We are happy to announce that African Politics and Policy will publish a series of interviews devoted to the health situation in Africa. And we are pleased to inaugurate this initiative by interviewing YETNEBERSH NIGUSSIE, one of the world’s most influential disability rights activists from the Global South. Since 2015, Yetnebersh has represented the international disability rights movement at the UN. In January 2016 Yetnebersh joined the international disability and development organization Light for the World (the interview with this organization will be published soon) where she strives for inclusive education and empowers and inspires by her own example people with disabilities.
APP: Could you please tell us what are the challenges that people with disabilities face in Africa?
Yetnebersh: I believe the problems faced by persons with disabilities are somehow similar around the globe. The difference is the magnitude and the level of attention it receives. In the developing world like Africa, there are quite so many competing priorities and persons with disabilities may not get the proper coverage in policies, programs and strategies. For instance, even people with disabilities are discriminated in the developed world. But they are provided with better support services to facilitate their independent living.
In many African countries, persons with disabilities are still prevented from rights such as being permitted to marry, opening a bank account, voting, working, having legal capacity, getting education, etc. Women with disabilities face significantly more difficulties – in both public and private spheres – in attaining access to adequate housing, health, education, vocational training and employment, and are more likely to be institutionalized. They are at higher risk of gender-based violence, sexual abuse, neglect, maltreatment and exploitation. We have learned through our Community based Rehabilitation interventions in Ethiopia, Burkina Faso and Mozambique that there is lack of support mechanisms that leads to family poverty. Many single mothers struggle to make livelihood for the family, as fathers tend to leave the family in fear of stigma and discrimination, if a child acquires, or is born with a disability. Our work in South Sudan has also taught us that in conflict areas, persons with disabilities are left behind when people flee, they have difficulty accessing food and shelter and their numbers increase as a result injuries from e.g. bombs, mines, small arms, rape.
To sum up, persons with disabilities in Africa experience extreme levels of poverty; continued human rights violation, systemic discrimination, social exclusion and prejudice within political, social and economic spheres; in a greater extent than those in the developed world.
APP: Are there any cultural prejudices against people with disabilities in Africa that are difficult to overcome?
Yetnebersh: Yes, Africa is rich in culture; Simultaneously, this culture also consists of various harmful practices that threatens the life and dignity of persons with disabilities; For instance, there is the maiming or killing of persons with albinism in many parts of the continent. In Tanzania, these body parts can fetch from $600 right up to $75,000 for an entire body. This creates lucrative opportunities for some who are making their living from being witch doctors, people not only with lower income and power engaged as the amount of money indicates. Therefore, it is not easy to bring both policy level change and programmatic inclusion for persons with disabilities. The prevailing social, cultural and religious context presents barriers to the full participation and inclusion of persons with disabilities in Africa.
APP: The report “Disability and Data: from Marginalization to Empowerment” (https://www.light-for-the-world.org/disability-and-data-marginalisation-empowerment) is discussing the problem of wrong data on people with disabilities. Why, in your opinion, the quality of the data is poor, and what needs to be done to improve the data and its use?
Yetnebersh: Persons with disabilities do not make up a small, insignificant group. As much as one out of seven (15 per cent), or more than one billion women, men and children live with a disability according to the World Report on Disability, 2011. Most of them live in developing countries. It is estimated that 82 per cent of persons with disabilities live below the poverty line. One in five of the worlds’ poorest is a person with a disability.
Another World Bank statistics show that 30 per cent of school children are children with disabilities. Only 3 per cent of persons with disabilities are literate, 1 per cent when it comes to women. Researchers note that inadequate definitions of disability, confusion of terms, omission of certain types of disabilities, unwillingness of parents to disclose that they have a child or family member with a disability, as well as the exclusion of some regions in surveys due to security reasons, are among the major drawbacks that could account for the failure of the National Census and other surveys to capture accurate and reliable statistical information on persons with disabilities.
APP: What were the biggest obstacles that Ethiopia was confronted with as the country moved toward the UN Convention on the Rights of Persons with Disabilities?
Yetnebersh: Despite the absence of reliable data, poverty is the main characteristic of persons with disabilities and their families in the country, as the majority of the causes of disability is directly or indirectly related to poverty. Poverty is both a cause and consequence of disability. An estimated 95% of all persons with disabilities in the country are living in poverty. With 84% of the population living in rural areas of Ethiopia, it can be assumed that a majority of persons with disabilities also live in rural areas, where basic services are limited and often inaccessible. In addition, the available rehabilitation services in the country are concentrated in urban centers. As a result, the great majority of persons with disabilities do not have access to basic health, education and social services that could help reduce their dependency and facilitate their independent living, a sustainable livelihood and an escape from poverty.
APP: Could you please tell more about your school “Yetnebersh Academy”? Do you get any (non)governmental support to bring education to underprivileged children? Does the Academy offer an opportunity for volunteers to work?
Yetnebersh: The school is a lab that is established to demonstrate the impact of inclusive education both on children with and without disabilities. It started as a family private limited company nine years ago and has both kindergarten and primary classes up to grade eight. We educate more than 300 students and it is purely business with no external funding involved. The academy has created job opportunity for more than 35 employees and has its own management. Children with disabilities are welcome and we have more than ten children with different types of disabilities. We used to have international volunteers in the first five years of operation. Gradually, we had to give up due to the change in the immigration rules of the country and we rely on local volunteers. Annually, we get 2-3 volunteers helping our school to grow.
APP: As a founder of “Yetnebersh Academy”, how do you see promote the interaction between children with disabilities and children without disabilities?
Yetnebersh: I imagine that this could have been better answered by the parents. The assumption was before that parents having non-disabled children would refuse to send their kids to learn with those with disabilities. In this case, I, the owner of the school, have disability and it is only parents who are persuaded in my deliverables who trust to bring their kids. It doesn’t mean that there are no problems. But I don’t think they were significant. I believe and have witnessed in my business, a generation which has grown playing and learning together wouldn’t have any problem to work together, to marry to each other and to be of help to each other. How can we expect children with disabilities to opt for inclusion while they have grown in an isolated manner? How can we expect children without disabilities to include their peers with disabilities while their experience is that of segregation? This and other strong living reasons testify that schools the right place to promote inclusion of persons with disabilities.
APP: In 2005, you were a Co-founder of Ethiopian Center for Disability and Development (ECDD). When was the idea to build the center first introduced to the government, and how it was received?
Yetnebersh: I was then a university student studying my first degree of law in Addis Ababa University and beginning to penetrate the labour market. That was also my initial days of disability activism. I met with an American guy who was about to retire from the International Labour Organization (ILO) after a long successful years of service globally on disability and vocational rehabilitation. His name is Bob Ransom and we have known each other for a couple of years before because of my voluntary engagement in a project intended to promote entrepreneurship among women with disabilities, to which ILO was providing funding and other technical assistance. Bob has a special heart both for disability inclusion and making Ethiopia a place of success in disability inclusion. His trust in me as a young woman with disability and the fact that he chose Ethiopia, a very poor country to undertake this new idea made me think that I should opt for a better challenge though I was offered with other various job opportunities by the time. We came along with other four Ethiopian individuals to establish this organization to challenge the practice of disability specific service provision and call for inclusive approach to disability and development. The government has welcome our initiative and months after our registration, the UN Convention on the Rights of Persons with Disabilities which reaffirmed our call for inclusion was adopted and our call for inclusive development found a legal ground. ECDD now has more than 40 employees out of which nearly half have different types of disabilities and runs an annual budget of more than 20 million Ethiopian Birr in five regions and two city administrations.
APP: What is the greatest lesson you have learned so far as an activist?
Yetnebersh: My greatest lessons learned from my fifteen years of activism on tackling inequality are the need to work together and providing clear leadership. I have realized through the process that deconstructing what the society has established as a norm would require longer time, stronger allies and committed leadership. For instance, disability based discrimination has been deep-rooted in the society and we cannot tackle it overnight. Meanwhile, we need to have short term wins which will enable us to measure whether we are gradually approaching towards the change we want or not. It is impossible to achieve such changes alone, as it requires multidimensional contribution. So, one should identify pertinent and relevant allies in this long journey. Having the time and the allies in place are necessary steps; but they are not sufficient to lead us to the goal we want. We need committed leadership, which can mobilize the required resource and leverage to make the change happen. It is unrealistic to expect others to lead the change we want. See what Mandela and Gandhi did in terms of demonstrating their exemplary leadership in championing the change they want to bring. This lesson echoes the motto of persons with disabilities “nothing about us, without us!” Persons with disabilities themselves should lead this process of change for creating the inclusive future we want.
APP: How do you think, what is the best way to deliver your message to the world: “Focus on the person, not the disability? We have one disability, but 99 abilities to build on!”
Yetnebersh: The world should no longer perceive persons with disabilities as marginalized and disadvantaged. The recent past decade, the UNCRPD has changed the language and way of thinking that we are considered objects of charity and has brought a paradigm shift for disability to be viewed as a core human rights issue. An average estimate of PWDs has been provided by World Bank and WHO ascertaining persons with disabilities represent the single largest minority of the population in the world. The Sustainable Development Goals are crucial benchmarks that the world commits to make sure that no one is left behind with a view to bring those most left farthest behind forward in development. Fifteen years along the line, governments and CSOs have the opportunity to identify and meaningfully engage persons with disabilities and their organizations in ongoing development discourse and programs. In such an inclusive society, people with disabilities are accepted, have a voice and participate actively in the life and development of their communities.
APP: And finally, do you think that there is anything that we (African Politics and Policy) can do to help you, your academy and Africa’s disabled people?
Yetnebersh: I believe that everyone can do something to change the situation of persons with disabilities globally. As discussed earlier the situation becomes worse for persons with disabilities in Africa due to their extreme poverty. African politicians should work towards removing attitudinal, physical and institutional barriers to realize the enjoyment of fundamental rights and freedoms by Africans with disabilities. 46 out of 54 African countries have ratified the UN Convention on the Rights of Persons with Disabilities and five out of the eighteen committee’s members to monitor the implementation of this Convention come from Africa. I think this is a great opportunity. Yet, we need to have proper institutional and financial resources in place in each country to realize the inclusion of persons with disabilities in their community.
Above all, we need to invest in initiatives, which can result in systemic changes, which are sustainable, inclusive and able to accommodate the needs and aspirations of different citizens including those with disabilities. Investing in people is a way out from poverty for a continent having its largest resource being human capital. As a result, we need to make sure such investment take in to consideration the special needs and abilities of persons with different types of disabilities. Inclusive education is the process through which such diversities are appreciated and human capabilities are valued. We want Africans to support and join our journey of inclusive education so that we can meaningfully build a generation which can accommodate differences and value human capabilities. I believe everyone is a candidate for inclusion regardless of the type of disability, the geographical location, gender or any other status. What it takes is genuine political will and uninterrupted commitment from each of us!