Sendung 19: Talking with Yetnebersh Nigussie

[Musik barrierefrei aufgerollt] Music with spoken text: barrierefrei aufgerollt – kurz, kompakt und leicht verständlich

Katharina Müllebner: Welcome to our radio show „barrierefrei aufgerollt“ by BIZEPS – Center for independent living.

I am Katharina Müllebner.

Today, we would like to introduce you to Yetnebersh Nigussie, a 35-year-old disability rights advocate and lawyer from Ethiopia.

For a long time, she has been fighting for the rights of people with disabilities. In 2017 she was awarded with the Right Livelihood Award for her ongoing commitment.

Nigussie went blind at the age of five. Her activism started at a very early age. In school, she led the students council. During her time in university she co-founded and led a female students council.  Yetnebersh Nigussie also co-founded the Ethiopian National Disability Action Network.

Since 2016 she is working for Vienna-based NGO Light for the World.

In today’s interview, she gives us a brief glimpse at her life and her career.

[Überleitungsmusik]

Katharina Müllebner: Please introduce yourself to our listeners. Who are you and where are you from?

Yetnebersh Nigussie: My name is Yetnebersh Nigussie and currently I am working as a Senior Disability Inclusion Advisor in Light for the World. I am originally from Ethiopia, but I work now globally.

Katharina Müllebner: What do you do for a living?

Yetnebersh Nigussie: I am a lawyer with a disability, so I am employed in Light for the World as their Inclusion Advisor, so I do full time advocacy on disability and rights of persons with disabilities.

Katharina Müllebner: What kind of projects are you currently working on?

Yetnebersh Nigussie: I do work on a number of initiatives that Light for the World is supporting, that includes a number of community-based rehabilitation programmes that we run in different developing countries, in more than 17 countries in the world.

I also practice a bit in the implementation of the sustainable development goals, as well as in the implementation of the Convention on the Rights of Persons with Disabilities. 

Katharina Müllebner: How do you feel about winning the Right Livelihood Award?

Yetnebersh Nigussie: *laughs* Well, I think it is a great achievement winning the Rights Livelihood Award, because it is also very prestigious and it brings you together with other very prominent laureats, who have done a lot for their community – for the world.

The reason I won it was because of my innovative approach to a call for inclusion, instead of specialised services for persons with disabilities in Ethiopia.

Katharina Müllebner: Is there any support for people with disabilities in Ethiopia?

Yetnebersh Nigussie: Yes, there are a number of supports for people with disabilities in Ethiopia. Most of the support comes from the families, because government does not have a lot of support services for them. So families, mostly bring the service, the support services that people with disabilities need, including if they want to go to work, including if they want to go to school. So families are supposed to provide services.

However, there are also support staff that people with disabilities get more from the community, as their social security system is not very strong in Ethiopia. The government tries to support in some ways, like provision of prostheses and orthopaedics and also free access to schools and so on and so forth.

But most of the support that people with disabilities are getting in Ethiopia are either from the community or from their families.

Katharina Müllebner: What is the current situation of people with disabilities in your home country?

Yetnebersh Nigussie: Well, still people with disabilities lead undignified lives and they are mostly hidden in their houses, not having access to basic services in their community, including education, health, livelihood and so on and so forth.

So yes, there are some encouraging legal reforms happening, including the formulation of policies after the UN Convention on Rights of Persons with Disabilities ratification, but there is still a long way to go to really achieve full and effective inclusion for persons with disabilities.

Katharina Müllebner: For women with disabilities, is it especially difficult to achieve education or to get a job?

Yetnebersh Nigussie: Yes, definitely. Women with disabilities are double discriminated or double disadvantaged in Ethiopia, as well as in quite so many countries, because disability movements mostly are headed by male figures. So women’s disabilities tend to be only very, very low profile. We do not see them becoming leaders.

They also are excluded from the mainstream women’s movement, from the feminism movement, because there is also a misunderstanding there, that women with disabilities should be handled by the disability movement, so they tend to be excluded from both.

And this is not only in my country Ethiopia, but also, if you see globally for example the UN Convention on Rights of Persons with Disabilities Committee has got 18 members out of which only one is a woman. So this reflects the fact that women with disabilities are far, far left behind, both in their disability as well as in the women’s movement, in the feminism movement.

This is also confirmed in the World in Disability Report, where it clearly shows that there are more women with disabilities than men. But access-wise women have quite less access than their male counterparts.

Katharina Müllebner: Can you describe the situation of women with disabilities in Ethiopia?

Yetnebersh Nigussie: In Ethiopia women with disabilities are among those less educated. For example if you talk about education, only four percent of children with disabilities are in school and out of them less than one percent are women or girls with disabilities.

As you know, less education would lead to less access to other services, including health, employment, livelihood, justice etc. so women with disabilities still lead very undignified lives and they don’t often go to school for a number of reasons, including parents becoming overprotective about their girls with disabilities.

But they also in the meantime would witness a lot of violence, as they are not empowered and they do not claim their rights. They get raped by strangers, as well as people in the house, because mostly they remain in the house.

And even in times where violence has been committed against them, access to justice is very far, because they do not have assistant devices. They cannot go to the police station, or even though they could go there, they do not have a sign language interpreter to explain what they really want to say. This and other barriers prevent them from fully enjoying their rights.

Katharina Müllebner: You told us it is very hard for women with disabilities in Ethiopia but you are very well educated. Why are you an exception?

Yetnebersh Nigussie: I would think it was because of the strength of my mother who decided to send me to a special school then, because there were no regular schools taking blind children. So many parents have decided to keep their children in the house, because they do not want to send them very far.

The fact that I was given the opportunity to learn and also the fact that I used that opportunity very well, brought me to the level of success I have today and I believe that that is the secret.

I call education as my liberator in life and it was only through education that I got an independent life.

So it depends on the consciousness of your family and the steps that they take to get you where you should be.

Katharina Müllebner: How did your disability influence your life?

Yetnebersh Nigussie: It totally influenced my life. For example I was born in a rural area, where early marriage was exercised, like girls getting married when you were eleven or ten.

So when I turned blind at the age of five, I was no more wanted to become married, so I was considered unfit for that community. So that brought me out of that community, because I was not needed, I was not fit. And then I got education and through that I became who I am.

In general, all my work, including my advocacy work, is highly influenced by my disability, because I base those arguments, based on the evidence that I have, based on the experience that I face every day, I could say that disability has strongly influenced my life.

Katharina Müllebner: You told us that you were seen as unfit to marry. Are you married now?

Yetnebersh Nigussie: Yes, I am married now and I have two daughters. And it is different when you are educated and when you are employed. You have more chance to marry. You can win the prejudice, you can win the mix, the assumptions that people have about your disability.

Katharina Müllebner: Are there any events in your life that influenced you the most?

Yetnebersh Nigussie: Yes, I could say that the time where I have joined the integrated school in grade seven, as the special schools were unable to take me after that, has influenced me a lot, because until then I never knew that I was different from others. I never knew that my ability was challenged, or my ability was questioned by other people.

So when I joined the integrated school, in a classroom full of 76 students, I had no friends. In a classroom where people fight to share a desk for four students, I was only one desk alone, because really people did not, children did not find this easy and acceptable to play with me and to learn with me.

So that taught me a lot of experiences as to how other people view us persons with disabilities and that’s when I decided that exclusion or special institutions were not really the right places to start life, as you miss out, both miss out, of being included with other children without disabilities and other children without disabilities miss out from being exposed and playing together and growing together with their peers with disabilities.

That led me to remain a life-long inclusion advocate.

Katharina Müllebner: Why did you became a disability rights advocate?

Yetnebersh Nigussie: This I think is mainly because of my own experience of exclusion. I could not be anybody else.

All the barriers I have overcome I thought should not remain barriers also for others, because, you know, we are not the beginners of disability movements.

There were a lot of challenges in the previous days. People with disabilities being put together and being burned in fire. That they are not needed. Or they were kept out of the city, in that way they are not seen by other communities. So other disability activists before us have struggled this and they have somehow overcome some barriers for us to be able to pass and to enjoy what we can.

And I really feel that we have the responsibility of also overcoming more barriers and removing more barriers and creating a barrier-free world for the coming generation with disabilities, because it is very difficult to stop disabilities. It is an evolving concept and it was there when human beings were there and it will continue to live.

So what we have to do is, to work on our world, which is liveable by all.

Katharina Müllebner: You started to be politically active at a very young age. How did people react to this and what were your biggest achievements?

Yetnebersh Nigussie: Well my first modes of activism were through a music band, where I used to sing as a singer to raise awareness in different workshops and events that were organised to raise awareness.

There I recognised that I have talents to show the people and which is against their attitudes that I have no ability, I have no talent to contribute. Rather all they saw was that I am blind and that I cannot do anything, because I cannot see, I cannot do anything.

The biggest achievements, I would say in those days of activism, were mainly the establishment of the Centre for the Students with Disabilities in Addis Ababa University, the university I came from. That was a big thing, because most of the time the issue of disability looks to be more sympathetic. People look to be more sympathetic. But they lack ownership, they lack institutions to handle it, so it was so great in a very old, more than 50 years of university, where they had trained more than thousands of students with disabilities.

There was no single institutions, which was responsible for handling the issues of students with disabilities. So that was the first achievement I would call in terms of having disability formal structure in the university.

Then based on that experience I co-founded the Ethiopian Centre for Disability and Development, which is still serving as a centre for working on disability and development in the country. It is also a partner of Light for the World now.

I think that was a big achievement, because people always put both disability and development in silos, so trying to bring those two big elements together and working on showing development actors how they can become disability inclusive, was something that I devoted my life to for nearly around 11 years. And I have seen a lot of successfully inclusive organisations who have managed both to change their organisations as well as their programmes. So I would call that also as a big achievement.

Katharina Müllebner: Do you have any role models or people in your life that inspire you?

Yetnebersh Nigussie: I have a lot of role models, but I was initially inspired by the work of Mother Teresa, growing up in a special catholic school. I grew up reading and listening more stories about the work of Mother Teresa.

So I always tried to focus on tackling invisibility and I always tried to make sure that I was needed in the community. One of the greatest needs I think is to be needed by somebody else. So I kept on contributing to the community.

But I get my inspiration from a number of sources, including even rural mothers of children with disabilities. You see, yes. You do not only learn from professors and big figures in the country, but you also learn from the striving women, from the poor women in the community. She also has her own wisdom of tackling her problems.

Katharina Müllebner: As a woman with disability, what was it like in school or in university?

Yetnebersh Nigussie: It was not easy. For example in the university I was among the very first females, blind females, who joined the law school. There were already stereotypes about what women should and can do. So for a long time in history in Ethiopia, blind people have been lawyers, but that was a reserved area only for blind males.

So trying to join law school, fighting against the prejudice that blind women cannot go to such a department requiring a lot of effort, was a big thing. So I am happy that I have succeeded to graduate and now more blind women have already joined and graduated in that law school.

Moreover, even for non-disabled girls it was not easy in the university, as the university was highly, again, male-dominated and all the systems were very gender blind, so I succeeded in co-founding the first Female Student Association and served as the first president in Addis Ababa University.

So it is really challenging for the situation for women and girls with disabilities, even in the schools. Teachers even get surprised when girls succeed with better results than boys, because the assumption is that boys are better than girls. And girls are supposed to stay home and take care of their siblings as well as supporting their mothers in house chores.

Katharina Müllebner: Do you think the situation in Ethiopia has changed since your childhood?

Yetnebersh Nigussie: Yes, it has definitely changed, but the question is, is the change to the extent what is needed?

Otherwise for example, when I was a child, as I have told you, no children with disabilities were allowed in regular schools. Now the policy has changed and every school has to take in every child with a disability.

For example during my time there were no laws guaranteeing employment rights for persons with disabilities. Now we have implemented those. At least policy-wise we have a lot of improvements and still there are, you know, you see better numbers of educated persons with disabilities who make it also to a job and to different universities. This is a change.

But compared to the population, we have 17,6 percent of our population have a disability and Ethiopia is a huge country, having around 100 million people. So it is like a drop in the ocean.

Katharina Müllebner: After all this time, do you consider yourself to be a role model for people with disabilities?

Yetnebersh Nigussie: Yes, I do consider myself as a role model for quite so many persons with disabilities and I hear that also through different avenues including media, as well as a number of interactive meetings that I have had.

I think it takes a long way to come all this way and becoming an international figure to alleviate disability based discrimination.

And yes, I confirm that when I do home visits for our community-based rehabilitation programmes, that parents are so excited to see me and then they tell me that I am their hope, for them to overcome all the challenges that their children with disabilities are facing, because they would think that their children with disabilities will be like me if they overcome, or if they educate or if they do whatever they are supposed to do.

Katharina Müllebner: What are the most important goals you want to accomplish for people with disabilities?

Yetnebersh Nigussie: I think the most important goals for persons with disabilities to achieve in future would be the same like the others.

I would think that the 17 sustainable development goals are of interest for persons with disabilities, and because of the overarching principles that they carry, which is leaving no-one behind, I would hope that they would also be achieved for all the persons with disabilities.

But in terms of priority, I would really say that inclusive and quality education would be a great priority, because this is an investment on the future generation to play, learn and grow together and this would also be instrumental in breaking the cycle of poverty.

And a generation which is educated and which has grown together, playing and learning together will not have a problem living together later on, we will not have a problem working together later on.

So I would wish that investing more on inclusive and quality education ensures a future of an inclusive society.

Katharina Müllebner: Do you think it’s important to have centers for independent living?

Yetnebersh Nigussie: No, I think it is important to advocate for independent living and normally the concept of independent living is different in Europe than the one we are talking about in Ethiopia, because in quite so many African countries, including Ethiopia, we do not have a lot of institutions. Rather people are kept in the house.

So the question in the global south becomes about being included in the community. So like they are there in the houses, but they are not out, because there are no facilities in place for them. They do not have assistant devices, they do not have the support services which will take them to the community.

Whereas in Europe, as you know, quite so many of the governments push towards institutions and living arrangements for persons with disabilities.

So I believe independent living and being included in the community are important causes to struggle for and yes, I think that is the base for quite so many other rights to be enjoyed by persons with disabilities.

Katharina Müllebner: What are you going to do with the prize money of the Right Livelihood Award?

Yetnebersh Nigussie: Yes, 50 percent of my award money will be used to support the ‘One Class for All’ campaign that Light for the World is holding in Ethiopia and in Burkina Faso. That will be used for some activities in Ethiopia. As I have told you inclusive education is very close to my heart.

And the remaining 50 percent will be going to establish a scholarship for girls with disabilities, coming from rural areas in Ethiopia. As repeatedly said, education was my turning point in life and as a girl with disability I would not have been anybody, had I not been educated, so I want to offer the best thing which has happened to me in life, which is inclusive education to other people also.

So I will be using the money, the other money also, to establish a scholarship for girls with disabilities coming from rural areas. As you know most of disabled persons in Ethiopia live in the rural areas, but services are mostly saturated in urban areas.

So there is a mismatch between the demand and the supply, so I really want to bridge the gap between this supply and demand.

[Überleitungsmusik]

Katharina Müllebner: This was our portrait of Yetnebersh Nigussie, a strong and independent woman and a fighter for disability rights.

For further information please visit our website.

This show was broadcasted on Radio ORANGE 94.0

Editors: Martin Ladstätter, Katharina Müllebner, Elisabeth Löffler

Technical Support: Markus Ladstätter

[Musik barrierefrei aufgerollt] Music with spoken text: barrierefrei aufgerollt – kurz, kompakt und leicht verständlich