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Stigma and varying definitions obscure the true scale of disability and its challenges in lower-income countries, writes Inga Vesper.

An estimated 1 billion people – 15 per cent of the world’s population – live with a disability, according to the World Health Organization (WHO), and 80 per cent of these are in developing countries. Yet people with disabilities have remained conspicuously absent from policies aimed at development and wellbeing, especially in the global South.

The Millennium Development Goals, which ran from 2000 to 2015, contained no specific goal for disabled people. The Sustainable Development Goals, to be met by 2030, still have no official disability goal, but 11 of their sub-goals explicitly mention disabilities, especially those on health, urban planning and monitoring.

In 2006, the United Nations adopted the Convention on the Rights of Persons with Disabilities, but it took until November 2016 for the first official Disability Toolkit to be launched, this one aimed at Africa.

Efforts to understand the extent of disability and interventions required are marred by difficulties in data collection. In 2006, at the time the UN’s disability convention was adopted, the WHO thought that only 500 million people in the world were affected by disabling health problems — half as many as were identified six years later in the 2011 WHO World Report on Disability.

Defining disability

The problem is exacerbated by the fact that countries measure disability in different ways. While some nations take only physical ailments into account, others will include mental health in their data.

Definitions of disability vary. Blindness and visual impairment, for example, affects around 253 million people, according to the World Blind Union. But this ranges from people with partial sight who can perform a variety of jobs to total blindness. With good support, blind people can live independent and fulfilling lives, but without adequate training in independent living they may experience lifelong dependency.

While well-known and visible disabilities, such as missing limbs or blindness, receive much attention, chronic diseases such as heart disease, diabetes and mental illness account for more than 66 per cent of all years lived with disability in developing countries, according to the WHO. Years lived with disability is a measure that takes into account that some disabilities start at different life stages and some, such as mental illness, may not be permanent.

Around one in four people will have a mental health condition at some point in their lives, and around 450 million people suffer from one at present, but again, these are less likely to be diagnosed in developing countries, where awareness around common illnesses such as depression remains low.

To try to create more clarity, the WHO has begun to collect more detailed data. According to its latest estimates, around 3 per cent of the world’s population — between 110 and 190 million adults — experience “severe disability”, meaning they cannot manage daily life without assistance.

Stigma and poverty

However, data collection on disability is also stymied by stigma. Mental health problems are especially likely to go unreported as sufferers and their families attempt to hide what they see as a shameful affliction. This is particularly true in areas where beliefs in witchcraft are common. Physical disabilities are harder to hide, but still considered disgraceful in many countries across the world.

This leads to a consistent underreporting of disabilities. In India, for example, just 2.2 per cent of the population said they had a disability in the country’s 2011 census. Reported rates vary widely between states but the World Health Survey estimates a disability prevalence among adults in India of nearly 25 per cent.

These data gaps are likely to fuel the mismanagement of disabilities, which has a direct impact on development. According to the UN’s 2018 Flagship Report on Disability and Development (p.100), more than a quarter of adolescents with disabilities do not attend secondary school, decreasing their employment opportunities, which often results in lifelong poverty. This is exacerbated by higher healthcare and living costs, especially in countries that struggle to provide social assistance and welfare. The WHO report estimates that being disabled in a developing country increases a person’s living costs by around nine to 14 per cent.

Gender matters

There is a gender aspect to this, too. A study published in the 2016 African Disability Rights yearbook found that across the African continent female infants with obvious signs of disability were more likely to be killed at birth. A report by the UK government on disability stigma identified social conceptions among East Africans that women and girls with disabilities lacked sexual agency of their own and would not report sexual abuse, leaving them vulnerable.

Data from India showed that an estimated 25 per cent of women with disabilities had been raped, while almost all had experienced physical violence. Meanwhile, the 2018 UN Flagship Report on Disability found that women with disabilities were less likely to receive ante- and post-natal care, putting their children at greater risk of disability, too.

Policy and action

Although the picture looks bleak, there are signs of change. In Africa, several countries, including Mozambique and Ethiopia have created national action plans to address the needs of people with disabilities. In addition, South Africa and Zambia have started official efforts to combat mental health problems, while many other African countries have incorporated better assistance for people with disabilities in their economic and social development plans.

The 2016 Toolkit on Disability for Africa sets out concrete strategies to battle stigma and discrimination. These include action within communities, but also law and policy reform. Furthermore, the toolkit calls for better data collection, more cooperation between neighbouring countries experiencing the same problems, and for wider South-South exchange of information.

According to the WHO, the rates of disability worldwide are increasing, partly as a result of ageing populations and increases in chronic health conditions. But at present, as data gaps persist, the true burden of disability in developing countries remains unclear.