Oral History Excerpts

Yetemegn Gelaw
Ethiopia

Introduction

The Oral History Project

Recovering Voices From
the Distant Past

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Stigma, Identity and Human Rights
Conference on Robben Island

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Terminology

Books Written by People Who
Have Had Leprosy

Contact Information

Yetemegn Gelaw. Photo by Rosalijn Both

Gonder is a rural area; my parents were farmers.  I was brought up in a farming life and I helped my parents with farming.  I married when I was around the age of twelve.  I lived with my husband for around eleven years.  We had children together.  I gave birth to one child but she died soon after I got sick with this disease.  Two years ago I came from Gonder to Addis Ababa.  After I became affected with this disease, I divorced. I decided to divorce because there exists a big stigma in that area.

I was living a good life and enjoying a good living standard.  This disease interrupted my good life.  My husband was in an economically good situation. He lived in the same area where I was living. The marriage culture in our area at that time was that two relatives (his father and my father and mother) would choose for the two of us based on the interest of the family.

Until the day of our marriage I didn’t know and hadn’t seen my husband. The marriage is the first day of contact.  After we were joined together it was a good life. I enjoyed a good life until I got infected.

There were neighbours living nearby who were affected.  They told me “this is leprosy”.  I knew about the disease.  I had the information but due to stigma and fear of this disease we kept those people at a distance, including myself.

I was anxious. The whole family cried for one day. It was a big issue about how it came to appear in our family.  I was about 23 years old.  They asked me to divorce my husband and to find local medication.  That was their reaction. They think that sex is responsible for this.  So, therefore I divorced from him.  My daughter was left with my husband but she died.

Getting this disease happened by chance, just like any other disease. I got infected so I don’t blame anyone. 

It was my decision to come to Addis. I had isolated myself back in Gonder. Against the will of my family I came to Addis on my own.  My parents believed in using local medication and thought it could cure me. I tried local treatment for five years.  It was some herbal medication that you drink and it is used to paint. Meanwhile I heard information that there was medical treatment available in Addis, that’s why I came here.  As soon as I came here I was seen at a hospital and I started medication. I received no other help, just the medication.

I was very happy.  There is no isolation or discrimination here because we live in a community with similar people.  The medicine helped me much.  However, after I started to work hard and to get physically engaged in many activities, some disabilities occurred.  I joined the community and I married someone from the community.  We have the same medical problem, he is from my birthplace. We talked together to help one another, that is how we came together. After we came to live together we built a house and I gave birth to a daughter.

Today, I even go to Gonder, nobody will isolate me nowadays.  I meet my relatives in town.  There is no isolation.  I sometimes do feel the stigma, since there are still some people who isolate us.  When I go to town and look at many healthy people who are dressed well, I see myself and feel sad.  Some will see me and make a sign of sadness (a pitying gesture with their mouth). When I see people doing that, I feel uncomfortable.  Everyone who is better than me sees me like that; so it happens daily.  I remember that I was healthy once, when I was born.  Whenever people make that sign to me, I feel sad for myself.  There is nothing worse than this. There is nothing bigger than this.

I started working here [at the embroidery cooperative] 33 years ago.  We want to be able to support ourselves instead of being dependent on begging.  That was an important reason to start this association. I am spinning here.  There are some organisations that help us financially.  It is the only experience that I have.  I have lived on it from childhood on.  Therefore I cannot do anything else.  If I could do something better than this, that would be good.  This is the only choice I have.

-- Interview conducted by Rosalijn Both with translation by Dr. Tesfaye Jimma.  Copyright 2005 Yetemegn Gelaw and Rosalijn Both.

[Note:  At the time of the interview, Yetemegn Gelaw was 65 years old, having contracted leprosy when she was about 23. Rosalijn Both conducted the interviews with women in Ethopia as part of her thesis, the main goal of which is to give an overview of the experience of women affected by leprosy in Ethiopia in the context of the Ethiopian world view.  In September, 2006, Ms. Both began studies for a Master’s Degree in Medical Anthropology.]