Mothering & Albinism

I.K., United Nations, Geneva (Photo Credit: Harry Freeland, Standing Voice ) Ikponwosa Ero (I.K.) was designated as the first United Nations Independent Expert on the enjoyment of human rights by persons with albinism in June of 2015. During her six years on the mandate, she initiated movements in various sectors and collaborated with stakeholders in… Continue reading Congratulations, Ikponwosa Ero!

Every year since 2015, global communities celebrate June 13 as International Albinism Awareness Day. A day established by a United Nation's General Assembly resolution passed on December 18, 2014 to celebrate persons with albinism and their accomplishments throughout the world while raising awareness of albinism. As a team we will pause on June 13 to… Continue reading June 13: International Albinism Awareness Day #StrengthBeyondAll Odds

Innocentia's sister, Elma. The last born in a family of nine, I spent most of my childhood in Chitungwiza, one of Zimbabwe's most densely populated townships which started out as a dormitory town in the 70s. The most enduring memory I have of my childhood is that there were always people coming to our house.… Continue reading For Elma and the many other mothers impacted by albinism

The following is a conversation between Mpho Tjope (MT), Founder & Director of Albinism Advocacy for Access South Africa & Chairperson of the South Africa Albinism Taskforce and Emma Strobell (ES), Project Coordinator for the Mothering & Albinism project. ES: Where do you call home? MT: I was born and raised in Delportshoop, Northern Cape,… Continue reading Together for change: In conversation with Mpho Tjope of Albinism Advocacy for Access

Organizing data for a large research project typically poses a challenge, particularly when data includes various types of files (e.g., transcripts from interviews, academic literature, grey literature, and photos) (Houghton, Murphy, Meehan, Thomas, Brooker & Casey, 2016). We have chosen to use NVivoTM software to help organize our data as well as assist with analysis.… Continue reading Leveraging technology: How NVivo™ is supporting our qualitative data analysis

Conducting research in three countries with team members from eight universities and three civil society organizations (CSOs) makes for a rather complicated Human Research Ethics Board (HREB) approval process.  Rightly so.  To conduct global health research, especially in contexts of varying resources, colonial legacies, and histories of research that have not tended to local concerns,… Continue reading In Advance: Tending to Human Research Ethics (Part I)

My name is Victoria Fowler and I am an undergraduate research assistant in my third year of nursing at Trinity Western University.  I have had the privilege of working alongside the Mothering and Albinism research team to gather information and raise awareness about this very important topic.  My role in this project has been to… Continue reading Summary of UN Reports on Albinism & Human Rights

In many parts of the world, mothers affected by albinism—whether as mothers of children with albinism or themselves with albinism—are disproportionately impacted by a constellation of health-related stigma, associated worldviews and human rights violations.  Read our Open Access paper (available at link below) about our critical ethnographic study in Tanzania, where we engaged with the… Continue reading Mothering, Albinism and Human Rights: The Disproportionate Impact of Health-Related Stigma in Tanzania

A panel of mothers impacted by albinism.  Participants from across the African continent.  Researchers presenting on our mothering and albinism project in South Africa (Dr. Sheryl Reimer-Kirkham), and on the psychosocial impact of albinism (Dr. Jennifer Kromberg). The UN Independent expert on albinism’s report on women and children with albinism (Ms. Ikponwosa Ero). Expert facilitation… Continue reading Albinism Awareness Month in South Africa: An online webinar on mothers impacted by albinism