Her Body, Her Rights
The sexual and reproductive health of people with disabilities is a taboo topic in many societies. How did the topic come into focus for Light for the World?
I would not even use the word taboo because I don’t think that people feel uncomfortable about it. It’s rather that they don't think of people with disabilities as sexual beings. But it’s a very contradictory thing because at the same time, there are quite a few stories of abuse. There is not a lot of repercussion for sexually abusing a woman or a man with a disability because it’s not so much in the view of society. I would think of it more like “Do you have value? Does your body have value? Do you as a person count in society?” When I did my research on violence against children, it was that same thing, “Do you get the value?” The kids who did get the value immediately got a form of a protective network. And the kids who had not really built up that value, either within the family or with the neighbours, were way more vulnerable to abuse.
Did you bring the topic up with Light for the World?
Yes, I did. It started with my research on child protection and the whole issue of abuse and what I said about “Do you have value?” Years ago they made a short film about our colleague Yetnebersh Niguessie, and she was telling blind girls, “Probably you are thinking, if any man gives attention to me, I better go for it because this may be the only chance in my life. I am telling you: you should respond when you feel this is the right person for you and not because you think that you better take your only chance." That also triggered the question “How do you value yourself? Are you confident enough to be picky about your relationships?”
So I was looking for things that we could use in the community around sexuality, and there was very little. We decided we'd sit down with our partners from the CBR network and wrote down the idea and very much let us be led by the partners. So there was the concept: It’s going to be about sexual and reproductive health for women with intellectual disabilities. There will be one training, and then you come up with a nice idea, and you try it.
What were the most noteworthy or touching experiences you had during your talks with the girls in the project?
It was just so cool to see them standing up confidently, saying what they had figured out. They were very explicit and confident about what they had learnt. They had gone through a lot of the reasoning of why you would want something or not want something. That was really cool. What I found really touching was that they said, “What was not good was that you did not involve the boys. They were saying ‘You are hiding some secret from us. What is this secret? We want to be involved, too.’” They had worked a lot around menstruation, and I said: “So, do you want to talk with boys about menstruation?” And they answered, “Well, no. But you have to figure it out because we have to do it with them.” They were absolutely right! And they said it in a very clear and good way.
Were their own sexual desires also a topic?
This needs more time. The mothers expressed a bit that they now see their girls more like sexual beings, but to them, it was very much about protecting them from sex. In Awassa there was the discussion of a mother who was always shooing her daughter of when she talked about marriage or anything and that now, even though it was not conclusive, she was more open to the idea that it might be an option that her daughter would have a relationship, get married, and have children, but I think we did not get very far there yet.
To you as a Dutch person living in Ethiopia, what are the most salient differences in attitudes towards the sexual rights of people with disabilities in Ethiopia and in Europe?
A huge difference is the fact that because people in Ethiopia live more in a community, the raising of a child is not such a difficult ethical topic. In Europe, the immediate topic is “Do we need to take this child out of parental care because of the safety of the child?” In Ethiopia, because lots of these girls live in extended families, these kids are raised by a whole network of relatives. So a pregnancy is not a very big deal. That part is easier and gives more opportunities to have a sexual relationship and children because it’s less individual.
How can CBR workers support girls with intellectual disabilities in terms of sexual education?
The whole project idea was to get the topic more into the heads of people. What I heard from other projects is that CBR workers are now more comfortable about raising the issue with girls and their families. They could also link up more with the local health care system to make them aware that this is a need. There’s huge work going on on contraception, family planning for youth in Ethiopia, but girls with disabilities should also be included and be given space in those programmes. We are also starting a new project called “Every Life Matters” which will run in Mozambique, Rwanda, and Ethiopia. There, we will work with mainstream partners to see how they can make the sexual and reproductive health and the eye health services and treatment of neglected tropical diseases like trachoma more inclusive to people with disabilities.
Will the sexual rights and self-awareness of boys with disabilities also be a priority in the follow-up to the study?
For me yes – for the girls it was, too. The reason why boys were not included was that the funding was earmarked for girls. But we will have a project and there are partners involved. I think it should be, absolutely.
Girls with cognitive disabilities are among the groups that are most vulnerable to sexual abuse. Are our programmes already helping them protect their rights or is that something we still have to implement?
A message to the whole international development community, including ourselves is: we must do everything we can to ensure stronger participation and empowerment of the kids themselves. It’s very often about and for, not by or with the children. It is also about letting the kids be in the driving seat. For example: The girls were absolutely right about including the boys – none of the staff had mentioned it.”
How do we get them into the driving seat?
We could have them gather in groups, using different methodologies. You can use things like photo voice, where you let kids go out and take photos of places where they feel safe, of places where they feel unsafe and why that is. You could do a story and ask how they feel about it and how they think the story could change. There are a lot of beautiful methodologies.
Are we looking into new partnerships for the follow-up project?
I have approached Change, who make little books with easy words about relationships explaining the difference between a friendship and a sexual relationship. I am trying to approach them for a workshop in Ethiopia. What they do is that they have the workshop run by people with intellectual disabilities explaining. The way it should be done!