In consultation with civil society partners, the International Disability Alliance called for the Civil Society Forum, as an addition to the Summit, to leverage the...
Interview with Mr. Anderson Gitonga, Kenya Disability Caucus
“Kenyan civil society and the Global Disability Summit: A discussion with Anderson Gitonga Kiraithe”
-My name is Anderson Gitonga Kiraithe, I am the from Kenya and I am the director of the umbrella organisation called United Disabled Persons of Kenya (UDPK). To us, this is a very important conference because of two things: Firstly, this is a precious opportunity to recognise and celebrate persons with disabilities and appreciate their contribution in the society. In relation to this, I would like to thank DFID and IDA for organizing such fora together with the government of Kenya, it is a historical moment. Secondly, this conference is important to enhance our dignity as persons with disabilities. Because we participated in planning this conference, my expectation is that both the governments as well as the development partners will come up with new commitments, especially in the area of involvement and promotion of the participation of persons with disabilities and their representative organisations in the development of laws policies and programmes that affect persons with disabilities. We also hope that development partners will move towards a paradigm shift in terms of their funding in national support and that we will see more financial support directly channelled to organisations of persons with disabilities in order to build their capacity to advocate and participate and strengthen these institutions at a local regional and global level. All the themes in the summit are important for the work that we are doing, and we are happy about that. What is key to us is that universally we have policies, laws, and the UN Convention on the Rights of Persons with Disabilities (CRPD), but we would want governments and other partners to also move from intent to practice. For example, in Kenya, there are laws in the area of education, employment, etc., but we need to actualize these laws by coming up with a clear program supported by adequate budgets and work plans in order to change the lives of persons with disabilities. We want more programs that promote employment of persons with disabilities, clear laws that do not discriminate against us, disaggregated data that will help to monitor the traditionally marginalized groups and the most left behind persons like women and girls with disabilities, persons with intellectual and psychosocial disabilities, deafblind and those with invisible disabilities, for example people who have low vision.”
Interview with Ms. Asia Yaghi, I am a Human
“Persons with disabilities in situations of risk and humanitarian emergencies: a dialogue with Asia Yaghi”
- Dear Asia, could you please start by introducing yourself?
-My name is Asia Yaghi, I am the chair of the Women Committee of the Arab Organisation of Persons with Disabilities (AOPD) and I am the chair of ‘I am a Human’ organization, in Jordan.
-Can you tell us a little bit about your work in Jordan with persons with disabilities in situations of risk and humanitarian emergencies?
-In Jordan, we are working on several themes, in order to support and empower refugees with disabilities coming from different countries, without exceptions. We collect information and data on them, we visit refugees with disabilities weekly and monthly to check which are their needs. We check if they can go to school if they need some services like physiotherapy or psychotherapy or just occasions to get in contact and be included in the local community. We consult and work in close contact with NGOs and humanitarian partners and also organise activities to ensure participation in the society. Our organization, “I am a Human”, is necessary because, a DPO, as a person with disabilities, we can understand what are the challenges that need to be addressed for refugees with disabilities. If we don’t fight for refugees with disabilities, and for the Jordanian persons with disabilities, nobody is going to do it.
-In the course of your work, what have been some of the key challenges you’ve faced and the lessons you have learned with regard to promoting the inclusion of persons with disabilities in humanitarian action? Which are the actions do you plan to take to address these challenges?
- First, some of the families of the refugees with disabilities might not accept the disability of their child or be ashamed of it. Second, the community thinks and complains of the fact that refugees take a lot of services because there are a lot of NGOs, but those services operate on a charity basis, while refugees with disabilities need their rights to be respected. Some international NGOs think about their agendas, not focusing on the real challenges faced by persons with disabilities. DPOs are on the field and their lived experience of living with a disability gives them the expertise to be able to recognize the priorities and solutions that need to be taken in order to make the investment more effective and the programs more useful. Another big challenge in our work is that many of the refugees with disabilities don’t have access to school, even before they flew from their countries. If you want to take them to the school, it is difficult to put them in the right class. We are in a continuous fight, we are raising our voices to say that we need to address the needs of all the refugees with disabilities in the world, no matter from which countries, we are all humans. We are starting using the media to spread these messages and we will do it more. We want everyone, especially the decision-maker, to understand our position, to be in our shoes. We want to show more success stories, in order to show which are the rights ways to help refugees with disabilities to be empowered.
-What knowledge and expertise can DPOs bring to the table which will enable humanitarian actors to evolve their practice and make humanitarian action more responsive to the situation of persons with disabilities in the long-run?
-We are always on the field, we face the problems every day, also on ourselves. Decision makers may struggle to understand the real prioritie, and are available to help. Because we have this lived-experience, passion, they can understand how they should act to change to change the lives of refugees with disabilities. The change arrives when you, yourself, see the obstacles, and find the solutions to each one of them. What I would like to say to decision-makers is not to make any decision without us, because these decisions will affect our lives, so: ask to us first, include us in all the phases of work!
Interview with Ms. Tapiwa Gwenlisa Marange, Alive Albinism Initiative
“Art. 8 of the CRPD, Awareness raising to leave no persons with disabilities behind” Interview with Tapiwa Gwenlisa Marange
“My name is Tapiwa Gwenlisa Marange, and I come from Zimbabwe. I founded an organisation of persons with albinism in my country, which is called Alive Albinism Initiative.
Africa is mostly populated by the black people, and giving birth to a child with albinism might look really strange. Albinism makes people suspicious because albinism comes with a lot of misconceptions and lack of knowledge. People tend to believe that we are magical creatures, witches.
Discrimination and stigma start from our birth: Doctors are surprised seeing these kids in the hospital, and when we grow up the situation doesn’t get any better. We struggle in access to education and in being included in the society, and for women, it is even more difficult during all the course of our lives. Most mothers in law, for example, do not accept a daughter in law with albinism in their families because they think that women with albinism are a punishment from God, that they are the result of a crime that was committed by their ancestors. Because of these wrong beliefs, none wants to employ us, so we cannot really be independent and have the same opportunities as everyone else. Because of the exclusion from the world of work and the consequent lack of economic empowerment, a lot of persons with albinism are dying of skin cancer. In fact, our skin is really affected by the sun, we would need to be able to afford expensive products to protect it.
As women, we have another problem with men with HIV/AIDS because there is the myth that if they have sexual intercourses with us, they will be cured. This conviction causes a lot of situations where women with albinism are sexually abused. Moreover, people in Tanzania, Malawi, Zambia, Mozambique believe that the bodies of albinos are magic so there is a real traffic. Albinos’ bodies can be cut from their beloved ones because they need money. A 10-years-old child in Mozambique was recently killed after the parents sold him. This is not the only case, we need to stop this practice by explaining that our bodies are human bodies and that we have nothing to do with witchcraft.
At the basis, there is a lack of understanding. That’s why we first need to work on raising awareness, so that people understand what albinism really is and that persons with disabilities are just persons, not magical creatures.
We are all citizens of the world, albinism is in animals and human beings. This is our priority now, we must explain and accept albinism as a factor of human diversity. It is critical to understand and tackle this stigma, that’s why we are here, attending the Global Disability Summit. We want our voice to be heard, and we want to learn from others so that when we go back home, we are stronger than before. Usually, persons with albinism are one of the most marginalized group, so it is time for us to shine our light to the world. Society needs to see us for how we are and for the value that we can bring to our communities.”