According to the United Nations “sport can help reduce the stigma and discrimination associated with disability because it can transform community attitudes about persons with disabilities by highlighting their skills and reducing the tendency to see the disability instead of the person.” Courtesy: United Nations

By Emily Thampoe
UNITED NATIONS, Sep 19 2018 (IPS)

When it was time for Joe Lupinacci to graduate from his high school in Stamford, Connecticut, he knew he wanted to go to college. While other students were deciding which college to apply to, the choice required more thought and research on Lupinacci and his parents’ part. Lupinacci, who has Down Syndrome, needed a college that would meet his needs.

“I wanted to go to college and be like my older brother and have the college experience. I wanted to meet other people like me and learn how to be more independent,” the now 22-year-old tells IPS via email.

While it is common in the United States for public school districts to have special education programmes that offer educational support to disabled individuals, many universities only meet the minimum requirements of the country’s Disabilities Act. But there are currently at least 50 universities that go further and offer programmes and/or resources for students with disabilities.“I turned from a unfocused player who would skate around the rink touching every pane of glass to a player who got into the game and played like a man. Daredevils has helped me gain friendship." -- former New Jersey Daredevils player, Ryan Griffin.

The College Experience Programme (CEP) at the College of St. Rose in Albany, New York is one of those programmes.

The CEP is a two-year residential, non-credit certificate programme hosted in partnership with Living Resources, a local organisation that helps people living with disabilities. While the programme is not a traditional one—it does not end in students earning a bachelor’s or associate’s degree—it allows students to focus on a career area that interests them. It also teaches students valuable skills that they can apply to their life, in parallel to the educational classes they take.

Lupinacci and his family learned of it through their own research and when CEP staff visited his high school’s college fair. After visiting the College of Saint Rose on several occasions, he and his family found it a great fit.

Colleen Dergosits, the coordinator of student life and admissions for the programme, tells IPS via email that its objective is to, “give students with developmental disabilities opportunities similar to their siblings and high-school peers.”

“Life skills are not taught in traditional college experience, these are often the skills people without disabilities take for granted in knowing. For those with a disability, when life skills are not naturally developed, it can hold back a person from being able to transition into a natural college atmosphere away from their family members or furthermore an independent life,” Dergosits says.

The CEP provides finance classes that help students understand how to make purchases in an effective way, how to split a bill between friends, and the importance of paying bills on time.

For Lupinacci, who entered the programme in 2015 and graduated in 2017, the CEP has given him skills and so much more.

“After going through the programme I made good friends. I learned to cook, clean and make decisions on my own,” he says. He also gained a new-found sense of independence.

With the programme’s “community involvement” component, students learn how to navigate their neighbourhood and attend off campus activities, and how to save money for those activities. These are all skills that many students on the programme may not have been exposed to before.

Learning through experience is imperative. Dergosits says that the CEP’s vocational courses are “invaluable.” “When the foundation of employment is broken down and taught, then supervised in a real world setting, our students are better prepared to hold employment on their own post-graduation,” she says. Students can learn what the workforce is like through interning and/or working at local businesses with assistance from an on-site job coach.

Dergosits and the rest of the staff have seen progress from the growing number of students they have worked with since the programme’s beginnings in 2005.

Students who previously kept to themselves and were reliant on familial support, have developed. They now have friends, can do household chores, travel independently and even have part-time jobs.

Lupinacci says he ended up going out quite often with his friends without adult supervision. “It was fun planning and going out with my friends with no adults. I went to many campus and off site sporting events that were really fun,” he shares.

Recreation is Key

While equal educational opportunities are important in the lives of disabled people, balance is also imperative.

Steve Ritter, a coach for the New Jersey Daredevils, a special needs ice hockey team for players of all ages, believes in the power of sports for disabled people.

“Sports helps them with social skills, which is lacking in this community. We make sure when we travel to places to play games that there is a place where they can get together and hang out,” he tells IPS.

According to a United Nations publication entitled Disability and Sports, “Sport can help reduce the stigma and discrimination associated with disability because it can transform community attitudes about persons with disabilities by highlighting their skills and reducing the tendency to see the disability instead of the person.”

The team practices pretty much every Saturday during the year and also plays matches with other teams from all over the east coast. They also make an effort to have outside opportunities for the players to bond and create long-lasting friendships.

Ryan Griffin first joined the Daredevils in 2001 after trying several options to stimulate his mind. He was diagnosed as being on the Autism spectrum when he was three and a half years old, and feels he has benefited from his involvement with the team.

“I turned from a unfocused player who would skate around the rink touching every pane of glass to a player who got into the game and played like a man. Daredevils has helped me gain friendship.

“I’ve learned about sportsmanship too, it’s not just about winning. Once I got to know all my teammates, we quickly bonded together as friends and we always will be there for each other like family,” Griffin, who is now 23, shares with IPS via email.

Griffin feels as though the experience he has had with the team has given him valuable life skills.

“Most importantly, Daredevils has taught me leadership. As team captain, I learned that leaders, like captains, should always lead by example. That means, trying to stay as positive as possible, even when things are not going the way they should be,” Griffin says.

In a world that has excluded disabled people from partaking in basic human needs such as education, the workforce, and being a part of a community, it is clear that programmes that encourage mental and social growth can be important in the life of a disabled person.

So while the CEP in Albany and the New Jersey Daredevils in New Jersey are both different localised experiences, they are examples of what communities should be doing in order to promote the inclusion and development of people with disabilities.

Excerpt:

Women with disabilities in Afghanistan protest for their rights. Credit: Ashfaq Yusufzai/IPS.

By Carmen Arroyo and Emily Thampoe
UNITED NATIONS, Aug 13 2018 (IPS)

Children with disabilities are up to four times more likely to experience violence, with girls being the most at risk, according to the United Nations Children’s Fund.

“Children with disabilities are among the most marginalised groups in society. If society continues to see the disability before it sees the child, the risk of exclusion and discrimination remains,” Georgina Thompson, a media consultant for UNICEF, told IPS.

According to the World Health Organisation, 15 percent of the global population lives with disabilities, making it the largest minority in the world—with children and women numbering higher among those disabled.

Last month, more than 700 representatives of non-governmental organisations, private companies and governments got together to address the systemic discrimination that exists against people with disabilities at the Global Disability Summit in London.

“Creating a more equal world where children with disabilities have access to the same opportunities as all children is everyone’s responsibility,” Thompson said.

More than 300 organisations and governments signed an action plan to implement the U.N. International Convention on Disability, which included 170 commitments from multiple stakeholders to ensure disability inclusion. The summit was organised by the governments of Kenya and the United Kingdom, along with the International Disability Alliance. The most important topics discussed during the meetings included passing laws to protect disabled citizens and promoting access to technology for people with disabilities.

Women and children face the most discrimination within the disabled community. A report presented to the U.N. Secretary-General on the situation of women and girls with disabilities stated that while 12 percent of men present a disability, a slightly higher amount of women—19 percent—have a disability.

In addition, girls are much less likely to finish primary school than boys, if both present disabilities. And girls are more vulnerable to sexual violence.

According to the U.K.’s Department for International Development, mortality for children with disabilities can be as high as 80 percent in states where child mortality has significantly decreased.

There is a strong consensus regarding the risk that both children and women face. “Women with disabilities are especially vulnerable to discrimination and violence (three to five times more likely to suffer from violence and abuse that the average [female] population),” André Félix, external communications officer at the European Disability Forum, told IPS.

When asked what to do to address this issue, A.H. Monjurul Jabir, co-lead of the U.N. Women’s Global Task Team on Disability and Inclusion, explained his viewpoint on establishing a targeted gender agenda: “The implementation of strategy requires a bottom-up approach by offices, colleagues, and partners on the ground.”

According to Jabir, U.N. Women’s strategy is “to support U.N. Women personnel and key stakeholders to facilitate the full inclusion and meaningful participation of women and girls with disabilities.”

“This would be done across all U.N. Women’s priority areas through our operational responses and internal accessibility to achieve gender equality and empowerment of all women and girls with disabilities,” he said.

Thompson suggested the following strategy for UNICEF: “We must increase investment in the development and production of assistive technologies. Assistive technologies, such as hearing aids, wheelchairs, prosthetics, and glasses, give children with disabilities the chance to see themselves as able from an early age.”

The aforementioned strategy was one of the goals of the Global Partnership for Assistive Technology, a collaboration launched during the summit to accomplish the sustainable development goals and offer technology to those who with disabilities. “And yet, in low-income countries, only five to 15 percent of those who need assistive technology can obtain it,” Thomson added.

And, as 80 percent of the population with disabilities live in developing countries, emergency situations and lack of education are also crucial issues to be addressed when launching policies for disability inclusion.

“We must make humanitarian response inclusive. In emergency situations, children with disabilities face a double disadvantage. They face the same dangers as all children in conflicts or natural disasters do, including threats to their health and safety, malnutrition, displacement, loss of education and risk of abuse.

“But they also face unique challenges, including lack of mobility because of damaged infrastructure, difficulty fleeing harm and the prejudices that keep them from accessing the urgent assistance they need,” Thompson said.

According to the U.N. Educational, Scientific and Cultural Organisation, 90 percent of children who live in developing countries that have educational opportunities available do not attend school.

“We must make education inclusive. Around half of all children with disabilities do not go to school because of prejudice, stigma or lack of accessible learning. Of those who do go to school, about half do not receive quality education because of a lack of trained teachers, accessible facilities, or specialised learning tools,” Thompson urged. “Excluding children with disabilities from education can cost a country up to five percent of its GDP due to lost potential income.”

But, who is responsible?

As was seen during the summit, member states are not the only stakeholders taking responsibility for disability inclusion. U.N. agencies, NGOs, and private firms are constantly launching programmes to reduce the gap and erase discrimination.

However, Félix explained what each stakeholder would be responsible for: “Member States are the policymakers. They need to guarantee that all the population is included and benefits from international development and inclusive policies. They also need to make sure that they consult civil society in the process.”

As for civil society, he said: “Civil society’s role is to monitor and advise the project and while they need to be included and part of international development (especially local civil society), the resources should come from member states.”

Thus, their work is intrinsically linked: “Structures of support for persons with disability must be community-based, which means no support for institutions that segregate persons with disabilities.”

Thompson added that those actors must work so closely that it would be hard to separate roles.

Agreeing with her, Jabir concluded: “It is the responsibility of everyone, all actors and stakeholders, we must work together, cohesively, not separately. The days of only standalone approach, or silo mentality is over.”

Excerpt:

By Charity Chimungu Phiri
BLANTYRE, Malawi, Mar 29 2017 (IPS)

When building a house, it’s critical to lay a strong foundation. The same applies to education, with studies showing that children who attend early learning centers perform better in school than those who do not.

In Malawi, a 2003 national survey found that only 18.8 percent of school-age children with disabilities were attending class. More than twice as many of the same age group without disabilities (41.1 percent) attended school. This was mainly attributed to the lack of a disability-friendly environment."Since many children come from poor families, parents are often faced with the dilemma of choosing which child to send to secondary school, bearing in mind that the one with difficulties needs special care." --teacher Miriam Chimtengo

More parents are now sending their young ones to such special preschools, some as little as two years old. This kind of early intervention is especially critical for children with learning disabilities such as autism.

Most autistic children are diagnosed late in Malawi due to the lack of specialist doctors and caregivers, but also failure by their parents, guardians and teachers to recognize that the child has learning difficulties.

James Botolo* lives in one of the suburbs of Blantyre and has a 10-year-old autistic son named Chikondi*.

“For so long, we never could figure out what was wrong with our son. Of course he didn’t like to play with his siblings at home and times he could talk to himself but we never thought it was anything. But what mainly bothered us was that he never did well in school, so we kept moving him from one private school to another. One day I met someone who alerted me that my son could have a learning problem,” he said.

Autistic children often lack socialization skills, are hyperactive, struggle to pay attention and sometimes react to things by crying or hurting themselves.

Chikondi is now in standard two at the St. Pius X Resource Centre, a school for children with physical and developmental disabilities such as cerebral palsy, autism, dyslexia, epilepsy, hearing impairment, and blindness.

Currently in Malawi, there are over 40 resource learning centers for children with various disabilities.

Miriam Chimtengo, 41, is a specialist teacher at St. Pius X, where she teaches a class of about 27 students (16 full time).

Chimtengo, who holds a diploma in Special Needs Education, told IPS that there are major gaps in the social support system for the families of children with learning challenges.

“Even though we’re laying this good foundation for the children, for most of them their education does not go further. The parents bring the children to us here at primary school where they will start noticing the changes, but after the child finishes standard 8, they just keep them at home…so all this work at the grassroots level is not sustained.”

According to Chimtengo, there are limited resources for a child with learning difficulties to further their education.

“Since many children come from poor families, parents are often faced with the dilemma of choosing which child to send to secondary school, bearing in mind that the one with difficulties needs special care, special learning materials, full supervision and assistance, which might be hard to provide,” she said.

“Some parents also believe they can better take care of their child alone at home than at school where they will not be around to protect their child.”

Chimtengo said that those with physical disabilities such as visual impairments, deafness and limited limb mobility are more likely to go further in school than children with mental/emotional issues such as autism.

The other contributing factor is that there are no free services for poor families who wish to send their mentally challenged children to behavioral therapy. Only physiotherapy is free in government hospitals and at SOS Villages.

“For example, here in my class I have children whom upon assessment we recommended that they go for therapy, but only those parents who are financially better off have put up their kids in therapy…we have been lobbying with the government to make links with such specialists so that they are available for all children regardless of their financial standing,”

This scenario automatically puts a child with a learning disability at a disadvantage to later further their education or secure a job.

There are limited spaces offered to youth with disabilities in national vocational training schools in Malawi. They only take in a certain number, which is far below the actual population in need.

In other private vocational training facilities, the prerequisite for entry is a Malawi School Certificate of Education-MSCE (equivalent to a high school diploma), which many children with mental disabilities find hard to earn.

The Living Conditions study of 2013 found that many youths with various disabilities were frustrated with the large gap in the provision of vocational training services, as well as some other services such as welfare, assistive devices and counseling.

In 2015, the government launched a program called Community Technical Colleges aimed at helping poor children, including those with disabilities and lacking high school diplomas, gain access to tertiary education.

International experts on autism advise parents with learning difficulties to take a leading role to ensure that their child secures some form of employment.

The website Autism Speaks says it is important to encourage the child to network at community and family events to meet potential employers.

“Encourage your son or daughter to think about their hopes, dreams, interests and strengths as a way to start planning for employment. One of the most valuable resources for adults with autism is peer support and mentoring.”

The other challenge in educating children with special needs in Malawi is lack of specialists both in the education and health sectors. For the whole of the commercial capital Blantyre, there is only one neurological doctor who sees patients twice a week at the Queen Elizabeth Central Hospital.

There are many special education teachers, but are scattered across the country.

“Literature says that one special needs teacher should attend to five kids. But because of the increase of children, we’re teaching more than that. This is challenging because different disabilities have different needs,” said Chimtengo, the special needs teacher at St Pius X.

“It means in one lesson I should try to capture all the needs of every student, which takes a lot of time and effort. Our colleagues in the normal classes teach a class, but for us we teach individuals who need to be taught the things repetitively. We call it repetition and drilling,” she said.

Excerpt:

By Emina Ćerimović
NEW YORK, Jul 6 2015 (IPS)

Last week, I went to see the new flick “Love & Mercy,” about the life of Brian Wilson, a singer, songwriter, and the genius behind The Beach Boys. I hadn’t heard much about the film. In fact, I was expecting a summer movie about surfing and fun; The Beach Boys playing Kokomo, Good Vibrations, and Surfin’ U.S.A. on sunny California  beaches.

Emina Ćerimović. Photo Courtesy of HRW

I was wrong. Instead, lives of hundreds of people I’ve met unfolded on the screen.

Love & Mercy depicts Wilson in two narratives: in the first, he is portrayed at the height of his fame as the leader of The Beach Boys in the 1960s. The second features a middle-aged Wilson misdiagnosed with paranoid schizophrenia by Eugene Landy, Wilson’s therapist and legal guardian.

In the movie, Landy keeps Wilson heavily medicated as he controls every aspect of his life, including his finances, residence, family relationships and social interactions, and other basic life decisions. In one scene, Wilson talks about not speaking to his mother and daughters for years because Landy “doesn’t think it is a good idea.”

In another, Landy tells Wilson when and how much he should eat and whom he should date. Landy himself explains his influence:  “I’m the control. He is a little boy in a man’s body… It is my job, my duty to approve everyone Brian is spending time with.”Ivan and Tatjana told me that they did not consent to their confinement to an institution. They were, in fact, never asked about their preferences, wishes and wants.

Wilson did not argue against Landy taking charge for fear that Landy would have him committed to an institution. As Wilson explains in the movie: “I can’t do that [disobey Landy]. He is my legal guardian. He can do things to me… He can send me away… There’s no way out.”

As the movie unfolded, it wasn’t solely Wilson’s story that I saw on the screen. I was reminded of Tatjana and Ivan, whom I met in Croatia. They are among the 18,000 people with disabilities placed under guardianship there and denied their right to make decisions about their lives.

More than 90 percent live under full guardianship, under which the guardians – often nominated by the government – make all life decisions for them.

Tatjana was diagnosed with schizophrenia in her early 30s, deprived of her legal capacity and placed under guardianship. She is now 47 but can’t visit her daughter or her mother without the permission of her guardian – in her case, a social worker.

It is the same if she wants to move to another house, get married, sign an employment contract, make health care decisions, or even officially publish her poems. Tatjana lived for nine years in an institution against her will because her legal guardian placed her there.  

Ivan is 30 and was diagnosed with mild mental health problems. He was just 16 when he was placed indefinitely in Lopaca, a psychiatric hospital where 168 people, including 20 children, are confined. He still lives there.

Ivan and Tatjana told me that they did not consent to their confinement to an institution. They were, in fact, never asked about their preferences, wishes and wants. Both of them were stripped of their right to make decisions about their lives and appointed legal guardians.

Neither Tatjana nor Ivan was present during the court proceedings determining their legal capacity so they could  provide their input for this major decision about their life.  While guardians are supposed to only oversee decisions with legal consequences, such as signing contracts, in Croatia – just like what was depicted in Love & Mercy –guardians can monitor and control every move a person makes.

I saw firsthand that people with disabilities trapped in institutions in Croatia can experience a range of abuses including verbal abuse, forced treatment, involuntary confinement in hospitals, and limited freedom of movement.

At a pivotal point in the movie, Landy forbids Wilson and Melinda Ledbetter, his current wife, from seeing each other. That triggers Ledbetter, the true heroine of the movie, to intensify her efforts to free Wilson from Landy’s control. She learns that Wilson’s will would have awarded the vast majority of his wealth to Landy. The good news: Wilson’s family files a lawsuit successfully challenging the guardianship.

Sadly, there are no heroines to free Tatjana or Ivan of their guardians. There is a chance of a happy ending though. Croatia, unlike the U.S., has ratified the U.N. Disability Rights Treaty, which requires governments to move away from guardianship and instead provide a system of assistance and support for decision-making that respects the autonomy, will, and preferences of the person with the disability. Croatian laws, however, don’t reflect this.

Key policymakers in the Croatian government should see “Love & Mercy.” Maybe then they will abolish Croatia’s guardianship regime and provide a wide range of support measures. Who knew that The Beach Boys’ influence could go so far beyond their music?

Edited by Kitty Stapp

Excerpt:

Disability and poverty are interrelated, due to discrimination and lower education and employment levels. Credit: Bigstock

By Nora Happel
UNITED NATIONS, Jun 25 2015 (IPS)

Participation, political and economic empowerment, inclusion, accessible technology and infrastructure as well as indicators for meaningful implementation are among the key issues persons with disabilities want to see reflected in the Sustainable Development Goals (SDGs).

In light of the ongoing negotiations on the post-2015 development framework, people with disabilities are calling upon governments to put an end to exclusion and discrimination by making persons with disabilities and their rights more visible in the SDGs.“We can no longer afford the cost of exclusion." -- Catalina Devandas Aguilar, Special Rapporteur on the Rights of Persons with Disabilities

Rachel Kachaje, Deputy Chairperson for Development and Under-Represented Groups at Disabled People’s International (DPI) in Lilongwe, Malawi and former Malawian Minister of Disability and Elderly Affairs, told IPS: “I would want to see the SDGs turning persons with disabilities into productive citizens in their respective countries.

“It pains me most of the time seeing persons with disabilities struggling to be recognised in society,” she said.

Rachel Kachaje knows what she is talking about. Struck by polio at the age of three, she lost the use of her legs. As her family could not afford a wheelchair, mobility challenges significantly complicated her primary and secondary school education. When she had finished school and was unable to attend university, finding a job proved very difficult at a time when companies refused to hire persons with physical impairments.

Yet, in the end, due to her hard-working spirit and encouraging family environment, Kachaje managed to overcome these challenges and steadily moved up the career ladder, culminating in her appointment as Malawian minister of disability.

The personal story of Rachel Kachaje illustrates how existing physical, societal, educational and professional barriers often prevent persons with disabilities from attaining their real potential and fully participating in society, while positive empowerment and encouragement can have important enabling effects.

Empowerment of persons with disabilities is indeed one of the core demands the activist enunciates. Speaking to IPS, Kachaje emphasised the importance of facilitating access to education as a “master key that unlocks all doors to life” and providing livelihood to allow for agricultural activity and food security. Apart from that, she said, health care services, social activities and greater involvement in politics are steps that will help persons with disabilities who are struggling to become fully productive citizens.

“I would want persons with disabilities in general and more in particular women with disabilities and their representative organisations to participate and be fully involved and consulted in government processes. […] This should not be just on paper only. I would want governments to walk the talk.”

As pointed out by the activist, considerable progress has taken place in Malawi in terms of inclusive education and economic as well as political empowerment.

“Schools are being made accessible, special needs teachers are being trained. There are still a lot of challenges but still something is being done and political will is there to make education inclusive,” she said.

“People with disabilities also get social cash transfer as part of economically empowering persons with disabilities. Some persons with disabilities have been appointed into decision making bodies.”

Two weeks ago, measures to overcome exclusion and mainstream the rights of persons with disabilities across the sustainable development agenda were discussed at the Eighth Session of the Conference of the States Parties (COSP8) to the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

The focus of this year’s conference was on poverty reduction, equality and development. As underscored by many speakers, disability and poverty are interrelated, which is due mainly to discrimination and lower education and employment levels.

A few days ahead of the conference, the zero draft of the outcome document for the U.N. Summit to adopt the post-2015 development agenda was released. In this context, many participants deplored that persons with disabilities were not specifically referred to in the first SDG, aimed at ending poverty in all its forms everywhere.

According to Venkatesh Balakrishna, honorary president of the Community-Based Rehabilitation Global Network, “being invisible from the goal means being invisible from the benefits”. He called upon governments to explicitly mention persons with disabilities in the first SDG and add specific targets and indicators.

“Give hope to millions of people. Please use your pen for justice,” he urged.

Yet, compared to the Millennium Development Goals (MDG’s), persons with disabilities have gained visibility in the zero draft document.

Priscille Geiser, Head of Technical Unit ‘Support to Civil Society’ at Handicap International, told IPS: “We do welcome the Zero Draft in which the inclusion and recognition of the rights of persons with disabilities throughout the entire document is groundbreaking compared to the Millennium Development Goals, and we welcome the fact that references to persons with disabilities have been strengthened throughout the declaration.”

On the other hand, she said, there were still shortcomings in terms of accessible technology and concrete indicators to measure implementation. Also, more emphasis need to be put on active participation and involvement of persons with disabilities.

“It is critical that commitments are made so that the SDGs are implemented and reviewed through meaningful participation. Overall, the active role of people to be agents of change, rather than simply as beneficiaries, is highly underestimated in this new agenda.”

Throughout the conference, participants stressed the fact that inclusion should not be seen as charity, but as an investment in society that will generate economic benefits and improve life for everybody.

“We can no longer afford the cost of exclusion,” said Catalina Devandas Aguilar, Special Rapporteur on the rights of persons with disabilities, with an eye on the lost economic potential due to the exclusion of children with disabilities from school and ongoing labour market discrimination.

Speaking about future challenges, she emphasised the need to translate the provisions under the convention into legal action on the ground, provide persons with disabilities with accessible services, including accessible infrastructure and better social protection, collect data, set concrete targets and indicators and support the creation of institutions. According to her, the ultimate goal is the full participation of persons with disabilities in community life.

These points were repeatedly raised by almost all participants, demonstrating remarkable consent on the steps that need to be taken. This gives cause for hope that further concerted procedures will increase the visibility of people with disabilities in the post-2015 development framework and steadily make the implementation of the CRPD a reality.

Edited by Kitty Stapp

A disabled but talented young artist at the Kome School in Tokyo. Credit: UN Photo/Jan Corash

By Nora Happel
UNITED NATIONS, Jun 6 2015 (IPS)

“We should remove the ‘dis’ and focus on ‘abilities,’” Daniela Bas, director of the Division for Social Policy and Development at the U.N. Department of Economic and Social Affairs, said at a media event on the rights of persons with disabilities on Friday.

The event, sponsored by the Republic of Korea, took place just a few days ahead of the Eighth Session of the Conference of the States Parties to the Convention on the Rights of Persons with Disabilities (CRPD).

The purpose was to raise awareness about the ongoing challenges faced by people with disabilities and to advocate for a broad reflection of their rights in the post-2015 development agenda.

Particular emphasis was placed on the empowerment of people with disabilities.

“What is disabling is the environment,” said Victor Calise, commissioner of the New York City Mayor’s Office for Persons with Disabilities.

He said efforts need to focus on combating stereotypes and prejudices and providing accessible infrastructure including transportation, education, health, housing and employment to ensure people with disabilities could unfold their abilities and no one was left behind.

Compared with the conferences on the seven other existing U.N. Human Rights Conventions, the Conference of the States Parties to the CRPD is unique as it not only serves as forum to elect the presidents for the coming two years, but as a growing platform of dialogue bringing together civil society actors, governments and the U.N. to discuss ways on how to overcome exclusion and advance the rights of persons with disabilities.

As shown by the large increase in member states attending the conference from 29 to 150 in recent years, attendees said the Conference has gained political weight it can now use as a vital tool for advocacy, thus allocating new resources and enabling change in policy and legislation at the local level.

Edited by Kitty Stapp

Monica Wambui, 37, who is deaf, receives HIV/AIDS information in sign language. Wambui was among more than 40 people with disabilities who attended a workshop organised by the USAID-funded APHIAplus Nuru ya Bonde project in Nakuru, Kenya. Credit: USAID/George Obanyi

By Rashmi Chopra
NEW YORK, Nov 28 2014 (IPS)

Jane is a young Zambian mother with a physical disability in Lusaka, who uses a wheelchair to get around. She does not let clinics without ramps or without wheelchair accessible toilets and equipment stop her from claiming her right to health care, including HIV prevention services.

“You have to go the clinic to test yourself, to know your status – you have to force yourself, even crawling, so that the government can see that the clinics are not user-friendly,” she told Human Rights Watch.Faith, 25, a deaf, HIV-positive woman in Zambia, lost her hearing when she contracted cerebral malaria at the age of five. Faith did not know about HIV prevention until she tested positive in 2012.

In local communities, legislatures and at the United Nations, people with disabilities like Jane are demanding their right to equal access to HIV services. Not only on Dec. 1, World AIDS Day, but every day.

This week we also observe the international day of persons with disabilities. This coincidence of the calendar is not a coincidence for millions of people with disabilities around the globe who may have never received any information on HIV and are unable to access HIV prevention, treatment and care services.

Yet they are at increased risk of HIV infection because of discrimination in schooling, poverty and greater risk of physical and sexual violence.

Faith, 25, a deaf, HIV-positive woman in Zambia, lost her hearing when she contracted cerebral malaria at the age of five. She dropped out of school after only a few years because her family could not afford the transportation costs to send her there, and in any case did not believe she would benefit from schooling.

Today, Faith cannot read and communicates through a mix of formal sign language and informal signs that are understood and translated by her brother.

Faith did not know about HIV prevention until she tested positive in 2012. HIV prevention meetings in her local community are not conducted in sign language. And even if Faith had been able to continue her schooling, she likely would not have learned about HIV because of the lack of accessible materials and peer-based HIV prevention programmes for children with disabilities.

Faith found out that she was HIV-positive after giving birth to her daughter, who is also HIV-positive. Her husband is abusive and often absent. Faith relies on her mother to accompany her to appointments for antiretroviral medication and to help her understand information about care and treatment for her and her baby. There is usually no sign language interpreter at the clinic she visits.

A healthcare worker at her clinic told Faith and her mother that someone like Faith should not be allowed to have any more children.

But these barriers, and stigmatising attitudes, are starting to change.

In its 2014 ‘Gap Report’, UNAIDS recognised people with disabilities as one of the 12 vulnerable populations left behind by the AIDS response.

In Zambia, where more than one in 10 adults are living with HIV, and a similar number of people are estimated to have a disability, the government could recognise people with disabilities as a key population within the national HIV response, who should be prioritised for targeted action.

A disability-inclusive approach to HIV policies and national strategic plans is critical for countries in eastern and southern Africa, which remain the epicentre of the HIV pandemic.

Disabled persons’ organisations (DPOs) as well as other disability and health organisations in the region are also working hard to promote and develop inclusive and targeted HIV and sexual and reproductive health services.

Zambia Deaf Youth and Women (ZDYW), a local organisation from the Copperbelt province for example, has been supporting training of deaf counselors to provide peer-based HIV testing services in the region.

This year the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) in Zambia will recognise a number of ‘PEPFAR Champions’ who are promoting equal access to HIV services for people with disabilities.

This is a good start, but more needs to be done, and quicker, to draw broader attention to the needs of individuals with disabilities in HIV services and to integrate HIV issues within all disability work. This requires resources, specific budgetary provisions, donor funding allocations and data collection on disability.

The Zambian HIV/TB activist and advocate for disability rights, Winstone Zulu, would have turned 50 this year that marks half a centenary of Zambia’s independence. In this week that recognises both the global AIDS pandemic and the more than one billion people worldwide who have a disability, Zambia should honor his and others’ struggle for equal access to HIV services, and implement inclusive HIV services as a priority, to ensure that people with disabilities such as Jane and Faith no longer remain invisible in the fight against HIV.

Edited by Kitty Stapp

Excerpt:

The Rainbow Disability Theatre Group performs its play ‘The Child from Seaview’ at the Wan Smolbag Theatre in Vanuatu. Credit: Wan Smolbag

By Catherine Wilson
PORT VILA, Jun 16 2014 (IPS)

In the Pacific Island state of Vanuatu, 23 actors with disabilities, from youth to senior citizens, who have battled physical and social barriers all their lives, are now empowering themselves and others through socially engaged theatre.

Plays inspired by their personal experiences are impacting audiences in schools, urban communities and rural villages across this nation of 82 islands, home to more than 247,000 people, located west of Fiji.

“I am blind and the first time I [started] acting I was very frightened, but every day I went to the theatre I gained confidence and now I can do anything in front of a crowd,” Alista Douglas, a young woman and member of the Rainbow Disability Theatre Group, told IPS in the capital, Port Vila.

“At first, when we got off the bus or the truck, people just watched us like they had never seen people with disabilities...But after we did the play, they didn’t see our disabilities anymore." -- Sergio Moses, a member of the Rainbow Disability Theatre Group
Since 2010, when actor Willie Sablan founded the group, it has produced plays and radio dramas about the challenges, dreams and successes of those living with disabilities.

“It was my dream to be an actor,” Sablan reminisced. “I was the only disabled person in my local youth drama club when I spoke to local scriptwriter Jo Dorras about my vision to start a theatre group for disabled people.”

Dorras works with the Wan Smolbag Theatre, a Pacific Islands-based development theatre organisation that uses the performing arts to generate awareness and public discussion about issues facing Pacific societies, such as corruption, domestic violence, AIDS and environmental sustainability. Human rights topics are also addressed through tales of individual experience.

At the converted warehouses in Port Vila, where the theatre is based, members of the Rainbow Group spoke of their recent play, ‘Ae Blong Hem I Blaen Nomo’ (He is Blind). The production, which is performed in the local Bislama language, recounts the life of a blind man – from the prejudices he faced at school and in his village to his adult years when he was brought back from the brink of suicide by the realisation that he could lead a full and meaningful life.

The play has had 50-60 performances in communities on the main island of Efate, where Port Vila is situated. Last year, the group took the production to rural areas and toured 30 villages on the island of Tanna, part of Vanuatu’s southernmost Tafea Province.

“At first, when we got off the bus or the truck, people just watched us like they had never seen people with disabilities,” youth actor Sergio Moses recounted. “But after we did the play, they didn’t see our disabilities anymore. They came and shook our hands and congratulated us on the play. They were amazed.”

Ellison Bovu, executive director of the Vanuatu Society for Disabled People (VSDP), which advocates for social integration, told IPS that one of the obstacles they were addressing was that many people in the community, including families and educational institutions, do not believe that disabled people have the ability to achieve much in life or perform well in school.

Challenging social perceptions is one of the Rainbow Theatre Group’s key aims and every performance is accompanied by a workshop with the audience, which encourages a two-way dialogue for the audience to learn more about disability rights.

“We have each actor talk about one of their achievements in life, such as running or wheelchair tennis, and we also go into schools, encourage discussion and answer children’s questions,” explained Francis Rurunavira, the group’s coordinator.

An estimated 17 percent of Pacific Islanders and 12 percent of people in Vanuatu have some form of disability. According to Sam Kaiapam, disability rights officer at the ministry of justice and community services, more accurate statistics will be available by the end of July when a report of the first disability survey in the country is completed.

The survey is part of the Vanuatu Government’s commitment to the recognition and rights of disabled people in all areas of life.

The year after ratifying the United Nations Convention on the Rights of Persons with Disabilities in 2008, Vanuatu established a National Disability Policy and Action Plan, followed by a National Inclusive Education Policy in 2011. A multi-stakeholder National Disability Committee, coordinated through committees set up in the country’s six provinces, has been active since 2012.

The United Nations Children’s Fund (UNICEF) reports that Pacific Island communities tend to be overly protective of children with special needs, and families can view public and school environments as unsafe or containing too many physical barriers to mobility.

For VSDP, which works with the government to implement policies regarding disability, identifying children with special needs at a young age and improving their access to education is vital to tackling the high levels of unemployment and poverty that can impact them in adulthood. Less than 10 percent of children with disabilities in the Asia Pacific region attend school, resulting in a regional unemployment rate for people with physical disabilities of 50 to 90 percent.

The Rainbow Theatre Group is playing a crucial role in bringing more special-needs children into education.

Rachael Tarbo, one of the group’s caregivers, observed that “as a result of the group going out and performing in villages, more children with needs have been identified in rural areas and some have now been registered to go to early education classes.”

Since 2006, VSDP has hosted an early childhood activity programme, which prepares children for kindergarten.

In December last year, the theatre group was one of six organisations and individuals honoured at the Pacific Human Rights Awards organised by the Secretariat of the Pacific Community in Suva, Fiji.

The biennial awards celebrate outstanding initiatives to protect and promote human rights in the Pacific Islands.

For the group’s members, the award signified the important recognition that they “don’t just talk”, but actually make a difference in the lives of people with disabilities.

(END)

The media and public perception play a role in how different conditions are treated and how the disabled view themselves. Credit: Bigstock

By Samuel Oakford
UNITED NATIONS, Oct 2 2013 (IPS)

When U.N. Secretary-General Ban Ki-moon opened a recent high-level meeting on disability and development that promised a place for the issue in the post-2015 agenda, he cited three examples of incapacity.

All three were stories of children or adolescents, even though the World Health Organisation estimates nearly 200 million adults have a functional difficulty.When aid is “solutionist", it only looks for problems where data lies, like the drunk who searches for his keys under a streetlamp and not where he dropped them.

Ban’s comments illustrate what many see as a key difficulty in representing disability, both in language and in the democratic decision-making process.

Activists say the lack of attention at the international level is not simply an oversight but a product of a confused conception of disability and the unique experiences of different groups of disabled people.

The reality, they argue, is that certain classes of disabled people coincide more easily with the orientation of international guidelines for healthcare intervention and with public understanding of health.

A dominant assumption in interventions is that “we save people because when we save them they are going to have a full life and produce a lot, so society benefits,” said Bruce Jennings, director of bioethics at the Centre for Humans and Nature and a lecturer at Yale University.

Saving lives means a country will have a more reliable workforce, a guarantee of vital importance in places like Sub-Saharan Africa where populations have been ravaged by HIV/AIDS.

But a focus on mortality puts those with severe and cognitive disabilities in a precarious limbo.

“What is the rationale for spending a great deal of resources for supporting the quality of life of people with severe cognitive problems when the usual answer our society gives for spending resources in healthcare is future productivity?” Jennings told IPS.

In developing countries, where 80 percent of the world’s disabled live, social integration and sustained healthcare for them can be financially unpalatable to governments when set alongside well-subsidised international measures that focus on vaccines for polio or cutting edge treatments for AIDS.

Programmes that focus on pharmaceutical solutions are seen as easier to account for in cost-benefit terms.

But for the disabled, there is often no pill to end their distress or help overcome social barriers. For severe cases, years of rehabilitation and attention from public sector healthcare are required.

“It’s a difficult subject to bring up,” said Antony Duttine, rehabilitation advisor at Handicap International.

“It’s perceived as quite costly to provide care and support but equally it’s a moral and legal issue that you have to look into.”

Whose voice?

As is true for many activists, those with first-hand experience of disability are often the clearest voices for progress.

“We need to include people with disabilities not just as the beneficiaries but the participants,” said MP Reen Kachere, minister of disability and elderly affairs in Malawi.

Participation is especially important in developing countries, said Kachere, where international projects have to navigate the historical question of paternalism.

“The disability advocacy community has very much been oriented towards inclusiveness and participation of individuals with impairments in the decision-making processes,” Jennings said.

A common refrain among advocates is “nothing decided for us without us.”

But participation raises the question of representation, he said.

“I’m not sure someone who has experience living in a wheelchair is a good representative for someone with cognitive impairments,” noted Jennings.

Because of how varied conditions are, differences arise in how integrated the disabled feel in society.

“It is relatively easier for a person who is blind or a person with physical disability to access services, but there is much more stigma attached to cognitive disabilities,” said Gopal Mitra, a programme specialist for children with disabilities at UNICEF.

“Disability is not a homogeneous group,” he told IPS.

The media and public perception play a role in how different conditions are treated and how the disabled view themselves.

In the United States, victims who lost limbs when bombs went off at the Apr. 15 Boston marathon have received millions in crowd-sourced medical care. At the same time, more than 50,000 U.S. diabetes patients undergo lower extremity amputations each year. Worldwide, someone loses a leg to diabetes every 30 seconds. All of them will require lifetime care.

Images of children or victims of a tragedy are easier to digest for the public than those whose descent into incapacity is slow or genetic. Physical disabilities are easier to understand than mental ones, and as a result societies are more likely to allocate money to that which they can comprehend, said Jennings.

“There is an image of the disabled as being physically limited and cognitively sound,” he said. “By having the public have a person in a wheelchair be the paradigm of disability in their mind and thinking that we deal with disability if we have wide doors and lifts on public buses is an unfortunate mistake.”

Even as organisations catch up with contemporary theory on the fluidity of gender and sexual orientation or the vastness of the disability spectrum, their efforts can still be constrained.

The problem, as disability activists see it, comes in large part from the total lack of language concerning the disabled in U.N. Millennium Development Goals (MDGs). See Part One

The result can be a self-perpetuating cycle.

“Countries are not tracking and reporting progress on children and adults with disabilities as far as MDG achievements are concerned,” said Mitra. “Countries are not connecting data. Unless you have numbers, it is difficult to plan or allocate resources.

“However, the point is 15 percent of the world’s population is people with disability. If you don’t include this 15 percent no development goals can be achieved.”

At its worst, say critics, when international aid is “solutionist”, it only looks for problems where data lies, like the drunk who searches for his keys under a streetlamp and not where he dropped them. And disability is notoriously hard to define and track.

Though an understanding of the different forms of disability may allow society to better help, the ultimate solution may be the idea of a common shared experience.

“I think the rational is solidarity, empathy, dignity, mutuality, equality and respect,” says Jennings. “It’s very hard to put a metric on those.”

Excerpt:

Orlando Javier Salgado Rubi (front, left), Minister Advisor on Disability Affairs of Honduras, speaks about the "The post-2015 development agenda and inclusive development for persons with disabilities" on Sept. 23, 2013. Credit: UN Photo/Rick Bajornas

By Samuel Oakford
UNITED NATIONS, Oct 1 2013 (IPS)

Amidst the incomprehensible suffering that followed the 2010 earthquake in Haiti, international aid agencies rushed to provide services to the displaced and injured.

The lives of 4,000 severely wounded Haitians were saved by emergency amputations carried out by groups on the ground.“Money from international agencies focuses on diseases like malaria and HIV/AIDS and not disability.” -- Orlando Javier Salgado Rubi

Three years later, many of the NGOs have left, and the government of Haiti, still grappling with the disaster’s aftermath, will eventually have to be the primary care provider for tens of thousands of disabled survivors who will require a lifetime of medical services.

That handoff, even if coordinated with the best of intentions, is still fraught with the complexities of disability. If emergency life-saving care is a medically and morally indisputable need, the aftermath and care of the chronically disabled is anything but well-defined, particularly in the developing world, say experts.

“If someone has lost a leg in an earthquake, they need a replacement leg every few years for the rest of their life,” said Antony Duttine, a rehabilitation advisor at Handicap International.

“There’s a constant need for rehab or prosthetic services,” he told IPS.

But once a crisis or disaster falls out of the news cycle, capturing the focus of donors can be difficult, especially given disability’s wide spectrum, ranging from loss of limbs to severe cognitive impairment. See Part Two

The World Health Organisation estimates that even before the earthquake, Haiti was home to more than 800,000 people with disabilities. Their care can be overlooked when aid is earmarked for “crisis”.

Often the poorest and most marginalised in the world, the disabled are hurt more than anyone by policies that diminish or ignore the importance of basic, long-term care.

According to disability activists, the structure and language of international development goals can make the cards feel stacked against them.

International guidelines

In 2000, the then-189 member states of the U.N. agreed on a set of eight Millennium Development Goals (MDGs) that would guide international development through 2015. None of the eight included language regarding disability.

Shortly afterwards, groups wielding billions of dollars and mandates to save lives entered developing countries and infused their medical systems with never before seen levels of funding.

The assistance, however, went to very specific targets.

“Money from international agencies focuses on diseases like malaria and HIV/AIDS and not disability,” Orlando Javier Salgado Rubi, Honduran minister for disability affairs, told IPS.

With the cash came metrics and a pinhole focus on diseases that can be treated or prevented with the latest pharmaceuticals and vaccines. Unlike hard to ascertain measurements of broad quality of life improvements, the statistical successes of these targeted programmes are easily tracked.

The largest of the organisations involved in this push continues to be the Bill and Melinda Gates Foundation. As a result of their involvement in Africa, the pay for doctors working on HIV/AIDS grew significantly in many countries.

However, investigations have found this leads to a “brain drain” out of basic care and towards more high-profile diseases, severely undermining the viability of the existing healthcare system.

(The Bill and Melinda Gates Foundation did not respond to a request for comment.)

Basic and sustained care is of paramount importance to the disabled community. The availability of services, for instance, affects how a family is able to help their child, says Gopal Mitra, a programme specialist for children with disabilities at UNICEF.

“With lack of services, we see families hiding their disabled children because of stigma,” Mitra told IPS.

“But where there are rehabilitation services, families are much more positive and the solutions are more holistic, because at the end of the day the families want their child or adolescent family member to make the best in life,” said Mitra.

By any measure, MDG programmes have helped save lives, decrease malnutrition and put more children in schools. Yet as result of reductions in mortality, a greater number of children in the developing world are surviving illness, only to be left severely disabled.

“We are seeing more people with different kinds of impairments and disabilities,” said Duttine. “Children who might previously have died but now have survived can have brain damage and cerebral palsy or other birth impairments.”

Without parallel growth in long-term care, disabled survivors can be neglected, he says. This new responsibility can weigh on a national health system already depleted by the incentives offered by foundations.

International development guidelines are bereft of language on necessary follow-up, says Mitra.

“What about access to basic services for them? What about access to education, access to nutrition and healthcare. This is a problem.”

The attention span of the aid community is no greater than the metrics and guidelines that direct it, he says.

It was not until 2007 that the U.N. Convention on the Rights of Persons with Disability – with a few notable exceptions, including the United States – was signed and ratified.

On Sept. 23, the U.N. General Assembly was given over to a “High Level Meeting on Disability and Development.”

Thirteen years after the MDGs were first articulated, delegates promised that when the current set expires, the world’s largest minority would be included in post-2015 development goals with specific language.

“We believe that persons with disability should be held as beneficiaries in all development activities and as full participants in the development,” said Reen Kachere, Malawian minister of disability and elderly affairs.

Disability groups hailed the event. For representatives like Minister Rubi, who is blind, the convening was an important step and one he couldn’t have predicted until recently.

“When I lost my sight at 18, I never thought I would end up speaking on this issue at the U.N.,” Rubi told IPS.

Groups like Handicap International are cautiously optimistic. They know that altering the conversation on a rights issue is a painstakingly slow process.

The sluggishness is no more evident than at the United Nations itself, where in the 2013 MDG Report, among its 59 pages, disability is mentioned but once. And only two days after the high-level meeting, when the issue should have been fresh in the minds, the release of an outcome document on achieving MDGs remarkably made no mention of the issue.

In Part Two of this series, IPS looks at why disability may have been ignored in international guidelines.

Excerpt:

Disaster Risk Management Project (DRM). An elderly person with a disability goes down the stairs of the Cyclone shelter in Mohanagar, Sitakunda, Bangladesh. Credit: Brice Blondel/Handicap International

By Lucy Westcott
UNITED NATIONS, Aug 20 2013 (IPS)

Upon first glance, the emergency checklist distributed in Haiti after the 2010 earthquake looks like any other. Organised into key categories like water, sanitation and hygiene, and psychosocial support, the information is typical of the kind circulated for emergency response.

But after a closer read, with recommendations for latrines to be built with a 90cm diameter so a wheelchair can turn around, and 80-cm-wide doors for wheelchair or crutch-users to pass through comfortably, it is clear that the checklist, distributed by Handicap International, was intended for persons with disabilities living in the disaster-ravaged country.“When we don’t include people with disabilities, that’s when the most deaths and casualties happen.” -- Fred Doulton of UN Enable

Natural disasters are common in many developing countries across the globe, and organisations like Handicap International are helping communities plan better for their disabled populations. There are between 2.9 and 4.2 million persons with disabilities among the world’s 42 million forcibly displaced population, according to data from the United Nations Refugee Agency (UNHCR).

For many people living with disabilities in developing countries, social stigma and cultural barriers prevent community cohesion, which is essential for emergency planning and preparedness, Annie Lafrenière, social inclusion and technical adviser at Handicap International, told IPS.

“People won’t speak about social barriers… they’ll talk about ramps [instead],” Lafrenière said. “[People with disabilities] are not considered the same as everyone else.”

Developing countries are vulnerable and at a higher risk of disasters because they are less prepared and equipped to deal with them, and not necessarily because they are more exposed to hazards, Lafrenière says. Persons with disabilities are often invisible to relief activities and unable to reach food or water checkpoints due to destroyed roads or non-accessible transportation.

“Meeting basic needs… remains a priority and often a challenge for communities affected by disasters, whether they are persons with or without disabilities,” Lafrenière says. “What our experiences have shown us… is that the presence of disability amplifies the impact of the disaster on a person’s life… and reduce[s] the range of strategies to cope with them.”

Inclusive planning is one improvement that can be made by communities in developing countries, and one that Handicap International stresses. It’s vital that disabled people are part of planning meetings and committees, as they help to spread awareness while offering their expertise.

“When we don’t include people with disabilities, that’s when the most deaths and casualties happen,” Fred Doulton, social affairs officer at UN Enable, which focuses on the rights of disabled people and is part of the United Nations Economic and Social Council (ECOSOC), told IPS. “By asking [people with disabilities] directly about what they think, you get to the core issues.”

The United Nations Office for Disaster Risk Reduction (UNISDR) recently released a survey asking persons with disabilities around the world about their experience living with and preparing for disasters.

In the Indonesian province of East Nusa Tenggara (NTT province), Handicap International is working with schools and children with disabilities and their families to improve awareness and response to disasters. The region is prone to flooding, landslides and whirlwinds; in 2012 there were 258 whirlwinds, 28 times the number recorded in 2002, according to Indonesia’s National Disaster Mitigation Agency (BNPB).

“We are implementing activities within the community to increase resilience to natural disasters, but we are also implementing activities within schools to be sure that children with disabilities will be taken into consideration,” Catherine Gillet, programme director for Handicap International in Indonesia/Timor-Leste, told IPS from the ground.

The NTT province consists of rural communities living in hilly areas and on dry and rocky land. The terrain can be treacherous, with communities staying either in valleys near the rivers, where there is a high risk of floods during the rainy season, or on the slopes of hills near areas suitable for crop cultivation, but where landslides pose a huge risk.

The children, mainly in grades three to five, raise awareness among their peers about disaster risk and are involved in risk assessment and identification. Disabled and non-disabled schoolchildren also demonstrate good practices for evacuation in disasters and work together in mock drills.

“For children with disabilities [the main challenge] is the problem of access, the problem of moving around,” Mathieu Dewerse, regional operational coordinator for Handicap International in Indonesia/Timor-Leste, told IPS.

“This is compounded in the case of disasters. If we think about a landslide, the road may be cut, there could be rocks on the road. If this is a child that uses crutches, it’s very hard to move around,” Dewerse says.

During past disasters, children with mobility disabilities have been supported by tricycles or motorbikes, Dewerse says.

For children with sensory impairments in the region, access to information is one of the main concerns. Communities have set up flag systems to compensate for the sound of an evacuation signal, which can’t be heard by children with hearing impairments, and have recruited friends and family to make sure they get away safely.

“Take the example of a child who doesn’t see. It’s a very big problem, especially if they have to evacuate quickly,” Dewerse says.

The provision of more mobility devices adapted to the needs of children with disabilities is an important step in helping communities the next time there is a flood or landslide, Dewerse says.

In the neighbouring Philippines, Handicap International replaced the cumbersome wheelchair of Joshua Degas, a 10-year-old boy with cerebral palsy, after Tropical Storm Washi in 2011, with one his own size, improving his future mobility in the face of potential disasters.

(See Part One and Part Two)

Excerpt:

A fisherman and other Gulf Coast residents at a community meeting in New Orleans in 2010. Experts say that trauma related to the record-breaking BP oil spill in the region could last for decades. Credit: Erika Blumenfeld/IPS

By Lucy Westcott
NEW YORK, Aug 15 2013 (IPS)

Although Hurricane Sandy made her final sweep through the Northeastern United States nearly 10 months ago, for many people the stress caused by the storm lingers.

(See Part One and Part Three of the series)

In Lower Manhattan, two hotlines, the Disaster Distress Helpline (DDH) and Project Hope, which is part of the New York City-wide helpline Lifenet, and specifically for those affected by Sandy, are at the frontline of disaster counselling, listening to myriad concerns ranging from queries about post-storm open hours of drug rehabilitation programmes to anxious parents reluctantly sending their children back to school in the days after the Newtown, Connecticut school shooting last December. Both programmes are administered by the Mental Health Association of New York City.

“Typically the kind of disasters that result in a spike of calls at the national level are those that are larger in scale. The impacts tend to be greater in terms of loss of life, loss of property or the potential for psychological distress on a sizeable population,” Christian Burgess, director of the DDH, told IPS.

Following the Sep. 11, 2001 attacks on New York City, there was a need for a nationwide, phone-based crisis counselling service, Burgess says. The Substance Abuse and Mental Health Services Administration (SAMHSA), an agency within the Department of Health and Human Services (DHHS) established the National Suicide Prevention Lifeline in 2005, but created an entirely separate hotline for disaster counselling after the 2010 BP oil spill.

Transitioning from the Oil Spill Distress Helpline, the DDH went live in February 2012, receiving its first major spike in calls following Hurricane Isaac, which tore through the Gulf Coast on the seven-year anniversary of Hurricane Katrina.

“It’s not therapy, it’s not a substitute for therapy. Really, it involves listening,” Burgess says, comparing the helpline to triage for mental health.

Counsellors are trained to listen for symptoms of distress that may indicate the need for crisis intervention, like suicidal or homicidal intent, and callers may also be at risk of depression or substance abuse.

The DDH saw spikes in calls after the Newtown shootings, in which a lone gunman killed 20 elementary school students and six staffers, and the Boston Marathon bombing in April, as well as the Oklahoma tornadoes in May.

“School shootings in particular tend to trigger stronger feelings of distress, simply because it’s easier for a large part of the population to identify with the sadness and grief,” Burgess says. “It shakes our foundation of what is supposed to happen, the order of things… especially if you were already feeling vulnerable before the event.”

Burgess says that the majority of calls following the Newtown shooting didn’t come from Connecticut, but from all over the country.

After a major disaster, repeated coverage on the 24-hour news cycle, sensationalised headlines and the easy accessibility of Internet allow for the vicarious trauma of rewatching distressing events, which adds to anxiety, Burgess says.

“The event in and of itself is traumatic… but it’s heightened by the constant media exposure, particularly for those who would have been at risk before the event,” Burgess said.

Trigger events still loom, like the State Department’s closure of 19 U.S. embassies across North Africa and the Middle East in early August. The DDH have received calls from people concerned about what the terror alert means, Burgess says.

Calls related to Hurricane Sandy marked the first time the DDH received sustained levels of calls over a period of time, Burgess says. At its peak, Sandy resulted in a 2,000 percent increase in calls from two weeks prior, before the forecasts began to take shape. Texts increased by 600 percent.

“In December we were starting to get longer calls from people, and mental health concerns were coming to the surface,” Burgess says, due to fewer resources and the emotional fatigue of still-displaced people.

Melany Avrut, programme manager for Project Hope, which has received nearly 4,000 calls since the hurricane, told IPS that the needs of callers have changed. In the weeks following the storm, callers wanted to know about filing FEMA applications, but six months later, there were more concerns about anxiety, mood and children having trouble sleeping.

“A big component of Project Hope is using your strength… recognising what [people] have used in the past to get them through a hard time,” Avrut says. “They want to talk about what it was like to go through this traumatic experience.”

The World Health Organization (WHO) recently released new guidelines on how to care for those with mental health issues following trauma. The guidelines emphasise the use of behavioural therapies, such as cognitive-behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR) rather than relying on medications.

Although unusual, EMDR can be effective, Dr. Mark van Ommeren, a scientist in the WHO’s department of mental health and substance abuse, told IPS.

It likely works when a patient, focusing on the traumatic event, follows a therapist’s hand with their eyes. The working memory is taxed as the patient thinks about both the event and their eyes working to track the hand. The painful memory becomes less prominent, and upon revisiting the memory, it is less vivid and emotional in the long-term memory, van Ommeren says.

For people living in disaster areas who are vulnerable to mental health issues, van Ommeren suggests that stress management is a good way to prepare, as it makes going through difficult moments a slightly easier, adding that there are no concrete studies about this.

To contact the Disaster Distress Helpline, call 1-800-985-5990, or text “TalkWithUs” to 66746. To contact Project Hope, call 1-800-LIFENET (1-800-543-3638). 

Excerpt:

By Lucy Westcott
NEW YORK, Aug 14 2013 (IPS)

Like many people living in the path of Hurricane Sandy last fall, Lauren Scrivo needed more battery power. Despite a call offering help from the mayor of Fairfield, New Jersey, where Scrivo lives with her family, her concerns went far beyond extra water bottles and flashlights.

An emergency shelter at Seward Park High School in Lower Manhattan during Hurricane Sandy that disabled people had a hard time accessing. Credit: Center for Independence of the Disabled, New York (CIDNY)

Scrivo, a communications specialist at the Kessler Foundation, has a form of muscular dystrophy and uses a ventilator and power wheelchair. When the electricity went down during the storm, she only had battery power to fuel the machine; leaving the generator running outside was too risky.

“When we lost power it was a little scary, we didn’t know how long it would be for. I couldn’t leave the generator running at night because people were stealing them, so [I] had to use battery power,” Scrivo told IPS.

The gas shortage also presented an enormous danger for Scrivo as her generator began to run low on fuel.

“You can’t just go out and stand in the gas line,” she said. “If we couldn’t fuel our generator, we wouldn’t have been able to recharge my [ventilator] batteries or use my other necessary medical equipment.”

Now Scrivo, along with the global disabled community, will have the opportunity to voice her concerns after the United Nations Office for Disaster Risk Reduction (UNISDR) launched a survey asking people with disabilities about their experience living with and preparing for disasters.

The survey, believed to be the first time global data on emergency planning and disabilities is being collected, asks participants what kind of emergency, from landslides to insect infestations, their communities are vulnerable to, and whether they have been involved in municipal emergency management planning.

“We know from a number of major disasters that disabled people are overlooked… twice as many [disabled] people died in the Fukushima disaster [than non-disabled people],” Denis McClean, spokesperson for UNISDR, told IPS from Geneva.

Roughly 10 percent of the world’s population is living with a disability, according to data from UN Enable, the United Nations body that focuses on disability issues.

“It’s quite clear that we need to pay more attention and talk to disabled people,” McClean said, adding that disabled people are at a particular disadvantage when it comes to early response in emergencies.

New York City’s disabled population, which numbers over 800,000 according to data from the Center for Independence of the Disabled, New York (CIDNY), recently had to deal with devastation from Sandy.

During the storm, there were 118,000 disabled people in the Zone 1 evacuation area alone, according to CIDNY.

Milagros Franco, a disaster case manager for Sandy survivors at the Brooklyn Centre for Independence of the Disabled (BCID), believes that disaster planning and response for disabled people in New York City is inadequate.

“I was kind of snobbish… I got some food beforehand, I had two flashlights. I live in Manhattan, so I didn’t expect the lights to go out,” Franco, who has cerebral palsy and uses a power wheelchair, told IPS.

The day before Sandy made landfall in New York, Franco’s superintendent told her the building’s elevator would be shut down as the lobby of her East 21st Street building is prone to flooding. Although she lives on the second floor, “When you’re in a wheelchair, that’s pretty far,” Franco says.

Franco was stuck in her building for three days, but did have a friend with her who ventured to 34th Street for food and phone recharging. In lieu of the buzzer system, which was a victim of the power outage, Franco lowered her keys, tied to a piece of rope, out her window to let her friend inside.

But some people aren’t so lucky to have a support system, said Margi Trapani, communications and education director at CIDNY. Enlisting the support of family and friends is one of the main ways the City of New York tells disabled people to prepare for disasters, along with preparing a “go bag” of emergency supplies and knowing how and when to evacuate.

Trapani’s organisation, alongside BCID and two individual plaintiffs, filed a lawsuit against Mayor Michael Bloomberg and the City of New York in 2011 after perceiving a lack of help from the city for people with disabilities during disasters in the decade following the Sep. 11, 2001 attacks. The case was heard in March, with the judge’s ruling expected at the end of the summer.

“During 9/11, people with disabilities had been left off the map,” Trapani told IPS. “There were a lot of respiratory problems and mental health issues [after], tonnes of issues no one was prepared to deal with.”

Hurricane Sandy revealed the inadequacy of emergency shelters for the city’s disabled population. Issues with the shelters include non-accessible and stairs-only entrances, lack of accessible bathrooms and cots, and staff who are underprepared to respond to disabled people, Trapani says.

More inclusion of disabled community in the emergency management planning process is a step the city can take to improve its response, Trapani says.

“Our community can help in these situations… we’re experts in figuring out how to deal with problems,” she says.

When a disaster strikes at short notice, there is sometimes a limit to how ready people can be.

“No matter how prepared you think you are, you’re never prepared until after the fact,” Franco said, adding that at least now she has a hand-crank radio.

(See Part Two and Part Three of the series)

Excerpt:

Underlining the persistent power of their party’s most right-wing elements, a majority of Republican senators Tuesday blocked ratification of the long-pending International Convention on the Rights of Persons With Disabilities (CRPD).

Sen. John McCain, who suffered life-crippling injuries as a result of his plane crash over North Vietnam and subsequent mistreatment as a prisoner-of-war, issued a strong appeal for a favourable vote. Credit: Chris “Mojo” Denbow/cc by 2.0

While sixty-one senators, including a number of senior Republicans, voted to ratify the treaty, it fell five votes short of the required two-thirds needed for ratification under the U.S. constitution. Thirty-eight senators – all Republicans – voted to oppose it.

Nonetheless, the Majority Leader, Sen. Harry Reed, vowed to bring up the treaty for another vote when a new Congress, which will include two additional Democratic senators, convenes next year.

Independent analysts agreed that ratification would indeed be possible because several Republicans who had previously indicated they favoured the treaty changed their position at the last moment.

“I plan to bring this treaty up for a vote again in the next Congress,” Reid said after the vote, which was roundly denounced by human rights and disability groups. “Our wounded veterans and millions more around the world deserve better.”

The White House, which some activists criticised for not lobbying more strongly for the treaty, also expressed disappointment with the result, noting that ratification “would improve the lives of Americans with disabilities – including our wounded service members – who wish to live, work, and travel abroad.”

The Convention was initially negotiated by the administration of former Republican President George H.W. Bush and was largely based on the landmark Americans for Disabilities Act (ADA) that Bush signed into law in 1990. It is one of half a dozen treaties Barack Obama had prioritised for ratification when he became president in 2009. He signed the treaty shortly after taking office.

Besides the disability treaty, the Law of the Sea Treaty (LOST) and the 1979 Convention on the Elimination of Discrimination Against Women were also given top priority.

But none has been ratified due to opposition by Republicans, a majority of whom have argued that international treaties unduly constrain Washington’s freedom of action in the world or threaten U.S. sovereignty.

“The treaty threatens U.S. sovereignty through the establishment of the unelected U.N. bureaucratic bodies called the Committee on the Rights of Persons with Disabilities and a Conference of States Parties that would implement the Treaty and pass so-called ‘recommendations’ that would be forced upon the U.S. as a signatory,” said Oklahoma Republican Jim Inhofe after the vote.

“The ability of (that committee) to investigate and recommend changes also chips away at the ability of a sovereign nation to govern itself.”

The Convention, which was opened for signature in 2007 and entered into force a year later, bans discrimination against people with disabilities and promotes their dignity, independence, and full participation in society. It has been signed by 154 nations and ratified by 126.

“U.S. leadership has been influential in putting disability rights issues on the international agenda, but the Senate vote is a big step backward,” said Antonio Ginatta, US advocacy director at Human Rights Watch.

“Ratifying the treaty would have built on the U.S. commitment to the values embodied in the (ADA) and provided the framework to advance and promote the rights of people with disabilities globally,” he noted.

The treaty’s provisions are considered fully consistent with the ADA, which was approved by the Senate, including a large majority of Republicans, by a 91-6 margin 22 years ago – testimony to how far the party has moved to the right in the two decades since.

Indeed, Republican opposition was particularly remarkable in light of the efforts by two former Republican presidential nominees – both wounded war veterans, no less – to lobby their party colleagues up to the very last minute to vote yes.

Sen. John McCain, the party’s 2008 candidate who suffered life-crippling injuries as a result of his plane crash over North Vietnam and subsequent mistreatment as a prisoner-of-war, issued a strong appeal for a favourable vote, while 89-year-old former Sen. Robert Dole, the 1996 presidential nominee whose arm was shattered during World War II, made an extraordinary and dramatic appearance on the Senate floor in support of the treaty.

“This is one of the saddest days I’ve seen in almost 28 years in the Senate, and it needs to be a wake-up call about a broken institution that’s letting down the American people,” said Senate Foreign Relations Committee Chairman Sen. John Kerry, who led the floor fight and is reportedly on Obama’s shortlist to succeed Hillary Clinton as secretary of state.

“This treaty was supported by every veterans group in America, and Bob Dole made an inspiring and courageous personal journey back to the Senate to fight for it,” he said. “It had bipartisan support, and it had the facts on its side, and yet for one ugly vote, none of that seemed to matter.”

But the opposition, including the Republican leadership, was determined. After the Nov. 6 elections, no less than 36 Republican senators – enough to block any ratification – signed on to a letter opposing consideration of any treaty during the current “lame-duck” session of Congress.

Preventing ratification of the disabilities treaty also became post-election crusade of far-right former Pennsylvania Sen. Rick Santorum, a disappointed rival of Mitt Romney’s for the 2012 presidential nomination whose well-funded political action committee, Patriot Voices, mobilised its Tea Party supporters around the country. The far-right Heritage Foundation also campaigned against the treaty.

Last week, Santorum, during a press conference featuring his own four-year-old severely disabled daughter Bella, who was born with Trisomy 18, argued that the treaty’s “best interests of the child” standard could result in the government’s determining that she was not entitled to special treatment that was designed to keep her alive.

“Now that the CRPD is defeated, we know that the United Nations won’t have oversight of how we care for our special needs kids,” Santorum said after Tuesday’s vote.

Santorum and other treaty foes also mobilised opposition from the growing home-school movement, whose roots lie in the 1960s “counter-culture” but which now consists mostly of Evangelical Christians and Tea Party activists.

“I and many of my constituents who home-school or send their children to religious schools have justifiable doubt that a foreign body based in Geneva, Switzerland, should be deciding what is best for a child at home in Utah,” Utah Sen. Mike Lee, who also objected to the reporting requirements included in the treaty, told The National Review this week.

But these reasons were mocked by the treaty’s backers who said the Republican position recalled the right-wing paranoia of the early 1990s when members of the so-called “militia movement” raised alarms about alleged “black helicopters” from the U.N. running surveillance flights over the U.S. heartland.

“The 38 senate curmudgeons who voted down this treaty remain stuck in a partisan twilight zone of U.N. black helicopters and conspiracy theories – even when the U.S. Chamber of Commerce, veterans groups, and disabilities rights organisations were clear about what was best for the nation and the world,” said Don Kraus of Citizens for Global Solutions, a national grassroots group.

*Jim Lobe’s blog on U.S. foreign policy can be read at http://www.lobelog.com.

As a child, Feruza Alimova dreamed of becoming a lawyer so she could help disabled people.

But the 22-year-old cannot pursue a law degree because a bone deformity keeps her homebound. Her parents, who make a living growing cotton and tobacco in the Kyrgyzstani hamlet of Chekabad, in the Ferghana Valley, spend a large chunk of their income on expensive medications for Feruza and two other children suffering a similar bone condition.

Mukhabat, Feruza’s mother, says neighbours blamed her and her husband for their children’s disabilities. “We were also ashamed at the beginning, but gradually we decided that what mattered is not the opinions of others, but the happiness of our children,” Mukhabat told EurasiaNet.org.

Because public minibuses do not accommodate her wheelchair, Feruza could not attend law school. Instead, last year she completed a knitting course offered by a local vocational school.

Across Central Asia, hundreds of thousands of disabled people are unable to attend school because they live in a world with few handicap-accessible amenities, according to the State Department’s 2011 Human Rights reports for Uzbekistan, Kyrgyzstan, and Tajikistan.

In Tajikistan, the law “requires government buildings, schools, hospitals, and transportation to be accessible to persons with disabilities, but the government did not enforce these provisions,” the report states.

In Uzbekistan, the State Department maintains that disabled Uzbeks are stigmatised and educational opportunities are limited for those unable to walk on their own. “Many of the high schools constructed in recent years have exterior ramps, but no interior modifications that would allow wheelchair accessibility,” the report stated.

Civil society groups say Central Asian governments are resistant to addressing the issue.

“Authorities (across the region) view a disability as a medical ailment that can be treated, and not as a social condition that needs to be accepted by society,” said Azat Israilov of Kelechek, a Bishkek-based non-governmental organisation that works with disabled children. As a result, state assistance is often limited to monthly payments to help cover medicine, he said.

In a continuation of Soviet-era practices, all of the Central Asian republics divide disabilities into three groups. People with “category one” disabilities are completely dependent on others for care; people in “category two” can take care of themselves with assistance (blindness, some intellectual disabilities, and bone deformities fall into this category); “category three” can include impaired vision and rheumatism. State-run medical commissions assign the categories.

According to official data, in Kyrgyzstan, Tajikistan, and Uzbekistan, individuals in category one receive up to 70 dollars per month; no precise figure is available for Kazakhstan, though the number is sometimes reported as 100 dollars.

The cash is welcome, but nothing like the benefits that disabled people received a generation ago, before the Soviet Union collapsed.

“During the Soviet period, we (disabled people) enjoyed many privileges such as free healthcare, state subsidies, and allowances. Now most of these perks are gone,” said Ilkhom Madumarov, a Tashkent resident in his late fifties who, missing a leg, is in category two.

Mukhabat, Feruza’s mother, says the cash benefits for her children, whose disabilities all fall into category one, is not enough to cover their monthly treatment. But it’s not the size of the payments that makes her angry.

“What my children need is not just small monetary compensation; they want to be treated like everyone else. The government needs to create conditions in which children like mine can function like normal people despite their disabilities,” she said, such as access to schools.

For years, international aid agencies have promoted reform. But in recent years, their support has dwindled. Following the May 2005 massacre in Andijan, a suspicious central government in Tashkent forced many foreign non-governmental organisations out of Uzbekistan. And since the 2010 political turmoil in Kyrgyzstan, Israilov of Kelechek complains, much of the donor community’s attention has focused on post-conflict reconstruction efforts.

In some cases, too, aid agencies appear to be suffering from donor fatigue. Despite pressure from international development outfits, endemic corruption and bureaucracy have hampered reform efforts, aid workers say privately.

For example, given the monetary compensations and other perks associated with disability status (people with disabilities pay lower taxes, obtain subsidised medical treatment at state-funded clinics, and receive discounts when using public transportation), government disability commissions throughout Central Asia often try to extort bribes from applicants, some of whom do not have disabilities.

A December 2010 law adopted by Uzbekistan’s parliament abolished financial payments for category three disabilities, a move that impacted 200,000 individuals, who lost monthly benefits of 60,000 sums (37 dollars) a month. Legislators said they were trying to make the system more efficient. Observers in Tashkent believe the law is also intended to crack down on corrupt government employees selling disability permits.

More generally, benefits seem to be on the chopping block in budgeted-squeezed Central Asian states. On Oct. 18, Kyrgyzstan’s government announced budget cuts that will affect social spending.

Some disabled people have taken radical measures to improve their plight. Since the April 2010 uprising in Kyrgyzstan, a group of disabled people have illegally occupied a mansion belonging to the ousted president’s hated son.

In Uzbekistan, meanwhile, a group of people with disabilities petitioned several independent news outlets in March, blowing the whistle on alleged infighting within the Society for Disabled People of Uzbekistan, a quasi-government agency that administers some of the state’s assistance programmes. The petition claimed the Society is rife with corruption and nepotism.

Such outspoken criticism of the government is rare in Uzbekistan and often punished severely. “These protest letters indicate the extent of despair,” said a local teacher familiar with the campaign.

*Editor’s note: Alisher Khamidov is a researcher specialising in Central Asian affairs.

This story was originally published by EurasiaNet.org.

In 1996, Maria Mamerita Mestanza Chavez, a 33-year-old Peruvian mother of seven, was threatened with imprisonment if she did not comply with the government policy of undergoing sterilisation. After suffering post-operative complications for which she was refused treatment, Chavez died nine days later.

After years of legal proceedings in the Inter-American Commission on Human Rights (IACHR), in 2003 the Peruvian government finally acknowledged international legal responsibility for its actions.

Chavez’s story is not the only case in which national law has forced women to undergo involuntary sterilisation. Although many women’s and disability rights organisations and other human rights bodies have condemned coercive sterilisation, thousands of women and girls worldwide are still denied the right to make decisions about their own reproduction.

Participants on the first day of the Fifth Session on the Conference of States Parties to the Convention of the Rights of Persons with Disabilities, hosted by the U.N. Sep. 12-14, 2012. Credit: UN Photo/Rick Bajornas

Involuntary sterilisation, an operation which, without an individual’s consent, permanently ends his or her ability to reproduce, has occurred in regions with many different cultural backgrounds, ranging from the United States and Switzerland to Japan, China, Puerto Rico, Brazil and others.

The operation “has historically targeted…marginalised groups of women such as women with disabilities, women from ethnic minorities, indigenous women, low-income women and women living with HIV”, said Luisa Cabal, vice president of the New York-based Centre for Reproductive Rights, at a side event organised by the World Health Organisation (WHO) at the U.N. headquarters Sep. 13.

WHO estimates that over a billion people in the world, or approximately 15 percent of the global population, have disabilities.  According to a WHO report, disabled women are particularly vulnerable to involuntary sterilisation.

Forced sterilisations on disabled women are often performed under the auspices of medical legal services or with the consent of court-appointed guardians, who have the authority to decide on behalf of the patient. Various justifications are offered for the procedure, including disabled women’s inability to parent, protection from sexual exploitation and abuse, population control, or so-called menstrual management.

An international approach

The United Nations Convention on the Rights of People with Disabilities (CRPD), adopted in 2006 and ratified so far by 119 countries, recognises that disabled individuals have the right to make decisions freely and responsibly regarding their reproductive lives.

These rights and others were discussed at the Fifth Session of the Conference of States Parties to the CRPD, which concluded at U.N. headquarters Sep. 14. This year’s conference focused on women and children.

Strongly advocating the rights of women with disabilities at the conference was Prince Zeid Ra’ad Zeid Al-Hussein, Jordan’s ambassador and permanent representative to the United Nations.

In his remarks at the opening session, Hussein outlined the role Jordan’s Higher Council for Affairs of Persons with Disabilities (HCD) has played in raising awareness of and advocating for the rights of Jordanian women with disabilities who are subject to sterilisation, which he called a “misconceived and shameful practise”.

“The committee targeted parents, doctors and gynecologists, legal experts and judges as well as religious leaders to address this issue,” Hussein explained.

Despite the existence of the CRPD, disability is not even explicitly mentioned in the U.N.’s Millennium Development Goals (MDGs), pointed out Ahmed Abul Kheir, Egypt’s ambassador and advisor to the Minister of Social Affairs. He urged the U.N. to tackle the issue at a high-level meeting of the General Assembly on disability and development in September 2013.

Government accountability

In 2011 five women with mental disabilities brought their case before the European Court of Human Rights. Each had involuntary undergone the process of tubal ligation without their informed consent. This case, Gauer and Others vs. France, remains open but is considered best example of how involuntary sterilisation can be effectively tackled by international institutions.

“A positive decision from the court in this important case would have a tremendous impact on reinforcing the autonomy of women with disabilities with respect to their reproductive health,” said Yannis Vardakastanis, president of the Brussels-based European Disability Forum, in a press release.

“States are under an obligation to take measures to prevent such violations and to investigate and prosecute them to the fullest extent when they do occur,” he added.

Nevertheless, preventive measures and support services are often limited and insufficient, according to Cabal, the Centre for Reproductive Rights vice president.

“Governments and health institutions have weak or inadequately implemented informed consent policies, guidelines, procedures to protect patient rights,” she said. “There is very little accountability for the ethical and human rights violations.”

“The human rights obligations of each state requires the adoption of all necessary measures – legislative, budgetary, judicial and administrative – to ensure women with disabilities access to reproductive health services,” Cabal told IPS. States must also establish accountability mechanisms to ensure laws and policies are fully implemented.

Moreover, victims of forced sterilisation must have access to the court system to vindicate their rights, Cabal said.

According to Erszébet Földesi, the vice president of the European Disability Forum, one of the main challenges preventing forced sterilisations is providing women with disabilities with appropriate information about their sexual and reproductive health care options. Another challenge is obtaining their free, full and informed consent to such procedures.

Health professionals ought to be “trained to deal with and assist women with disabilities in the area of sexuality and reproductive health and motherhood”, she added.

Asked what support must be delivered to the victims of forced sterilisation, Földesi told IPS that victims must have access to “recovery, rehabilitation and social integration”.

Highlighting the issue through social media networks or elsewhere online could help raise the awareness of the general public and policymakers about forced sterilisations, Földesi added.