Story: Jane talks about albinism

Questioning Beauty Standards

Social Entrepreneur Jane Waithera talks about albinism and inclusion

It was a profound message that Jane Waithera shared with the audience at Boehringer Ingelheim: Diversity will be the new normal – and real beauty is not only what we are used to seeing. The young woman from Kenya had been invited by Making More Health, the company’s long-term social entrepreneurial initiative. Jane Waithera fights for people with albinism.

Albinism is an inherited congenital disorder characterized by the complete or partial absence of pigment in the skin, hair, and eyes – and it is still stigmatized. Especially in African countries albinism often comes along with ignorance and superstition. As their body parts are considered to possess magical powers, people with albinism live with the danger of being persecuted and mutilated.

Visible disorder with invisible needs
Jane Waithera’s story is the story of many people with albinism in Africa: Having been abandoned by her teenage mother as a baby she grew up with her grandmother who neither had the knowledge nor the financial means to care of the special needs of her granddaughter. “In school, I was punished because I could not read and write – nobody knew about my strong myopia because of my albinism”, remembers Jane. “Children would pinch and even cut my white skin. Of course, I did not get any sunscreen to protect my sensitive skin from sunburns. Up to my 16th birthday, I did not even have an expression for my differentness.” Due to the lack of melanin, the skin of people with albinism is more susceptible to sunburns and skin cancer.

Sustainable solutions for economic and emotional needs
When Jane received her first glasses and met other people with albinism she understood that she was not alone – and decided to fight for the right of her co-fellows. In the meantime, her social enterprise “positive exposure” in Kenya, has developed into an organization that gives a voice to people that stand at the borders of society. “First we have to provide knowledge so that people understand, can accept their difference and stand up for themselves”, she explains the principle of mentorship. To be a part of society. People with albinism have a lifelong need for expensive visual aids, sunscreen, and medical care. To provide the financial basis, Jane develops sustainable solutions like micro-savings, entrepreneurial training, and support of own startups.

Cooperation with Boehringer Ingelheim’s social initiative Making More Health
“Jane is one of the most fascinating social entrepreneurs who I have met during our Making More Health activities,” explains Manuela Pastore, global lead of MMH. “Her reports show that the patients’ needs are going far beyond medical care and that inclusion is more than a balance based on figures. As part of our MMH activities in Kenya, we will start some projects together with Jane dedicated to information and health education for skin diseases and people without a lobby.”

Inclusion allows diversity to flourish
At Boehringer Ingelheim Diversity & Inclusion is not a mere promise but a reality. Diverse opinions, experiences, and talents shall grow in an atmosphere of trust and respect. “Inclusion has an important meaning for Boehringer Ingelheim because it is a prerequisite for diversity,” Brigit Giakolas, Head of Diversity & Inclusion, says. “We want to provide the framework for inclusion to allow the many aspects of diversity to flourish.” Among other activities, the company offers training for inclusive leadership and unconscious bias. “Jane Waithera demonstrated very clearly what inclusion – or the lack of it – means for a diverse society”, Giakolas adds. Jane herself describes inclusion in her own way: “Inclusion is like making a cake. The ingredients cooked separately will not make a cake – you have to make the mix work.”

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