KAMPALA, UGANDA – Annet Nakyeyune gave birth to her daughter nine years ago when she was 24, just after she graduated from university.
A few months later, the baby’s father abandoned her, and her family and friends shunned her. They accused her of using family planning, being involved in prostitution or witchcraft and being the subject of a bad family omen – all because her baby was not like the rest of her family.
At 2 months old, her baby, Love Annemarie, was diagnosed with achondroplasia, the most common form of dwarfism. But despite medical opinion that Love Annemarie and her mother had nothing to be ashamed of or blamed for, their family all but abandoned them.
“My father supported me, but almost everyone else rejected my daughter,” Nakyeyune says.
Nakyeyune, who is from Kampala, says that people stopped calling her by her first name and began calling her “mother of the dwarf” or other derogatory terms. Members of the community called her daughter “strange.” She says at first she was in denial, which then turned to anger at God and the world. She kept asking God why he had let this happen to her.
“It is a hard time realizing that your child won’t change,” she says. “I later came to accept her.”
But Nakyeyune says it has been a process. Love Annemarie is the first little person in the lineage of her family.
“It was a challenge getting people to accept her,” Nakyeyune says.
But then she started reading about dwarfism and shared the information with her family members in the hope that they would begin to accept her daughter, she says.
Because of a lack of awareness about the condition and causes of dwarfism, acceptance of little people in Uganda is low. Little people say discrimination deters them from attaining an education and employment because of the false notion that little people are mentally challenged or can succeed only in the entertainment industry. But the government is beginning to study the barriers facing little people in society, and advocacy groups strive to create opportunities and awareness in Uganda.
Dwarfs, commonly referred to as little people in much of the world, are people of short stature who are less than 4 feet 10 inches tall as an adult, according to the National Institute of Health. Of the more than 200 conditions that can cause dwarfism, the most common type is achondroplasia, which causes 70 percent of cases and affects about one in 25,000 people. Achondroplasia makes people’s arms and legs shorter than their heads or trunks, but does not affect intelligence or lifespan. Most cases are caused by spontaneous gene defects, meaning parents of most dwarfs are average height, like Nakyeyune and Love Annemarie's father.
There are about 5,000 dwarfs in Uganda, according to Little People of Uganda, LPU, a support organization started by Nakyeyune for little people and their parents. Official government data has not yet been collected.
According to LPU, the biggest challenges for dwarfs in Uganda are a lack of acceptance, medical expertise and information.
Nakyeyune says this reality hit hard when her brother-in-law made a snide comment about beautiful women giving birth to “problem” children while she was visiting her sister with Love Annemarie. She says the comment hurt her, and she did not visit her sister again.
But she says that she became inspired to change the way Ugandans perceive dwarfs when she realized that even medical professionals here misunderstood little people. Concerned about Love Annemarie’s growth when she was 2 months old, Nakyeyune took her to the hospital.
“I took her to a neurologist, and he said, ‘Don’t worry, these people are always employed in the circus,’” she says.
After the hospital visit, Nakyeyune wondered whether this would be the best thing for her daughter. She says she was worried and depressed. On taking a closer look at Ugandan society, she says she realized that the famous little people were only in entertainment, mostly acting as clowns. But she says that in her heart, she wanted more for her daughter.
Nakyeyune says conversations with adult little people revealed that they feel rejected because of people’s perceptions that they might have a personality disorder. In addition, they are marginalized even within the wider disability community. Little people in Uganda say that while people may sympathize with people who have other disabilities, they laugh at dwarfs.
“They need affirmative action and to create awareness among communities, especially people with disabilities, to stop marginalizing and discriminating against them,” says Herbert Baryayebwa, commissioner of the Department of Disability and Elderly under the Ministry of Gender, Labor and Social Development.
And they aren’t just laughed at. They are also discriminated against when it comes to educational and career opportunities.
Nakyeyune says that when she tried to enroll Love Annemarie in nursery school, two schools turned her down, recommending she enroll her in a special needs school. She says she insisted on a mainstream education because her daughter was not mentally challenged. Her daughter was finally accepted in school and performs well.
Joshua Musana, a little person, says that barriers continue at every educational level. Musana says that the building facilities at his university were not equipped for people like him.
“At university, accessing the lecture rooms was difficult because they had stairs,” Musana says. “Even borrowing books in the library was difficult. Most little people find it hard to use the toilets, as they are too high.”
Nakyeyune says she also faced opposition from her family. They discouraged her from spending money on educating Love Annemarie.
“When it comes to education, parents are reluctant to spend money on little people,” Nakyeyune says.
Nakyeyune says she maintains that education is an important tool to give her daughter more choices.
“I will be gratified if my daughter has a master’s degree,” she says.
Beyond education, Musana says the next challenge is employment.
“When a little person goes looking for a job, they don’t get considered,” says Musana, who now works for LPU.
The government of Uganda is beginning to study the challenges little people face in society, Baryayebwa says. The current National Policy on Disability doesn’t include little people, but the revised policy will design ways to cater to their needs after the government collects more information, he says.
Organizations like LPU are scarce in Uganda. Nakyeyune says she started LPU to raise society’s awareness about the condition of dwarfism so that her daughter would grow up in a better world. Three years after Love Annemarie was born, Nakyeyune used her own money to start LPU. In 2007, she started informal meetings in her house with parents and caregivers of little people.
“The stigma and discrimination associated with raising my daughter was a driving force,” she says. “If I am educated and empowered enough, and still feel the pinch of misinformation, what about parents with no information? I wondered how they were coping.”
With 137 members from around the country, LPU strives for equality in education, social status and employment opportunities for little people and to create a public awareness and understanding about dwarfism. It also aims to support the caregivers of little people, as Nakyeyune says that in most cases little people are sent away to live with grandparents or kept hidden in the house.
“There a number of educated people who also hide dwarf children and are not keen on joining the organization,” she says. “We want to reach out to everyone.”
Nakyeyune says that her family now accepts Love Annemarie. She credits her own inner strength for driving her mission to create a better life for Love Annemarie and other little people through LPU.
“My daughter’s condition has taught me to believe me in myself,” she says. “Whether the world shuts the doors to my daughter, I will always be there for her.”
