By Mathias Mazinga
Annet Nakyeyune Tibaleka had always dreamed of beautiful babies and a happy marriage. But her dream was shaken in 2002, when she realised that her firstborn child was a Little Person.
“It was a bad experience. Whenever I looked around and realised that all people I knew had babies that society regarded as “normal” and “cute,” I felt a significant loss.
And the derogatory names and insensitive remarks people used to make about my baby hurt a lot. It was a moment of denial and resentment. I felt bitter about God and life.
I asked God many questions. Why me? Why my firstborn? My family and friends also advised me not to come out openly about her situation, fearing that I would be stigmatised. Some advised me to dump her at my mother’s place in the village. They wanted me to keep it a secret and move on with life.”
“But at one point I decided not to lament anymore. I realised I needed to do something to change my situation and support my daughter. I had to accept my responsibility as a mother to create a better world for her. To shy away from my daughter would also reflect negatively. It would imply that she had a problem. I wanted her to enjoy life like any other person.
I accepted my daughter’s condition and resolved to concentrate on her capabilities as I also attended to her challenges.”
Nakyeyune started by researching on the condition, its causes and challenges so that she could distinguish myths from facts.
“I resolved to love my daughter, because nobody would love her for
me. I also ensured to give her the best health-care and education I can afford. I vowed to fight discrimination and to dispel the misconception about dwarfism. I could not allow my daughter to be looked at as a circus-object or a clown.
My dream for her is to become a respectable member of our society. It was out of that renewed love and commitment to my daughter that I named her Love Ann Marie Nansubuga. She is now at Agha Khan Primary School.”
Some of Nakyeyune’s Little People with their products
Little People of Uganda
Little People have been subjected to discrimination. It is not uncommon to see people stifling laughter, or making rude comments, when they meet a person affected with dwarfism. Because in 80% of cases they are the first and the only ones in a family, many little people have been rejected by their families including their own parents.
Many of them have been denied education, while others drop out of school due to discrimination from fellow students and teachers.
Many Little People have been denied employment, regardless of their qualifications. Some people think Little People are either Congolese or pygmies. Others think they are ghosts or sub-human. Unfortunately, Little People are exploited by people who use them to act as comedians.
Recognising this Nakyeyune started an organisation, Little People of Uganda, to improve the quality of life and champion the rights of Little People. It is the only local support organisation for Little People and parents of children affected with dwarfism. The organisation, whose headquarters are in Kamwokya, has been in existence since 2008.
Who is Nakyeyune?
lAnnet Nakyeyune Tibaleka was born in 1977 at Mbiriizi, Lwengo district to Rose Ndagire and Sylvester Kaddu.
lShe attended Mbiriizi Primary School, Kabukunge Muslim Secondary School in Mityana and Makerere University, where she pursued a bachelor’s degree in development studies.
lNakyeyune holds a Masters’ of Science Degree in Environment and Natural Resource and a Master’s degree in Development Studies, from the University of Cambridge, UK.
lShe worked as an assistant lecturer and as a researcher at Makerere University. lShe also worked as the executive Secretary at the Uganda Wildlife society from 2007-2011.
lNakyeyune worked with the Association for Strengthening Agricultural Research in Eastern and Central Africa. She later left, to concentrate on serving the interests of Little People.
Impact of the organisation
Nakyeyune has used her organisation to raise public awareness on dwarfism.
The organisation has about 1,500 members and representatives and community advocates in eastern, western, central and northern Uganda, who mobilise little people and their families for community development.
The organisation has a newsletter, which gives the members the opportunity to share their experiences, challenges and visions and also gives them a forum for networking.
The organisation also educates the little people about their condition. Although many of them do not know the specific condition of dwarfism that they suffer, they know the facts about the causes of dwarfism.
Through awareness campaigns and family outreach programme, Little People have been reunited with their parents and relatives who had rejected them due to ignorance and misconceptions. Many Little People have also been empowered economically and are involved in income-generating activities. Many of them now do handicrafts like ear-rings, bags and mats out of used straws and beads from waste paper.
The Little People also make juice for commercial purposes. The group holds annual conventions to socialise, learn and generate ideas for new opportunities.
The conventions are facilitated by motivational speakers and counsellors. The above interventions have boosted the self-esteem and self-perception of the Little People.
Nakyeyune’s work has attracted the attention of the Little People of America, the oldest and biggest support organisation for Little People, who are now in partnership with her.
The Americans send their Ugandan colleagues educational materials and are in the initial stages of working out a partnership with US-based specialised medical services, to sponsor medical specialists in skeletal dysplasias and to boost the capacity of Ugandan doctors to manage dwarfism patients.
Nakyeyune has encountered the medical challenges first hand. She share an experience when her daughter was about four years old.
“A doctor told me that she would need to be given human growth hormones to increase her size. But because I understood her condition, I knew that human growth hormones cannot help a person with achondroplasia and I declined the doctor’s recommendation,” she says.
What is dwarfism?
Dwarfism is a medical disorder that results in short stature. People with the condition are also known as Little People. Little People go to about 4ft, 10 inches maximum, although a few can be a little bit taller.
Most dwarfism-related conditions are genetic disorders, but the causes of some disorders are unknown.
Over 80% of occurrences of dwarfism result from a random genetic mutation in the father’s sperm or the mother’s egg rather than being in either parent’s complete genetic makeup.
Disorders causing dwarfism are often classified by proportionality. Disproportionate dwarfism describes disorders that cause unusual proportions of the body parts, while proportionate dwarfism results in a uniform stunting of the body. There are over 200 conditions that can cause dwarfism, each with its own distinct features, symptoms and causes.
However, short stature in the absence of a medical disorder is not considered dwarfism. For example Batwa and other pygmy groups like Mbuti, Baka and Aka are proportionate and smaller than average height people, but cannot be classified as dwarfs because they do not have bone dysplasias or collagen defects.
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Nakyeyune gives hope to Uganda’s little people