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

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:

Kerala Chief Minister Oommen Chandy hands a memento to a disabled student at a ceremony in Thiruvananthapuram, India Credit: K. S. Harikrishnan/IPS

By K. S. Harikrishnan
THIRUVANANTHAPURAM, India , Dec 22 2012 (IPS)

Twenty-year-old Reshma, hailing from the village of Aryanad in the Thiruvananthapuram district of the South Indian state of Kerala, was forced to drop out of school early as a result of obsessive-compulsive disorder (OCD).

Her parents had just about given up hope on their daughter’s future when she received admission to the Centre for Disability Studies (CDS) in Thiruvananthapuram city.

After six months of counselling, which included the unusual but proven method of horticultural therapy, they began to notice a world of change in Reshma’s life and habits.

Reshma has now developed confidence in practical and social skills. With her parents’ help, she uses gardening as a means of therapy.

After a long absence, she has returned to school to complete her studies.

CDS Director Dr. G. K. Beela told IPS that numerous studies on the programme reveal that horticultural therapy has a significant impact on the development of self-esteem and motor skills in mentally and physically challenged children.

“Horticultural therapists work with people who are disabled or disadvantaged by age, circumstance and ability. Kerala is the first Indian state to adopt the therapy systematically,” she said, adding that there is an urgent need to apply the method on a national scale to meet the needs of India’s disabled.

The National Census of 2001 revealed that over 21 million people in India were suffering from some kind of disability. Indian demographers roughly estimated that the number of disabled persons increased to 70 million this year.

Experts participating in a recent national seminar on disability in Thiruvananthapuram stressed the need for a multi-disciplinary approach to rehabilitation and therapy, against the backdrop of a growing number of disabled persons in the country.

Merru Baura, director of the non-profit ‘Action for Autism’ in New Delhi, said that the rights of the disabled should be protected and alternative forms of treatment explored.

For many years, rights activists have been urging the Union Government to formulate a comprehensive policy to address the needs of the disabled, rather than prolong the current system, which has splintered laws and policies regarding disabilities into individual acts and processes.

Following fervent appeals by various rights groups, the ministry of social justice and empowerment constituted a committee in 2010 under the chairpersonship of Dr. Sudha Kaul, vice-chairperson of the Indian Institute of Cerebral Palsy in Kolkata, to draft new legislation to replace the existing laws.

Protection of the rights of disabled women, in accordance with the United Nations Convention on the Rights of Persons with Disabilities, is also a great concern for activists here.

Jaya Edappal, a disabled lawyer in Malappuram, told IPS that developing and maintaining mechanisms that increase the participation and representation of disabled women in all decision-making areas would improve the status of disabled women in the minds of the public.

“The government should provide…services (such as social services, employment and priority in bank loans) and programmes to disabled women and give clear rationale for the development of specific programmes,” she suggested.

India is a signatory to the Declaration on the Full Participation and Equality of People with Disabilities in the Asia-Pacific Region and the Biwako Millennium Framework for action towards an inclusive, barrier-free and rights-based society.

Thus analysts are urging the Union Government to uphold its commitments on paper and put into practice a broad policy on disability management with prevention, early detection, and early intervention systems, as well as occupational training and a uniform curriculum nationwide.

Few government-run educational institutions have committed to providing equally for all students, according to Dr. J.V. Asha, post-doctoral research fellow at the Indian Council for Social Science Research in New Delhi. Differently-abled students continue to suffer from marginalisation as a result of visual, hearing, speech or orthopaedic impairments.

A recent study on academic achievements and intellectual skills of differently-abled children in the Kollam district of Kerala, conducted by Dr. V. Biji, a lecturer in clinical psychology at the Institute for Communicative and Cognitive Neurosciences in Thiruvananthapuram, showed that academic performance was extremely low among the lower socio-economic group.

“Parents’ awareness about disability and rehabilitation treatment programmes was poor,” the study found.

Social activists have suggested that a governmental policy on integrating rural development issues and upgrading agricultural production technologies to meet the special requirements of the handicapped will enhance the life chances and prosperity of disabled people living in rural India.

Suman Prasad, director of Jan Abhiyan Parishad, a governmental organisation set up for promoting the constructive interference of NGOs in development work in the central Indian state of Madhya Pradesh, said at the conference in Thiruvananthapuram that the rural disabled are the most vulnerable group in the country and protecting them is the “need of the hour”.

A 2008 World Bank report on disabilities in India found that low literacy rates, few jobs and widespread social stigma had also made disabled people among the most excluded in the country.

“Assisting disabled people is an integral part of achieving developmental goals. It is necessary to improve income generating and employment opportunities for the disabled in rural areas,” Prasad stressed.

A large number of disabilities in India are preventable, including those arising from medical issues during birth, malnutrition, as well as accidents and injury. However, the health sector is yet to react more proactively to disability, especially in rural areas, the report said.

(END)