“Whenever you find yourself in a situation that is prone to misconception, which in most cases breeds stigma, seek to know as much as possible about that situation. It is only until you overcome ignorance, stigma, shame and denial, then can you be able to fight for the rights of others in similar situation”.
– Annet Nakyeyune Tibaleka, Founder
At the age of 24 years, absent on Annet Nakyeyune, an environmental socio-economist’s mind was learning about dwarfism, a rare medical condition and advocating for the rights of little people. But when she gave birth to her daughter Love Annmarie, who is a dwarf, her focus changed. She says that giving birth to a child who does not measure up to what society accepts as “normal” is a daunting experience; a parent may feel very isolated. Also raising a child who is so different from everybody else presents with it a lot of medical and social challenges among others. With dwarfism, there was information deficiency about what it actually is, its causes, challenges and medical complications associated with it among other things. Because of this deficiency, dwarfism is associated with misconceptions and stereotypes that in a bigger part contribute to stigma and discrimination.
Much as Annet loved her daughter and looked at her as a perfect baby, society’s attitude was very different as evidenced by the derogatory names and descriptions that people including close family members and friends used in reference to her daughter. They associated her with mental, spinal and other personality disorders and majority dismissed her as only destined for circus and entertainment. Some family members would openly shy away from being associated as Annmarie’s relatives. To Annet’s surprise, even some doctors were equally insensitive not to mention their inexperience with skeletal dysplasia. One day Annet took Annmarie to a doctor and while he (the doctor) referred to other people’s children as babies, he referred to Annmarie as an “extraordinary creature”. These insensitive utterances and attitudes depressed Annet – wondering how her daughter would cope in this kind of insensitive and discriminating society. She realized she needed to do something to change these attitudes and fight for her daughter’s rights and equality in society. With this resolve, she began educating herself about dwarfism in general and achondroplasia (Annmarie’s condition) in particular. She says, “whenever you find yourself in a situation that is prone to misconception, which in most cases breeds stigma, seek to know as much as possible about that situation. It is only until you overcome ignorance, stigma, shame and denial, then can you be able to fight for the rights of others in similar situation”. Through internet search, she met Fred Short, a retired teacher in England who is himself a dwarf. Fred volunteered a lot of information related to dwarfism, which helped Annet to further distinguish facts from myths. This helped her to come to terms with the reality of her daughter’s condition.
While she was going through the experience of raising Annmarie, she thought about parents in similar situation and how they cope. She started visiting them and she was not surprised to find that majority were ignorant about their children’s condition and lived in denial and despair. Many parents were single mothers because their men had denied paternity of the children affected with dwarfism. The same applied to the adults affected with dwarfism whom she met. She also wanted her daughter to grow up knowing that she is not alone, that there are other people like her. She yearned to find an accomplished little person who could be her daughter’s role model. Unfortunately, she was unable to find one in Uganda as majority and “famous” ones were involved in entertainment and circus and she wanted more for her daughter. This made her realize that she needed also to influence the external environment – society, on especially how it should respond to her daughter and people like her. This is what led her to think of starting a support organization to advocate for the rights of her daughter and all people like her, now called the Little People of Uganda. Many thanks to Fred for his help in shaping up this association.