Our next interview in the IDAP interview series features Yetnebersh Nigussie, an acclaimed disability rights activist and lawyer in Ethiopia. Her optimism and positive frame of mind is best epitomized by the fact that she has described the fact of losing her eyesight at the tender age of five as an event which freed her from the potential clutches of child marriage. Born in Ethiopia, in an era when women with disabilities would have little opportunities and resources, Yetnebersh’s indomitable spirit not only helped her pursue her education in a mainstream school but also to become a lawyer and social worker of great repute. After receiving her postgraduate education at the Addis Ababa University, Yetnebersh devoted herself to using the transformative power of her education to open doorways and create opportunities for millions of fellow Ethiopians with disabilities.
Her rich body of work has been laced with an unwavering desire to fight discrimination in all its forms, irrespective of its targeted victims. In recognition of her exemplary service, earlier this year, Yetnebersh received the Right Livelihood award – popularly described as the Alternative Nobel Prize – “for her inspiring work promoting the rights and inclusion of people with disabilities.”
This interview was conducted by Rahul Bajaj and Anusha Reddy. The interview has been lightly edited for clarity. The unedited audio transcript of the interview can be listened to here.
1. Could you please describe to us the nature of your disability?
I’m blind. I don’t have partial vision but I can see colours as long as the colours are bright. I have a vision but I don’t see (laughs)!
2. You completed primary school education from a blind school and secondary school education from an inclusive school. Could you kindly share with us your experience of studying in a blind school vis-à-vis your experience of studying in an inclusive school?
I wouldn’t call the second school an “inclusive school”. It was more of an integrated school. My first experience at a school for the blind was interesting because everything was designed with the blind in mind. Everything was comfortable and accessible. We lived in the same compound as the school. All the educational material and games were prepared for us. I would say it was an exciting and nourishing experience.
Whereas the integrated school I went to was mainly prepared for sighted students. That way, none of the learning inputs were prepared for me. I had to prepare my own learning inputs. I had to write all my notes and write in braille. There were no books in braille and I had to ask friends to read for me. There was no audio material as well. The integrated school was a bit of a challenging experience for me.
Put simply, the school was not ready to accommodate me, I was the one who was ready to accommodate the school!
3. Many a time, mainstream schools in India refuse to admit students with disabilities on the pretext that they do not have the expertise or financial resources to meet the needs of students with disabilities. Given that you studied in a mainstream inclusive school in a developing nation and opened an inclusive school, what do you believe is the solution to change this mindset?
I think that is where I would call for inclusive schools. If we in principle agree that an education is not just a privilege for few but is a right for everyone, I think every educational facility be it physical or academic should be prepared to serve everyone regardless of gender or disability. All of the barriers that I had faced in an integrated school were artificial barriers. None of them were natural barriers. I believe that society has the power to remove all those barriers. I think it is about the various beliefs – if education is considered a right for everyone, every facility while being designed and used will be designed to cater to everyone’s use. It is about a mindset I would say. If you budget printing books in ink, you should also budget printing books in braille as it can easily be done!
4. In developing countries like Ethiopia where there are significant resource constraint as there are in India and given that there are finite resources, how would you respond to the argument that they would be better spent in activities that serve the needs of larger sections of the populations than the disabled?
I would believe that if we think about rights, numbers should not be a factor. Rights of an individual imposes an obligation on the State. I believe that every accommodation such as inclusive education will not only benefit persons with disabilities but those without as well. This investment should not be considered as an investment for few but disability accommodation benefits all – even those without disabilities. Inclusion benefits everyone. For instance, ramps are built for children with physical disabilities, but children without disabilities use the ramp very comfortably as they do not want to fall down on the stairs. In classes, where the material is prepared for the deaf, hearing students benefit as well as they learn from audio-visual material.
In Ethiopia for example, we work with a partner where they work with a public school. Hearing students who are privileged to join classes with deaf students have better academic performances because the support provided to the deaf is also benefiting the hearing. For example, the adjustments we made for students with learning disabilities also benefit others who do not have a learning disability because it is about enhancing the quality of education.
5. That may be so, but the argument that often gets made is that, when the interests of LGBT people or the disabled are involved, policies that are beneficial for the public at large ought to be favoured over policies that benefit a small fraction of the population.
First, as I said, when we talk about rights, numbers don’t matter. It’s not about how many we are; it’s about the government having an obligation. Second, the argument that the disabled are few in number and hence do not warrant heavy investments is wrong because it has been proven that the investments made for the disabled benefit everyone.
6. You studied at the Addis Ababa University, where you completed a degree in law and Masters Degree in Social Work. Could you let us know why you chose to study law? Additionally, did your university provide you reading material in accessible formats? Given that there is a book famine plaguing students with print disabilities, especially in developing nations, what do you believe is the most resource efficient solution to solve this crisis?
My motive behind studying law was to understand the operating environment especially how to fight against discrimination against anybody including those with disabilities. The experiences I had in terms of being excluded and in terms of being discriminated in so many aspects including education really urged me to study what law is about and what rights are about. Once I studied law, which is the operating framework for the society, I decided to study social work because I really wanted to understand where law operates in society. After all, law exists for the benefit of the society, so I wanted to understand the value of law in society.
In terms of availability of books, the answer is definitely no. Even though there are codes written in Braille but since our country was undergoing a phase of legal reforms, we didn’t have legal material in Braille. My way of learning was mostly writing my own notes to accommodate my needs.
I think it is a struggle for persons with disabilities. I don’t think one size fits all. There are people who read Braille and those who cannot. I believe the most resource efficient way is to make sure to have alternative formats are available. I know some would prefer audio versions, others would prefer Braille. I feel it should be open to what exactly that specific society or specific individual would want to have.
- In an interview with The Guardian, you had said “Women with disabilities in Ethiopia face multiple layers of discrimination. My role is to link the two communities, of disabled and able-bodied women, that have faced historical discrimination.” In India as well, women – able bodied and disabled face multiple layers of discrimination. How do you think we should address this problem?
Gender and disabilities have many intersections. This would require a joint action by those with disabilities and women. Unfortunately the process of understanding of women as well as disabilities are not proven or they do not have a rationale ground to discriminate against both women and those with disabilities. The guiding principle must be that women as well as persons with disabilities can contribute. If we invest more in education of girls and if we invest more in inclusive quality education, I believe that we will be able to tackle the problems and challenges that both women and persons with disabilities face. In particular, for women with disabilities, it is not only about changing mindsets, but also providing facilities because many times families have a very protectionist approach about girls with disabilities and they decide whether they go to school or not and access health services or not. This process is to overcome these patterns of mind. The disability laws should be used to empower and provide opportunities for girls and women with disabilities. I believe that the most empowering tool for all, including women and girls with disabilities, is education.
8. One question that we have is on the issue of intersectionality – which is essentially the idea that there are people who are objects of discrimination on multiple grounds. Do you think that one should look at these factors in a holistic way when designing policies or should you look at them in silos? For instance, take a hypothetical of girls with disabilities. Now two distinctive attributes – their gender and disability – make them the objects of discrimination. This being so, should policy interventions be designed to address each of these individually or in a holistic fashion?
I believe that we need to have inclusion as early as possible. My firm answer to your question on how to address discrimination is that we really need to invest and dedicate ourselves in full as a generation who has zero tolerance for any source of discrimination on any ground. If we only say no discrimination on disability but if we allow discrimination on basis of gender or on the basis of ethnicity or sexual orientation, I think that is a lost case. We really need to invest our energy and money in a society which believes in equality and practises inclusion. Martin Luther King said, “Injustice anywhere is a threat to justice everywhere.” I believe that in principle, if we talk about all human rights for all people, we will be able to work towards fighting against discrimination.
9. Let me give you one concrete example in this regard. The principles of agency and autonomy – the idea that everyone should have the freedom to make their own decisions – are more easily recognized for women, for instance, than they are for the disabled. So if a woman’s husband tells her that she should not choose a given profession, it is clearly recognized is being violative of her power to choose. But if a disabled person’s family gets to decide what they can do or where they can go, it is thought that this is in the disabled person’s best interest. How can we deal with these double standards?
It was not easy for the gender movement to easily convince that gender should not be a point of discrimination. It is imbibed in the viewpoint of society. You don’t find these things on the cover of a book; they are very deeply rooted. Such things exist in the being of a society. It requires a very systematic and collaborative effort to address them. In my opinion, empowering a society that has zero tolerance for any form discrimination is the solution. I know it is a long term investment and people would want an answer for facing discrimination that entails their group being given priority in this fight. However, that would result in other groups being left behind. I would encourage partnership, human oriented thinking of development where it is not only about numbers rather it is about the ability to ensure that no one is left behind. I would encourage joint movement of human beings and recognition of human diversity as values in a given society. I think that can take us forward.
10. You won the prestigious Right Livelihood Award. The award is given to people who have exemplary solutions to the problems that the world today faces. In the context of persons with disabilities, from an exemplary perspective, what example have you been able to set for finding solutions to the problems that the disabled face, on account of which you were given this award?
There are a number of sequential events and opportunities. The approach I have followed is that in 2006, disability inclusion was not the norm and disability specific service provision were not widely exercised. I had the courage along with other comrades to establish the Ethiopian Centre for Disability and Development and to bring strong evidence as examples which could influence the developing world that development is only sustainable if it is inclusive. We have reached more than 3000 organisations – government, non-government, private, secular, religious, etc. Initially, it was not easy because whenever we submit projects we were asked how many beneficiaries with disabilities we had. Establishing an organisation in this fashion was not easy in part because there were bigger organisations like World Vision, Action Aid who had enough money and who were not open by then to entertain disability inclusion as the core theme that they wanted to work on.
We hired persons with disabilities themselves to show the road for inclusion because we thought the usual way by just hiring development professionals to talk about disability is more theoretical. So I think the steps we took to be bold on inclusion by hiring qualified persons with disabilities and put them as expert guides for the inclusion process was a very innovative approach where we were able to influence a number of big organisations including bilateral co-operations in our country. It is now the norm and is being widely exercised but in 2006 that was not the case. We were lucky to have the Convention [United Nations Convention on the Rights of Persons with Disabilities] adopted and ratified which also demands for inclusion. Those experiences are now strong evidences.
- You published the Guide to Accessible Ethiopia’ – listing how accessible official buildings, hotels and restaurants are to people with disabilities. An audit report here in India indicates that not even a single public building in the country is fully accessible. What strategies would you recommend for addressing this problem in a systematic fashion?
This is an interesting question. I think accessibility is a pre-condition for enjoying all the rights enshrined in the Convention. I believe it is something that can be done easily and it should not be understood very narrowly to restrict it only to physical accessibility. The Convention has a broader view on accessibility than merely physical accessibility. There needs to be a law which mandates all building to become accessible. As we know, the cost of making modifications to buildings to make them accessible is high. In the meantime, working on accessibility from the very beginning of the project is not costly as indicated by a number of studies. Accessibility as such does not require big money. It should be a pre-condition and mandated by law – lack of accessibility is definitely and rightly considered a violation of human rights.
Lastly, it is not about using big technology or investing a lot of money, it is about respecting one’s right and undertaking one’s duty. I believe that we cannot make all buildings and information accessible overnight. But we can take the starting steps today. We cannot get there tomorrow if we don’t start today. In this regard, I also think it is important to celebrate those who have taken steps toward accessibility – they have proven to make their facilities accessible. There are hotels who decided to demolish ramps and work on something else. We shouldn’t leave it to others to decide, it is a right. People have a right to go to recreational centres and that right imposes an obligation on the recreational centres to make it accessible. I don’t think you need to be the number one economy in order to have accessible infrastructure. It is the matter of understanding it is as a right and doing it right from the beginning.
12. In 2005, you co-founded the Ethiopian Centre for Disability and Development (ECDD) in order to address the weak cooperation between disability organisations, specialised service providers and mainstream development programmes. Could you kindly describe to us in greater detail the role of ECDD in making Ethiopia inclusive and accessible? Many a times, recommendations made by organisations remain confined only to paper and execution of the recommendations continues to remain a challenge. How do you ensure that your recommendations are actually implemented?
I think it is the matter of changing the culture. We really need to play the accountability game. And the accountability game would require strong disability rights based organisations. And government should be open to learn from their mistakes and from other governments. I believe we should empower organisations who are working for persons with disabilities, not only to be active in Geneva for the Convention accountability and review, but also in their country, in their day to day life where access to transport is denied. They should go and say “You have violated my rights”. There should be a penalty. Empowering persons with disabilities to claim their rights because this segment of the population has been in the deep charity model before. Whenever they were denied access, it was because of the goodwill of the individuals, they would go home. Now we should ensure that they don’t go home – they use their qualifications, courts, existing administrative customary law to demand their rights. Governments say that they don’t have the knowledge on accessibility. If they don’t know, they should be willing to learn and we know that it is not like a software where you can put in a software and everyone can operate it at the same time. I think a learning government plus a demanding disabled community, will help to make these rights become a reality.
The IDAP interview series aims to solicit actionable insights from lawyers with disabilities on the strategies adopted by them to excel in their field. The series also seeks to educate and increase awareness within the legal fraternity, with the ultimate aim of fostering meaningful dialogue on reasonable accommodation for persons with disabilities. If you have any comments/feedback on our series or if you would like us to interview a lawyer, please reach out to us at firstname.lastname@example.org.
You can read our other interviews here.