UNITED NATIONS — As countries work through the early stages of implementing the Sustainable Development Goals, a development agenda designed to represent everyone, some disability experts are questioning how effectively national plans can incorporate people with disabilities.
One major challenge could impede this process: there is no accepted definition of what it means to be a person with a disability, and no single, international system for collecting demographic information on people with disabilities.
“Data is available, but there is a problem now. There is no unity within the United Nations about recommending a concrete tool to disaggregate this data and this has been a super important problem facing us now,” explained Vladimir Cuk, executive director of the International Disability Alliance. “If we cannot give clear recommendations, member states have an excuse not to disaggregate data. So for us it is a red flag, and we are gravely worried we are witnessing these disagreements within the U.N. system.”
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The potential setback has come to light as disability experts, including Cuk, are beginning to track how individual national plans are implementing the SDGs, which reference disability 11 times. This includes Goal 4, calling for inclusive and equitable quality education for all, and Goal 8, which aims to promote sustained and sustainable economic growth for all, both explicitly including “persons with disabilities.”
These references are included in the SDGs as the result of disability advocacy work in the lead up to the development framework’s adoption in 2015. The goals’ predecessor, the Millennium Development Goals, made no explicit mention of people with disabilities.
“The SDGs were a real landmark and a real turning point for changing lives. Because of the convention, we can demand our rights and governments know they have their obligations,” explained Yetnebersh Nigussie, an Ethiopian human rights activist and senior inclusion advisor for the international disability NGO Light for the World.
The 2008 international human rights treaty protecting people with disabilities defines these persons as those “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” The U.N. Convention on the Rights of Persons with Disabilities also mandates that ratifying states collect appropriate statistical and research data to develop and implement policies that will give people with disabilities equal rights.
Still, as Nigussie explains, there is no “exhaustive definition” of disability, which she describes as an “evolving concept.”
The lack of agreement over what it means be disabled has resulted in both a lack of harmonization of U.N. statistics disaggregation, and a broader unknown about how many people are disabled, what rights and services they have, and what they are not receiving.
Most U.N. agencies recommend that countries implement the basic six core census questions established by the Washington Group on Disability Statistics, a U.N. group set up by the U.N. Statistical Commission. These questions — designed to identify people, including children, with disabilities — measure whether a person has difficulty performing basic universal activities, such as walking, seeing, hearing, and communicating or being understood.
The WHO and World Bank, however, have piloted a separate Model Disability Survey, which the organizations say came out of recognition of the need for better disability data. The survey looks at environmental factors, functioning, and capacity and health conditions, with other questions similar to those of the Washington Group. The differing approaches could lead to some people with disabilities not being registered by their governments, and therefore not receiving certain support and benefits, some studies have found.
In July — the same month 43 countries provided reviews of how they are implementing the SDGs at the high-level political forum on development at the U.N. Headquarters — the U.N. also finalized its preliminary set of SDG indicators. This is a tool that has been in the works for more than a year — and has also been criticized for its terminology gaps and other shortcomings.
Leonard Cheshire Disability, the U.K. charity for disabled people, presented some of their findings on how certain countries are meeting their commitments to people with disabilities, offering a mixed report from the four countries they reviewed this year: Sierra Leone, Zambia, Kenya and Bangladesh.
“The findings were not so surprising to us, but it still was a bit disappointing,” said Ola Abu Al Ghaib, the charity’s global head of influencing, impact and learning. “We cannot see the transformative change that was promised to people who are most marginalized. In the national plans, there are indications of things here and there, but disability is not a cross-cutting issue.”
Al Ghaib — who has had a wheelchair since she was a teenager, following a botched spinal surgery — said her own experiences across many countries suggest the situation has not improved dramatically over the years.
“Unfortunately, nearly 10 years since we signed the convention [on the rights of persons with disabilities], we have seen some changes on the ground, but it is not as robust as it needs to be. We have to understand the realities of understanding how to define disability, we need to know who is disabled, and globally until now there is not a consensus about that,” she said during an interview with Devex in New York. “The gap is still huge.”
Nigussie — who is a leader of the Stakeholder Group of Persons with Disabilities, a focal point for U.N. agencies — said a review of disability and sustainable development in 15 countries produced mixed results. Progress to create more accessible spaces, for example, is largely dependent on the early and ongoing involvement of local civil society and disability rights groups, she said. She also called for better accounting of people with disabilities.
“If we are not measured we cannot be treasured. Governments need to realize disaggregated data is important, and is a critical step to making sure their programing is accountable and inclusive,” she said.
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