as a ‘medical’ or ‘biological’ dysfunction. By including Contextual Factors, in which environmental factors are listed, ICF allows to records the impact of the environment on the person’s functioning.

THE GLOBAL SITUATION OF PERSONS WITH DISABILITIES

The UN Web Services Section, Department of Public Information (United Nations, 2006) reveals the following facts about persons with disabilities in the world.

• Around 10 per cent of the world’s population, or 650 million people, live with a disability. They are the world’s largest minority.
• This figure is increasing through population growth, medical advances and the ageing process.
• In countries with life expectancies over 70 years, individuals spend on average about 8 years, or 11.5 per cent of their life span, living with disabilities.
• Eighty per cent of persons with disabilities live in developing countries.
• Disability rates are significantly higher among groups with lower educational attainment in the countries of the Organisation for Economic Co-operation and Development (OECD). On average, 19 per cent of less educated people have disabilities, compared to 11 per cent among the better educated.
• In most OECD countries, women report higher incidents of disability than men.
• The World Bank estimates that 20 per cent of the world’s poorest people are disabled, and tend to be regarded in their own communities as the most disadvantaged.
• Women with disabilities are recognized to be multiply disadvantaged, experiencing exclusion on account of their gender and their disability.
• Women and girls with disabilities are particularly vulnerable to abuse.
• According to UNICEF, 30 per cent of street youths are disabled.
• Mortality for children with disabilities may be as high as 80 per cent in countries where under-five mortality as a whole has decreased below 20 per cent.
• Comparative studies on disability legislation shows that only 45 countries have anti-discrimination and other disability-specific laws.

Education
• Ninety per cent of children with disabilities in developing countries do not attend school.
• The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities, according to a 1998 UNDP study.
• In the OECD countries, students with disabilities in higher education remain under-represented, although their numbers are on the increase.

Employment
• An estimated 386 million of the world’s working-age people are disabled. Unemployment among the disabled is as high as 80 per cent in some countries. Often employers assume that persons with disabilities are unable to work.
• Companies report that employees with disabilities have better retention rates, reducing the high cost of turnover. After one year of employment, the retention rate of persons with disabilities is 85 per cent.
• Thousands of people with disabilities have been successful as small business owners. The 1990 national census revealed that people with disabilities have a higher rate of self-employment and small business experience (12.2 per cent) than people without disabilities (7.8 per cent).

Violence
• For every child killed in warfare, three are injured and permanently disabled.
• In some countries, up to a quarter of disabilities result from injuries and violence.
• Persons with disabilities are more likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police intervention, legal protection or preventive care.
• Research indicates that violence against children with disabilities occurs at annual rates at least 1.7 times greater than for their non-disabled peers.

EMPOWERMENT

The underlying cause of the facts above is presumably the fact that the majority of persons with disabilities are under-empowered. Defined according to Omvig’s model, a person with disability is said to be empowered when he or she is capable of emotional adjustment, mastering the alternative techniques, is able to cope calmly with the misconceptions of others and is able to blend into the broader society — which are essential to enable him or her truly to take control of his or her life and to become the best that he or she is capable of becoming.
As “disability results from the interaction between persons with impairments and attitudinal and environmental barriers, eliminating these barriers is naturally instrumental in empowering persons with disabilities

THE ROLE OF ORGANIZATION OF PERSONS WITH DISABILITIES

History has taught us again and again that organized movements, including disability movements, are effective in bringing about social change, including combatting against attitudinal and environmental barriers. By definition, an organization of persons with disabilities is one that is representative of the persons with disabilities of a certain societal viscinity (national, regional or local), having a substantial number of members with a majority of its membership consisting of persons with disabilities, having a governing body with a majority of persons with disabilities, elected by the members at regular intervals.

The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, adopted by the United Nations 1993 General Assembly, Resolution 48/96, mandate States to recognize the right of the organizations of persons with disabilities to represent persons with disabilities at national, regional and local levels. States should also recognize the advisory role of organizations of persons with disabilities in decision-making on disability matters. Furthermore, States should encourage and support economically and in other ways the formation and strengthening of organizations of persons with disabilities, family members and/or advocates. States should recognize that those organizations have a role to play in the development of disability policy, and States should establish ongoing communication with organizations of persons with disabilities and ensure their participation in the development of government policies. (Rule 18).

As instruments of self-empowerment, organizations of persons with disabilities provide and promote opportunities for the development of skills in various fields, mutual support among members, and information sharing.

In a wider scope, the role of organizations of persons with disabilities is to identify needs and priorities, to participate in the planning, implementation and evaluation of services and measures concerning the lives of persons with disabilities, and to contribute to public awareness and to advocate change. Among the priority areas of their concerns (as identified by the Standard Rules) are accessibility, education, employment, recreation and sports, and religion.

The Standard Rules on the Equalization of Opportunities for Persons with Disabilities stipulates consultative and/or advisory roles for organizations of persons with disabilities in these priority areas:

• Organizations of persons with disabilities should be consulted when standards and norms for accessibility are being developed. They should also be involved locally from the initial planning stage when public construction projects are being designed, thus ensuring maximum accessibility. (Rule 5).

• Parent groups and organizations of persons with disabilities should be involved in the education process at all levels. (Rule 6).

• States, workers’ organizations and employers should cooperate with organizations of persons with disabilities concerning all measures to create training and employment opportunities, including flexible hours, part-time work, job-sharing, self-employment and attendant care for persons with disabilities. (Rule 7).

• Organizers of sports and recreation should consult with organizations of persons with disabilities when developing their services for persons with disabilities. (Rule 11).

• States and/or religious organizations should consult with organizations of persons with disabilities when developing measures for equal participation in religious activities. (Rule 12).

These participatory rules are in line with the disability movement slogan, “Nothing about Us Without Us”. The slogan relies on the principle of participation, and it has been made popular with Disabled Peoples Organizations since the turn of the 21st century as part of the global movement to achieve the full participation and equalization of opportunities for, by and with persons with disabilities.

The active involvement of persons with disabilities in the elaboration of the convention on the rights of persons with disabilities has proved to be an excellent example of how the principle of full participation can be put into practice and how it can contribute to the development of truly inclusive societies, in which all voices are heard and persons with disabilities can help shape a better world for all. The CRPD is believed, when fully implemented, can help accelerate the efforts to empower persons with disabilities, and organizations of persons with disabilities have a major role in these efforts.

Gambar mungkin berisi: 1 orang

 

Nothing About Us Without Us Joni Yulianto/Craig Ewers, November 2017

Nothing About Us Without Us
Joni Yulianto/Craig Ewers, November 2017

INTRO
When I was a kid I could not go to school
They said I’d be a burden to the class
But I showed them… and now they know that… it was not fair.

People like to label who they think I am
They say I can’t do this and can’t do that
But I showed them …now they know that… I can.
Bridge:
Too many words are used to try to put us down
Their world is flat but ours is spinning round and round and round
CHORUS: Nothing….about us….without us oh oh
We’re here now, you’re with us
What’s good for us is good for all
(Repeat…….)
INTRO AGAIN
Now that I am working, work along with me
I’m ok with you, you should be too
We’ll show them…so they know that…we can.

Let me take your arm and I’m prepared to lead
Read my signs and you’ll hear so much more
Roll with me… to places… you’ve never seen

Bridge:
Here come the changes that we’ve wanted for so long
Now is the time to change our whole approach to rights from wrong
CHORUS x 4

FOTO dari https://tokohinspiratif.id/joni-yulianto/

 

Arsitek dan Disabilitas dari Seorang Arsitek Yang Mengalami DISABILITAS

Arsitek sering dianggap seperti dewa dan maha tahu seluruh bagian bangunan dan interior dan segala aspek didalam satu bangunan, ilmunya yang begitu luas bahkan ke ilmu ilmu teknik dan sosial membuat mereka sangat percaya diri dengan keadaanya. Padahal semua itu hanya secara umum atau “general” saja, ilmu dan pengetahuan itu bukan detail dan mendalam, diperlukan suatu penerapan atau aplikasi yang jelas dan nyata di bangunan yang mereka rancang atau desain. Disabilitas adalah suatu kenyataan atau realitas yang JUJUR, dan tidak terwakili dengan hanya kata-kata dan konsep, diperlukan pengalaman yang panjang dan MENGALAMI. Bukan karena katanya atau teori-teori yang kaku. Mari wahai para arsitek silahkan berwacana akan tetapi yang paling baik MARILAH MENGALAMI menjadi disabilitas, walau anda belum mengalami disabilitas, anda bisa merasakan menjadi, dengan berlaku seperti penyandang disabilitas, niscaya anda akan berbeda melihat cara pandangnya!!

 

Perdana Menteri Jepang Abe meminta maaf kepada kerabat Yang Pernah Mengalami Kusta

https://www3.nhk.or.jp/nhkworld/en/news/20190724_23/?fbclid=IwAR1bZ32rL78w84VyLvYEZBQQUcL6LZ1iMbK53Q-oReqLyD4odoObgeSJooY

Abe apologizes to kin of former leprosy patients

Abe apologizes to kin of former leprosy patients
Perdana Menteri Jepang Shinzo Abe telah meminta maaf kepada keluarga YANG PERNAH MENGALAMI kusta untuk kebijakan pemerintah yang sekarang sudah tidak berlaku untuk memisahkan mereka selama ini.
Abe bertemu lebih dari 40 anggota keluarga YANG PERNAH MENGALAMI Hansen di kantor perdana menteri pada hari Rabu.
Pertemuan itu terjadi setelah pengadilan distrik Kumamoto memerintahkan pemerintah pusat bulan lalu untuk memberikan kompensasi kepada keluarga YG PERNAH MENGALAMI Hansen dalam gugatan yang diajukan oleh lebih dari 500 penggugat di seluruh Jepang. Pemerintah memutuskan untuk tidak mengajukan banding atas putusan itu.
Abe mengatakan bahwa keluarga YG PERNAH MENGALAMI KUSTA, tanpa diragukan lagi, menjadi subyek diskriminasi berat dan prasangka terhadap kusta dan menderita banyak rasa sakit dan kesulitan selama bertahun-tahun.
Dia membungkuk dan menawarkan permintaan maaf yang tulus kepada mereka atas nama pemerintah.
Abe mengatakan bahwa ia memutuskan untuk menerima putusan pengadilan dan memperkenalkan undang-undang baru untuk memberikan kompensasi kepada keluarga YANG PERNAH MENGALAMI Hansen, termasuk mereka yang tidak berpartisipasi dalam gugatan tersebut.
Dia juga berjanji untuk dengan cepat membentuk komite untuk mencari solusi untuk masalah dan untuk bekerja dengan keluarga untuk memberantas diskriminasi dan prasangka.
Kepala kelompok penggugat, Chikara Hayashi, mengatakan bahwa lebih dari 20 tahun telah berlalu sejak undang-undang pencegahan kusta dicabut, tetapi tidak mudah untuk menyingkirkan praktik-praktik diskriminatif yang telah berkembang selama beberapa dekade.
Dia mengatakan bahwa dia ingin perdana menteri dan pemerintahnya melakukan semua yang mereka bisa untuk memperbaiki kesalahpahaman publik melalui pendidikan berdasarkan pendapat keluarga korban.

Sources: NHK

Japanese Prime Minister Shinzo Abe has apologized to the families of former leprosy patients for the now-defunct government policy of segregating the sufferers.

Abe met more than 40 family members of the former patients of Hansen’s disease at the prime minister’s office on Wednesday.

The meeting came after the Kumamoto district court ordered the central government last month to compensate families of people with Hansen’s disease in a lawsuit filed by more than 500 plaintiffs across Japan. The government decided not to appeal the ruling.

Abe said that the patients’ families were, without doubt, subject to severe discrimination and prejudice against leprosy and suffered much pain and hardship for many years.

He bowed and offered a sincere apology to them on behalf of the government.

Abe said that he decided to accept the court ruling and introduce new legislation to compensate families of former Hansen’s patients, including those who did not participate in the lawsuit.

He also pledged to swiftly set up a committee to seek solutions to problems and to work with the families to eradicate discrimination and prejudice.

The head of the plaintiffs’ group, Chikara Hayashi, said that more than 20 years have passed since the leprosy prevention law was repealed, but it’s not easy to get rid of discriminatory practices that have built up over decades.

He said that he wants the prime minister and his government to do all they can to correct public misunderstanding through education based on the opinions of the victims’ families.

 

Disabilitas Aktif di setiap Lini Kehidupan termasuk didalam Sosial Politik

Keberadaan disabilitas Indonesia saat ini tidak lagi suatu yang aneh bagi rakyat INDONESIA karena negara kita sudah memiliki UU NO 8 TAHUN 2016, siapapun tidak ada yang menyangkal bahwa disabilitas itu bisa terjadi siapapun, termasuk anda dan saya. Disabilitas terjadi bisa melalui penyakit, kecelakaan dan sejak lahir. Siapakah yang dapat mengelak jika itu terjadi? Pak Saleh dalam gambar dibawah ini salah satu contoh yang nyata, apakah menyurutkan beliau dalam kegiatan sosial kemasyarakatan termasuk politik? Tentu tidak, semangat dan kecintaan beliau akan kepemimpinan orang yang dipilihnya membuat Pak Saleh bersemangat untuk hadir walaupun mungkin arena belum akses dan ramah kepada beliau sebagai penyandang disabilitas, pesan kami kepada Bapak Presiden Terpilih Pak Jokowi dan wakil presiden kami, JANGAN LUPAKAN KAMI PAK !

FOTO INI DIAMBIL OLEH ALEXANDRA DA SILVA seorang fotografer profesional

Pak Saleh,
Pria paruh baya yg berasal dari Bekasi….

Bersama 3orang kawan nya,
Beliau menempuh perjalanan ke Sentul,
Agar dapat hadir dalam acara Visi Indonesia…

Mau tau hasil perbincangan saya dg Beliau,
Simak link di bawah ini :

https://youtu.be/_0ZEII-7sOQ

 

APAKAH KEJUJURAN ITU MAHAL DI NEGERI INI ? – Pengalaman PENYANDANG DISABILITAS dan KUSTA di Kabupaten CIREBON

Telah terjadi tindakan yg tdk jujur disebuah UPT di Kab cirebon, pada acara Pelatihan yg seharusnya rekan yg terkena dampak dan disabilitas yg harus diundang, tapi yg datang dan diundang HAMPIR disabilitas 100 persen alias hanya 2 penyandang disabilitas.
Dengan pemberian pelatihan juga terkesan asal saja. Pelatihan service elektonik hanya di lakukan selama 3 hari.
Menurut info dari salah seorang yg pernah terlibat di kegiatan tahun lalu. Biasanya kegiatan yg seharusnya seminggu tapi nyatanya hanya 3 hari dgn biaya transport selama 3 hari itu hanya Rp 100.000,-
Coba kalau bener benar *transparan*, tentunya di spanduk kegiatan tertera berapa hari hrs dilakukan, tapi ini tdk ada.
Mohon diberikan solusi yg jelas dari Pemda daerah spt ini dan dampaknya bagi kelangsungan pemberdayaan disabilitas kedepan, kalau begini caranya bagaimana kami yg di Kab Cirebon bisa maju. Salam kami FARHAN dan GPDLI link di Cirebon.
Contact WA kami melalui GPDLI via email di perkumpulanGPDLI@gmail.com
 

KUNJUNGAN KE MEDAN dan sekitarnya di SUMATERA UTARA YANG SANGAT PENTING KALI INI

Beberapa kali kami berkunjung ke Medan dan ada saja hal yang baru kami temukan, STIGMA yang masih teramat tinggi bagi DISABILITAS dan juga KUSTA TIDAK MENYURUTKAN KAMI tetapi membuat kami tetap semangat berkunjung ke daerah yang sangat potensial ini, DENGAN TANAHNYA YANG SUBUR apalagi di sekitar LAU SIMOMO Tanah Karo sekitar 80 KM dari MEDAN. Namun stigma yang masih sangat tinggi membuat mereka sering tidak berkutik dalam membangun dirinya sendiri, keluarga dan komunitasnya. STIGMA yang sering muncul bahkan dari tenaga tenaga kesehatan yang ada disekitar mereka. Entah sampai kapan mereka bertahan, cara berfikir lama baik di petinggi pegawai pemerintah dan komunitas membuat persoalan mereka tetap begitu-begitu sejak berpuluh tahun ini. Sementara kandidat legislator bersuara dengan meraup suara mereka, tetapi hanya jadi OBJEK dan bukan SUBJEK. Saya melihat pemerintah daerah TIDAK TUNTAS menyelesaikan persoalan yang ada, khususnya lagi setelah bencana GUNUNG SINABUNG yang terus menerus bergejolak. SEMOGA TAHUN INI ADA PERBAIKAN, KALAU TIDAK KAMI TERPAKSA MENEMPUH CARA YANG LEBIH BERSUARA dari yang sebelumnya, semoga…