The Consequences of Exclusion

Below is the speech delivered by Shantha Rau Barriga, Director of Disability Rights at Human Rights Watch, in The Hague, The Netherlands on September 10th, 2015. She spoke strongly about the need to address the rights of people with disabilities within the international development sector: 

The Netherlands can be proud of the impact it has had in international development assistance. A lot has been achieved over the last 15 years – but people with disabilities in many countries have not shared equally in these gains.

People with disabilities have been left behind as development has moved forward. This becomes very clear when looking at the data we have available – and when considering concrete examples: Meet Amman, a young boy with cerebral palsy whom I met in a village in the far western region of Nepal. His mother brings him to the entrance to his school every day, and then watches as Amman crawls up, on all fours, the steps into his classroom.

He was 16, yet had just started school two years before, studying in Class 2 with classmates who were nine years younger. Because the school did not have an accessible toilet, Amman couldn’t go to the bathroom all day. Amman’s school was one of the newer schools in his community, one of many across Nepal built with the support of international development assistance. Despite the daily barriers, Amman is one of the more fortunate children with disabilities in Nepal. He actually attends school. Indeed, when I met with government officials in Nepal, they were proud to tell me that 94 percent of children in Nepal were in school. Then I asked them: who are those 6 percent denied an education? Mostly children with disabilities. Nepal and many other countries have made important progress toward achieving universal primary education – the second Millennium Development Goal. However, universal education will remain an unattainable goal if children with disabilities continue to be left out.

The exclusion of people with disabilities is of course not limited to education – it is persistent in so many areas of life. For example, people with disabilities are often denied sexual and reproductive health services. Physical barriers are one cause, but there are other others: discriminatory attitudes, a general lack of awareness and lack of targeted services. In fact, there is widespread belief that people with disabilities do not have sexual relationships or the desire to have children. We’ve documented cases of people with disabilities denied HIV testing and treatment in Zambia and women with disabilities who did not have access to pre-natal care in northern Uganda. Sexual and reproductive health is generally an area that international donors pay great attention to – and the challenge is to ensure that these services are provided in an inclusive manner.

But an even greater challenge are areas such as mental health, where services are often non-existent in the first place. Meet Doris, a 57-year old woman with bipolar condition in Ghana. She languished in a spiritual healing center for 5 years, tethered by a rope to a wall for months, denied food and water for days at a time, and left to sleep, bathe, and defecate in the open. In Indonesia, the practice of shackling people with mental health conditions has been widespread. Over 57,000 people have been locked up in chains, with little to no access to mental health services. We met one woman who lives a few hours away from Jakarta, who has been locked up in a dark room for 15 years, her hands tied behind her back like this. We met two sisters who lived in a goat shed for 4 years, allowed out only 1-2 hours per week.

The situation in Ghana and Indonesia underscore the need for greater investment in mental health as a key component of development assistance in the area of health. It is also essential to monitor how aid is spent, to ensure that it does not in any way contribute to human rights abuses. —- So, why should the Netherlands prioritize inclusion of people with disabilities in its policies for international cooperation?

1. It’s a matter of equal rights

The urgency of including persons with disabilities is not just a moral imperative. It is the new international legal standard, as reflected in the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is a comprehensive human rights treaty, which spells out the rights of persons with disabilities in many areas of life. Respect for inherent dignity, independence, individual autonomy, non-discrimination and participation are among the treaty’s core principles. The CRPD’s standards do not just apply within the borders of States Parties. Indeed, the treaty foresees that States Parties will ensure that “international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities”.

2. It’s a matter of scale

There are an estimated 1 billion people with disabilities around the world, 80% of whom live in developing countries. They make up 20% of the poorest, most marginalized people in those countries. Compounded by conflicts and the growing aging population, the number of people with disabilities worldwide will likely only rise further. And in terms of numbers, it is not just persons with disabilities who are affected – the entire family can be affected by the additional costs, stigma and discrimination resulting from disabilities throughout the world. Despite these high figures, people with disabilities are often invisible when it comes to aid. In the crisis in Central African Republic, for example, of the eight UN and nongovernmental aid agencies Human Rights Watch interviewed, none were systematically collecting data on people with disabilities, and their needs were not fully included in the agencies’ programming.  The reality is: If you are not counted, you don’t count. Of course, there are competing priorities and limited resources, especially in a crisis situation, but people with disabilities represent 1 in 7 people, and they have the same rights as any other person.

3. It’s a matter of responsibility

Donors should make sure that no new money is used to build new barriers. The only way to prevent this is by including persons with disabilities in all programs, at all levels. Particularly at the planning stage. For example, when designing a new building or service, governments should be considering how to make it inclusive right from the start – which is much more time and cost effective than thinking about accessibility at the end, as an after thought. Donors have important influence in the countries they partner with – by making inclusion a requirement for funding, donor countries can encourage governments to meet their commitments under the CRPD – and ensure that persons with disabilities have equal access to the benefits of development cooperation.

4. It makes economic sense

The inclusion of people with disabilities in development is not only important from a human rights perspective. There are also economic reasons to do so. Exclusion of people with disabilities from education, jobs and health care generate economic costs to individuals, their families and societies at large.  For example, in Bangladesh, one study indicated that the exclusion of people with disabilities from the labor market resulted in a total loss of US$891 million/year; income losses among adult caregivers added an additional loss of US$234 million/year.⁴

Still, there remains a widespread perception that inclusive interventions are simply too expensive, especially in low and middle income countries. But there is growing evidence that this is not the case, certainly not across the board. Including persons with disabilities is for the most part a matter of smart planning that looks beyond the short term. And it is, that point is worth repeating, by now a legal requirement under international law. The rights and interests of people with disabilities therefore need to be considered as a cross-cutting issue in all programs and at all levels – similar to how gender is viewed.

This month marks the launch of the SDGs – we are entering into a new era. Throughout the negotiations there has been a strong emphasis on ‘leaving no one behind’. Now is the perfect opportunity for the Netherlands to embrace inclusion, and commit wholeheartedly to ensuring that no one is excluded from your development efforts. Otherwise the cycle of exclusion will be perpetuated, and another generation of people with disabilities will be left out of school, health care and other development goals. The Netherlands is already a champion of gender mainstreaming. Next, I hope you will take on the challenge of disability mainstreaming! At stake are the lives and livelihoods of millions of people with disabilities and their families around the world, who, like Amman, that young boy in Nepal, face steep barriers in trying to leave poverty behind. Thank you.

Shantha Rau Barriga is director of the disability rights division at Human Rights Watch. She leads research and advocacy on human rights abuses against persons with disabilities worldwide, including in China, Croatia, Ghana, India, Indonesia, Nepal, Peru, Russia, Uganda, the United States and Zambia. She has worked on a range of issues including: the shackling of people with psychosocial disabilities, denial of education for children with disabilities, violence against women and girls with disabilities, institutionalization of children and adults with disabilities, and the neglect of people with disabilities in humanitarian emergencies.