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Inclusive society

“Stigma matters a lot”

by Maria V. Reina
Few development programmes in any country, although designed to benefit poor and disadvantaged people, reach the more than 10 % of the population with physical, psycho-social, intellectual or sensory disabilities. The Global Partnership for Disability and Development (GPDD) is an international initiative that wants to improve matters. [ Interview with Maria V. Reina, Global Partnership for Disability and Development ]

Many governments in developing country argue that the number of disabled persons is so small, that dealing with their particular challenges can wait until society as a whole becomes more prosperous.
Before discussing statistics, we must clarify what “prosperity” means. Is it merely about wealth or also about social justice? I would advise all governments to adopt the wider concept of prosperity. You cannot go towards a prosperous society while postponing the inclusion of a group of your people. Moreover, let us be clear about another thing: people with disabilities can and should contribute to a country’s prosperity. We, the disabled citizens, are not simply beneficiaries of wealth created by others. The idea is wrong that, once society is rich enough, some wealth will trickle down. In reality, sustainable prosperity begins with partnership and looks to include everybody. That said, let me answer your question. People with disabilities are not a small group, put rather a significant part of any nation. Data compiled at the World Bank suggest that 10 to 12 % of the people in developing countries have disabilities. The UN normally operates with a similar estimate of 10 %.

How do you assess the untapped economic potential of disabled persons in developing countries?
Well, the unemployment rates of people with disabilities are very high, though they need not be. In Latin America, the ratio is around 75 %, in Southern Africa around 90 %. While some some people with disabilities need special accommodation at their work place, not all of us do. Some of the accommodations, moreover, would also serve people without disabilities – just consider flexible work schedules, for example. Those companies that have made work environments more flexible tend to experience good results in terms of productivity. I do not know of studies assessing the employability of people with disabilities in developing countries, but there are some promising interventions related to skill development and job placement, and they show that quite a bit can be done. You will find more documented progress in the area of self-employment for people with disabilities, given that the stigma that prevents them from being hired is often quite high.

To what extent is stigma the reason for exclusion?
Stigma matters a lot, its impact cannot be overestimated. Indeed, disability includes both the functional limitation of the person and the physical and social obstacles that the environment presents, including mental barriers. Misconceptions about people with disability – for instance that being disabled is equal to being absolutely dependent on help – prevent us from participating in society by getting a job, going to university et cetera.

What impact do disabilities have on developing countries’ economies?
It is interesting to notice that besides direct costs of disability – such as rehabilitation costs – there are indirect costs and lost opportunities. Disability is normally income-limiting, not only for the people with disabilities themselves, but also for their families and care-givers. People with disabilities are less likely to work than other people, and when they do work, they earn substantially less. Just consider survey data from Tanzania: the figures show that the mean consumption of households with a member who has a disability is less than 60 % of the average.

Where there are no state-run safety nets, disabled persons depend on the solidarity of their relatives and charitable organisations. How do poor families cope?
Typically, people with disabilities are excluded from education, employment, health care and other services. Often, they are not allowed to become full members of their communities. Family members also face barriers to employment, adequate income, community services and community acceptance. A recent study of Inclusion International showed that the consequence of the lack of support and services for families with children with disabilities is often ill health and lost opportunity to earn income, as well as higher debt.

Why are women particularly burdened by disabilities of their own as well as of family members?
Women with disabilities suffer multiple or aggravated forms of discrimination that women and girls in general suffer. The issues range from exposure to violence, abuse and exploitation to lack of access to education and health care and so on. Moreover, women with disabilities have remained invisible in legislative and policy efforts at national and international levels. On top of all this, women with disabilities often do not receive adequate specialised health services, particularly maternal and gynecological care.

Please elaborate.
Health care providers may also assume that women with disabilities do not participate in sexual activities, so they neglect to screen them for sexually transmitted diseases or even perform a full pelvic exam. Forced sterilisation and abortion are also discriminatory practices applied to women with disabilities in some parts of the world. All too often, we are perceived as unable to perform the roles of wife, mother, and home-maker because of our disability. In particular, prejudices against women with disabilities include the belief that we are unable to become biological mothers and raise children, which leads to limited access to pregnancy and maternity services. Additionally, we may lose custody of our children in divorce, or have our children removed from our care by social welfare agencies, solely because we have a disability. Moreover, women who take care of people with disabilities are more likely to face poverty, with less access to education and employment.

What should be the role of state institutions in assisting disabled persons?
First of all, they should abolish regulations, customs and practices that discriminate against people with disabilities. Second, they need to mainstream disability in all policies and programmes and refrain from all practices that can lead to exclusion. Finally, governments and their agencies have to closely consult with and actively involve people with disabilities.

What role does the UN Convention on the Rights of Persons with Disabilities (CRPD) play?
I consider the CRPD a tool for development. Article 32 contains measures to be undertaken by governments to undertake and support inclusive development. Article 32 also states that all development programmes should be inclusive and accessible to persons with disabilities. Once a country ratifies the Convention, the CRPD should be reflected in all of its policies.

How can – and should – donor organisations assist developing countries in terms of dealing with disabilities?
Development partners can do many things. For instance they can
– set examples, for instance by hiring disabled people and by making their offices easily accessible,
– dedicate resources to the cause of people with disabilities,
– interact among one another, creating and sharing knowledge and good practices,
– train their staff accordingly, and
– put pressure on aid recipients not to exclude people with disabilities and their organisations.