One in three people in the UK changed their attitude towards disability thanks to the London 2012 Paralympic Games. Employment for persons with disabilities in the United Kingdom grew by nearly one million since June 2013. Pictured here is an athletics event from the London 2012 Paralympic Games. Credit: Nick Miller/CC By 2.0

By Tharanga Yakupitiyage
UNITED NATIONS, May 14 2019 (IPS)

The power of sport can help make global sustainable development a reality, and such power transcends cultural, linguistic and even physical barriers.

In recent years, disabled athletes have gained greater visibility—an essential step in recognising their talent, abilities, and importance.

In December, the United Nations General Assembly formally recognised the power of sport as an “enabler” of the Sustainable Development Goals (SDGs), including the “invaluable contribution” of the Paralympic Movement in promoting peace, development, and greater inclusion.

“[The Resolution] reaffirms the universality of sport and its unifying power to foster peace, education, gender equality and sustainable development at large,” International Olympic Committee’s (IOC) President Thomas Bach said.

“Thanks to the UN, we now have a strong tool that encourages states and sports organisations to work together and develop concrete best practices,” he added.

Deputy Secretary-General Amina Mohammed reiterated these sentiments recently, noting the important role that sport has played in all societies throughout history.

“Sport can help promote tolerance and respect, contribute to the empowerment of women and young people, and advance health, education and social inclusion,” she said on the International Day of Sport for Development and Peace.

“Let us intensify our shared efforts to achieving the Sustainable Development Goals (SDGs) and truly recognise the power of sport to change the lives of individuals, communities, countries and beyond,” Mohammed added.

Just last week, a campaign by the International Paralympic Committee was awarded with the UN Sustainable Development Goals Action Award.

The ‘Transforming Lives Makes Sense for Everyone’ campaign features three short films which reveal the impact of the London 2012 Paralympic Games on employment for persons with disabilities which, in the United Kingdom, grew by nearly one million since June 2013.

The group also found that one in three people in the UK changed their attitude towards disability thanks to the London games.

However, such work starts at the grassroots level.

In Nepal, the National Women’s Blind Cricket Team won the First International Women’s Blind Cricket Series held in Pakistan in February 2019, proving that women with disabilities can be successful competitive athletes.

“People living with disabilities often undermine their ability to play sports due to mobility restrictions and negative stereotypes and perceptions towards people living with disabilities. But despite these challenges, my team and I persisted,” said team captain Bhagwati Bhattarai-Baral.

“I feel proud to have represented my country in an international platform. It has also boosted my confidence and sense of leadership. People in my community have now started believing that blind players are as capable as anyone else. If provided with opportunities, women and girls with disabilities can also demonstrate competence,” she added.

Similarly, at the age of 12, Mohamed Mohasin’s passion for cricket grew as he started playing the sport with his classmates, despite having had polio as an infant which damaged his legs.

The sight of a batter in a wheelchair often drew his local community of Morkun in Bangladesh to watch him play.

Mohasin’s ambition did not stop there. Since wheelchair cricket players are excluded from Paralympic cricket, he asked himself, “Why not start a wheelchair cricket team?”

After a long road full of obstacles, including lack of funding and misperceptions, Mohasin finally established the Wheelchair Cricket Welfare Association Bangladesh (WCWAB) in 2010 and became the captain of the National Wheelchair Cricket Team to help ensure the participation of physically challenged youth as well as to showcase their talents.

“Earlier the scenario was too difficult as people very rarely imagined that the disabled can play outdoor games in Bangladesh. But we have proved through wheelchair cricket that this is possible,” Mohasin said.

“Things are now changing, and we are getting lots of interested people and players,” he added.

The team, which was formed with 26 players, has grown exponentially to around 200 players, 170 of whom are registered wheelchair cricketers.

They organised the first ever National Wheelchair Cricket Tournament in Bangladesh in 2016, and have since participated in major tournaments such as the International Committee of the Red Cross (ICRC) International Cricket Tournament in Bangladesh, Asia Cup in India, and won the Taj Mahal Trophy in 2014 as well as the International Bilateral Wheelchair T20 Cricket Series. Young Bangla, the largest youth forum in Bangladesh, also recognised Mohasin and WCWAB as one of the top 10 youth initiatives in the country.

Despite obstacles, Bhattarai-Baral and Mohasin both continue to inspire others and promote a future where disabled persons are recognised.

Participants of the first Disability Pride Parade in New York City in 2015. New York has a long way to go before their infrastructure becomes inclusive for people with disabilities. Courtesy: UN Photo

By Carmen Arroyo
UNITED NATIONS, Aug 22 2018 (IPS)

Even though over six billion people—nearly one billion of whom will have disabilities— are expected to live in urban centres by 2050, many of the world’s major urban cities have a long way to go before their infrastructure becomes inclusive for people with disabilities.

As the world’s population ages, in 2050, more than 20 percent will be 60 or older, making urban accessibility an urgent need, according to a report by the Disability Inclusive and Accessible Urban Development Network (DIAUD).

But some major cities, like New York, have a long way to go before their infrastructure becomes inclusive for people with disabilities.
The report Service Denied: Accessibility and the New York City Subway System, published in July, revealed that 24 percent of the subway stations in the city were not accessible to people with disabilities. In addition, 62 of 122 New York City neighbourhoods with subway lines did not have stations accessible under the ADA, most of them located in the Bronx, Brooklyn or Queens. Despite the city government’s efforts to ensure public transport accessibility, the subway seems a hard battle.

“New York City is a great city with a lot of history behind it, unfortunately much of its iconic infrastructure was constructed before anyone considered the needs of people with disabilities. Today it can be difficult for a person with a disability to navigate our century-old subway system,” Victor Calise, commissioner of the mayor’s Office for People with Disabilities in New York City, told IPS.

Since the adoption of the United Nations Convention on the Rights of Persons with Disabilities in 2006, which was seen as a human rights and development advancement, accessibility has gained momentum.

Also, the approval of the Americans with Disabilities Act (ADA) in 1990, and its consecutive implementation and amendment in 2008, ensured city government’s focus on inclusion. Although public transit, access to restaurants or office spaces, employment and education are some of the issues that urban accessibility includes; public infrastructure and housing remain the most important barriers in some major old cities, such as New York.

“The fact remains that to be a truly inclusive city we must continue the work to make our subway system equally accessible for all. Without equal transportation people with disabilities struggle to get to school, doctor’s appointments and their places of employment,” he added.

Asked what the current options, besides the subway, are for people with disabilities, Calise replied: “There are some alternatives in place, including a 100 percent accessible bus system, an increasingly accessible taxi fleet and a subscription-based paratransit service that costs the same as a subway ride.”

He explained that since mayor Bill De Blasio took office, improvements have been made, especially in the subway system.

“First, every subway system that is being built new (most recently the 2nd Avenue subway line) is being built with accessibility in mind. Second, with major renovations being done on subway stations we are also making necessary installations of elevators and other accessibility features while the work is being done.”

A further improvement has come from the taxi industry. “The TLC [New York City Taxi and Limousine Commission] has also expanded its Accessible Dispatch programme— previously only providing pick-ups in Manhattan—to all five boroughs to connect people with disabilities to yellow and green taxis as they need them, and also advocated for greater accessibility in the for-hire vehicle sector.”

The subway accessibility problem does not only exist in New York City. Other major urban centre like Paris and London also struggle to keep their subway stations accessible: 15 out of 303 stations in Paris are wheelchair-accessible, and 71 out of 270 in London are fully accessible, according to an article at The Guardian.

However, Los Angeles (LA) and the District of Columbia (DC) have done a surprisingly good job at making their public transportation system accessible for people with disabilities: all of their subway stations are fully accessible (91 in DC and 93 in LA).

Thus, their current improvements are going a step further. The spokesperson from Los Angeles mayor Eric Garcetti’s office told IPS: “We all have a role to play in breaking down barriers between communities with disabilities and the larger public.”

He shared with IPS what the city government has worked on during the last months: “The mayor issued Executive Directive 10—Vision Zero— to reduce traffic fatalities and make our streets safer for everyone, particularly for children, the elderly, and people with physical disabilities. We also issued Executive Directive 17, Purposeful Ageing LA, which is an innovative, multi-year effort to enhance the lives of older adults with improvements such as additional bus benches and transit shelters for elderly and disabilities individuals to use while traveling throughout the city.”

“These directives have helped Los Angeles become one of the most welcoming and accessible cities in the world,” he added.

In terms of housing accessibility, New York still struggles, due to its layout and antiquity, whereas DC takes the lead.

“An additional pitfall of the historic nature of NYC is its buildings. People with disabilities have difficulty navigating inaccessible building infrastructure; getting into restaurants, office buildings and finding housing units that are accessible for them,” argued Calise.

Asked what the strategy is to make housing accessible, he replied: “To combat this we are focused on ensuring accessibility in everything new that is being built by reinforcing and adding to the NYC building code. In addition, there are a multitude of renovation programs that modify a person’s home to make it more accessible.”

In DC, the mayor has also improved housing accessibility.“Mayor [Muriel] Bowser has devoted over USD100 million to the District’s Housing Production Trust Fund designed to develop accessible and affordable housing units both in new and existing apartment buildings,” Matthew McCollough, director at DC’s Office of Disability Rights, told IPS.

“This has led to the delivery of 3,606 affordable units, and there are 5,000 more affordable units in the pipeline,” he concluded.

The spokesperson from LA’s mayor’s office claimed: “As a city, it’s our job to ensure that all city facilities, programs, services, and activities are accessible to individuals with disabilities. But creating a more welcoming and accessible city goes beyond our infrastructure – we want every resident to feel safe and cared for by their community.”

Accessibility beyond city government

Although local governments are responsible for public infrastructure and, thus, for making it accessible to all citizens, civil society and the private sector also have a role to play that goes from lobbying to actually implementing solutions.

From NYC, Calise argued: “The role of the private sector is to realise the enormous benefits of accessibility in your business.”

“If your facility is accessible you are not only expanding your business to someone who uses a wheelchair but friends and family of people who use wheelchairs, parents with strollers and others. Accessibility is not only the right thing to do but it’s the smart thing to do in order to benefit your business.”

As for civil society, Calise stated: “The role of civil society is to be conscious of people with disabilities and the enormous benefits of inclusive design.”

Thus, they should move from consciousness to action: “With this knowledge, civil society should be conscious of how they can make their own homes, workspaces, websites etc. accessible and usable for all. In addition, when utilising these services of accessibility be mindful of those who really need them.”

The spokesperson from the LA office agreed and argued in favour of a comprehensive strategy: “It’s our job to help spread awareness around the needs of our disabled communities so that both the public and private sectors can proactively incorporate their needs into everyday decisions around services and infrastructure. As people with disabilities face disproportionally high unemployment rates, it’s also imperative that local civil society and the private sector work to create a more inclusive workplace by proactively recruiting individuals with disabilities.”

He concluded: “This holistic approach to actively identifying and incorporating the unique needs of individuals with disabilities helps ensure that everyone in our city is able to live vibrant, active lives.”

Excerpt:

There is still need for better educational opportunities, housing, medical care, and everything that is extended to other citizens in the Caribbean. Credit: Bigstock

By Jewel Fraser
PORT OF SPAIN, Trinidad, Mar 23 2017 (IPS)

Visually impaired Kerryn Gunness is excited about the possibilities offered by a new free app that would serve as his eyes and enable people like him to enjoy greater independence.

The Personal Universal Communicator (PUC) app is part of a new generation of cheaper assistive technologies making their way onto the market which allow people with disabilities to use technology that was formerly too expensive, but provided them with greater independence."We want to ensure that our citizens are able to make effective use of technology to transform their lives. People with disabilities are part of that." --CTU Secretary General Bernadette Lewis.

Gunness had the opportunity to do a test run of the app with its accompanying Internet-based Video Assistance Service (VAS) as part of a pilot project being launched by the Caribbean Telecommunications Union (CTU), under the umbrella of its ICT for People with Disabilities initiative. Regional statistics suggest that about five per cent of the populations in the Caribbean have a disability.

With this app, Gunness said, “I am able to be independent, manage my affairs, feel comfortable just like my sighted peers.”

Consultant to the CTU, Trevor Prevatt, explained to IPS, “The service is a VAS. It is built on the capability of your smart phone. You have medication to take, you can call [the service’s] agent who will tell you ‘Okay, hold up the bottle’. You put your phone on it and the agent will be the eyes for the person.”

“If a hearing person wants to communicate with a deaf person, she calls the agent who will sign or text or transcribe what you are saying to the deaf person.”

Assistive technologies definitely make a difference in the lives of people with disabilities, who would otherwise enjoy almost no independence, says Roseanna Tudor, Operations Manager at the Barbados Council for the Disabled (BCD). She described the cost of those technologies as “prohibitive”.

However, as communications technology continues to evolve, the CTU is seeking to harness the opportunities presented by this new generation of technology to increase the independence of people with disabilities.

“The technical revolution has precipitated convergence of formally distinct disciplines…if we are going to exploit the full potential of technology, we have to deal with all sectors of our national community….We want to ensure that our citizens are able to make effective use of technology to transform their lives. People with disabilities are part of that,” said CTU Secretary General, Bernadette Lewis.

For this reason, the CTU launched its series of ICT for People with Disabilities workshops, beginning in Jamaica in 2013, “to raise awareness of the ICT tools that are readily available for people with disabilities.”

Prevatt said, “The basis of the Caribbean Video Assistance Service (CVAS) is really a video relay service that has existed abroad for quite some time but it has been an expensive proposition; you needed proprietary equipment. The technology has changed so radically that you just download an app now and you access the service.”

Lewis explained that a pilot project will be conducted by the CTU “to collect as much data as we can. Based on the information from the pilot we will determine the best way to roll out the CVAS.” She explained that there is a lot of data available on the service which is based on proprietary equipment, but very little for the free service based on the app.

Among the information the pilot project would seek to capture is whether an agent from one country would be able to interpret correctly what a deaf person from another country is saying so as to relay it correctly, given differences in local vernacular in each island. Because of resource limitations, the service would start with an agent in Trinidad and Tobago, the home base of the CTU.

The cost of the service to the visually or hearing impaired would be the cost of using the Internet, Prevatt said.

However, the CTU is in negotiations with network operators to route the calls from other islands to the VAS centre in such a way that they do not incur international charges, Lewis said. “The network operators are very enthusiastic about the service,” she added.

She described regional governments as being “gung-ho” about the service and expressing an interest in having it implemented in their countries.

The CTU’s members are regional governments. “And governments have obligations to all of their citizens, so we are helping our members to fulfil their obligations to their citizens,” Lewis said.

Barbados, like Trinidad and Tobago, has signed the convention on the rights of the disabled. However, equality in all areas of life remains a work in progress for the disabled community in both countries.

Article 19 of the Convention on the Rights of Persons with Disabilities, states that: “States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and
their full inclusion and participation in the community…”

Forty-eight-year-old Rose-Ann Foster-Vaughan, Administrative Project Officer with the BCD, said while Barbados is making strides towards those objectives, there was still need for “better educational opportunities, housing, medical care; everything that is extended to other citizens.”

Foster-Vaughan, who lives with cerebral palsy, drew attention to the BCD’s efforts to have legislation passed that would ensure designated parking areas for the disabled. “We had a petition of over 12,000 signatures to take to the Parliament to legislate it. We have not heard anything in over a year.”

Tudor explained that the parking legislation has been awaiting approval by the Barbados Parliament for more than 10 years.

Employment continues to present particular challenges for people with disabilities. The 2012 Social Panorama report, by Economic Commission of Latin America and the Caribbean, states that while “The census data available for 18 Latin American and Caribbean countries show that type of disability has a considerable impact on the economic activity undertaken by persons with disabilities.”

Nevertheless, “In all cases, the percentage of persons aged 15 and over with one or more forms of disability who are economically active is much lower than the percentage for persons without any disabilities.”

Gunness thinks the CVAS would greatly enhance the job prospects of people with disabilities. “The service would put you on a par with your sighted counterparts. It would add and enhance what we are hoping for,” he said.

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

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 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:

In Egypt, there are few resources for children with disabilities. Credit: Cam McGrath/IPS.

By Cam McGrath
CAIRO, Aug 19 2013 (IPS)

Dina Gamal, whose 10-year-old son was born blind, says it is not him but Egyptian society that lives in the dark.

“They are the ones with the disability,” she says. “They have eyes, but cannot see past his blindness. He is able to do far more than most people think.”

Her son Mahmoud likes music, excels in languages, and with the aid of special software, can surf the Internet. He hopes to be a journalist one day.“A lot of parents feel shame. So they just hide their special needs children and never let them go out of the house.” -- Hanaa Helmy, founder and coordinator of NGO, MOVE Middle East

Sociologists say children with special needs or disabilities in Egypt face formidable barriers that prevent them from participating in society and exercising personal agency. The barriers are a result of ossified institutional structures and deeply-entrenched stereotypes that marginalise those who are physically or mentally different from perceived norms.

“Egyptian society is not ready to accept or integrate children with disabilities,” says Hanaa Helmy, founder and coordinator of MOVE Middle East, an NGO that works to improve the mobility of children with severe disabilities. “Children with disabilities are almost invisible to society, and those who do see them often don’t know how to deal with them. People feel bad, so they look away.”

Based on a 2006 census, government agencies recognise nearly a million Egyptians – about one in 80 – as having some form of disability. Civil society organisations argue that the actual figure may be closer to eight million, of which nearly half are minors.

“It’s hard to know the real number because many families are usually reluctant to discuss their children’s disabilities,” Helmy tells IPS. “They don’t tell their neighbours, and they certainly don’t tell strangers who show up at their door with surveys.”

The stigma of having a physically or mentally disabled child puts societal pressure on Egyptian families. Parents often worry about the impact the child’s disability will have on their siblings, fearing for example that prospective grooms will turn away when they learn that a girl has a brother who is handicapped.

Making matters worse, traditional Egyptian lore ascribes a child’s physical or mental disabilities to the curse of “jinn” (malevolent spirits). Many Egyptians believe that “jinn” inflict the disabilities on children to punish their parents for moral transgressions.

“A lot of parents feel shame,” says Helmy. “So they just hide their special needs children and never let them go out of the house.”

Disabilities also carry a heavy financial burden in a country where a quarter of the population lives below the United Nations-recognised poverty line of two dollars a day. Few families can afford the medical and physical therapies that could enrich the lives of children with disabilities. Fewer still can afford a basic education.

“Most of these children cannot go to regular schools,” says Helmy. “The schools here won’t accept children with physical or mental disabilities, and are not equipped to handle them.”

She says that most public schools, and all private institutions, require the parents and child sit for an admissions interview. Even a minor disability such as hearing disorder or a crippled leg is likely to disqualify the child.

One alternative is to send the child to the handful of “tarbiya fikriya” (conceptual schools), special schools set up to handle children with learning disabilities. But even these state-run institutions have a lot of conditions that exclude many disabled children, or make their admission prohibitively expensive, says Helmy.

“They often insist that the family provides a ‘shadow teacher’ for the child, but only rich families can afford this,” she says.

Sometimes just getting to school can be a challenge, says 22-year-old Eman Ibrahim, whose younger brother has Down Syndrome. She speaks of some of the difficulties in taking her brother to classes at a “tarbiya fikriya” in the southern Egyptian city Aswan, 15 kilometres from her village.

“My brother cannot get around on his own,” she explains. “There is no school bus, so I must accompany him on a microbus every morning and wait under the trees outside the school with the other mothers and sisters until his classes finish and I can take him home.”

Ibrahim says that besides the added cost of school transportation, the responsibility prevents her from working, further reducing the family’s income.

Abeer Eslam, a former programme manager at Wayana International Foundation for Integration and Awareness, a local NGO working to integrate people with disabilities into the community, says transportation is one of the biggest obstacles for Egyptians with disabilities.

“Our city planners have completely overlooked the disabled,” she says. “Moving in the streets is extremely difficult for them. Imagine not being able to hear cars honking and having to walk in the middle of the street because there are no sidewalks, or having to be carried up stairs because there is no wheelchair access.”

“Public transport and uneven sidewalks are hard enough for normal people to manage, let alone those with mobility disabilities or in a wheelchair,” she adds.

MOVE’s Helmy says the transportation gap typifies Egyptian society’s attitude towards people with disabilities, either ignoring their existence, or identifying them exclusively in terms of their disability.

“We need to change the culture, to make Egyptians aware that people with disabilities exist,” she says. “It’s not just about teaching people how to accept disabilities, it’s about making integration not the exception but the norm.”