Better life for people with albinism – human rights, community, health and a call to action

“I met my wife six years ago. Two years ago we married and got our child. A child with albinism”, tells me the Kenyan father during a tea break. “We were shocked. We did not even know very well what that would mean”, he adds while he looks with a bright smile at his child. He is one of the few fathers who came to our launch event, “Albinism and I”.

In many cases when it happens that a white colored child is born by dark colored couples the mothers rest alone. Albinism is still seen as a huge burden and sometimes even as evil.

“My mother, she still now has a lot of issues that I have a child with albinism”, adds another mother. “She cannot accept”. The mother has a very vivid and happy 1.5 years old girl.

A keynote by the Kenyan Human Rights organization

Dr. Bernard Mogesa , CEO of Kenyan National Commission on Human Rights
Dr. Bernard Mogesa , CEO of Kenyan National Commission on Human Rights

The “Albinism & I” day is an amazing, incredibly important day – for everyone in the room. Ca. 50 people have joined: Teachers, midwives, parents, the CEO of the national Kenyan Human Rights organization, and a lot of persons with albinism (PwAs).

The agenda

The agenda of the day is busy:

  • To learn about a new online platform “Be-in-be-you” which has been set up in collaboration with Making More Health* as a part of Positive exposure Kenya information sources.
  • To discuss which topics and activities should be added to give support to PwAs, but also teachers, midwives, parents and friends
  • Community building among all people in the room

“When baby’s with albinism are born, midwives should recognize it and inform as soon as possible the parents where they can get support from,” says a PwA.

Another woman explains that “often suncream and good glasses are not affordable.” It is the environment, the assumptions of other people that is limiting PwAs to grow and live a life with dignity. Many of them have also huge financial issues. Rarely they find jobs although some of them are very educated with a lot of entrepreneurial spirit and resilience.

Invisible Issues that matter

“It is not always the case that teachers do not know about albinism and that children with albinism should be protected from sunshine. It’s sometimes the case that they simply don’t care.”

A lot of superstition, violence and inclusion topics need to be solved. Still today many PWAs in African countries are heavily maltreated and not seen as equal part if the society. In Kenya it is assumed that the prevalence of albinism underlies a ratio 1:1500. Often superstition and missing knowledge lead to violence and non-acceptance.

But there is hope to be able to change together. “We need to raise more awareness and to build a community to empower ourselves. Together we can make it’, that’s the big hope in the room

The launch cake for “Albinism and I”
The launch cake for “Albinism and I”

Talents in the room

During the workshops sessions it gets very clear that these kind of discussions go much beyond the medical diagnosis of albinism. It is about dignity, income generation and happiness. About accessibility issues and affordability. About dreams of a better life, esp. for the next generations.

The talents of these PWAs are so many: great speakers, appassionate leadership skills, innovative ideas… a young man has founded a soccer team of PWA boys “to empower them and to give them more self- esteem”.

A call to action for you

Together with Jane Waithera, a social entrepreneur and lead of positive Exposure BGO in Kenya we will definitely to the next steps together to empower PWAs and all stakeholders to be able to raise more awareness under the umbrella of Making More Health Initiative from Boehringer Ingelheim.

However, besides these activities there are some individual issues me personally would like to help with:

As many PWAs have very old and broken mobiles only and some of them are unable to pay for skin protection and doing regular screenings for themselves and the children I need urgently some donations: Money, tablets and ambassadors to share our knowledge platform

If you can help, even with a small amount, please contact me at Pastore.manuela@googlemail.com to share bank details. Of course you will get pictures and learn what is happening with your money.

Let’s make the change happen that we want to see in the world!

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