Living with Down’s syndrome in Kinshasa, DRC
August 15, 2016
Kinshasa, Democratic Republic of Congo – In a suburb of Kinshasa, a tightknit community gathers for lunch in a backyard. It is one of the few spaces in the city where its members go unnoticed and their families enjoy a short reprieve from daily discrimination.
Traditionally believed to be evil spirits, people living with Down’s syndrome are excluded from Congolese society, taunted by their peers.
“We are in Africa. We have beliefs – mystical and religious – that go against what science tells us,” says Dr Gerrye Mubungu, a geneticist in Kinshasa.
“We say that if someone is born with a disability, it is either witchcraft or a spiritual issue that’s the root of the problem.”
Educating the public about Down’s syndrome is a priority for activists such as Aimee Luzayadio, the founder of Jean V Espoir et Compassion (Jesco), the first association in DRC dedicated to supporting people with Down’s syndrome and their families.
“For Jesco, it’s very important to explain that it’s not the parents’ fault, it’s not the child’s fault – it’s just an extra chromosome,” she says.
“The biggest difficulty is to get these people out of isolation and change society.”
Now, individuals with Down’s syndrome and their supporters – family, doctors, and activists – are pushing for a shift in how they are seen in the country.
Dressed in bright colours, Solange Mampia smiles as she tells the story of raising her daughter, Elvine Misiombo. Her positivity hides the discrimination she and 22-year-old Elvine have faced.
“When I was in the hospital, nobody [from my family] came to visit,” she tells Al Jazeera. “It still breaks my heart.”
Convinced that Solange couldn’t have healthy babies, Elvine’s father left her to raise their two daughters alone.
“[Elvine’s birth] is the reason we divorced,” Solange explains. “According to her father, she is useless so she had to be abandoned.”
Dr Claude Kayembe, another genetics specialist, says that many couples separate after the birth of a disabled child and the mothers are often blamed for the condition.
“Even if the literature says an older mother is at fault, a man can also cause [Down’s syndrome],” he explains. “In information campaigns, we have to make sure that we don’t say that it is only the woman who is the cause since men are also responsible.”
As the condition is misunderstood, raising a child with Down’s syndrome in Kinshasa is an uphill battle. From curious onlookers to bullies who call Elvine a “witch” and “cursed”, and throw stones at her, it is hard to live a normal, anonymous life.
“Wherever we pass, people look at her and ask what kind of person she is,” explains Solange.
Elvine keeps busy at a special education school where she has learned how to sew and make dolls.
“I like fashion,” says Elvine. “I choose what I wear and my favourite outfit is a dress with a belt.”
She also helps her mother at her stall in the market. When Solange has small errands to run, she can leave Elvine alone to manage it.
“If there is a client who comes, the other vendors are next to her, but she knows the prices – as long as the exchanges are small,” says Solange.
While some customers might try to cheat her daughter, Solange isn’t too worried.
“She has a strong character and will get angry,” she laughs.
“I like to sell at the market,” adds Elvine.
Solange credits prayer with strengthening her resolve to empower her daughter and ensure her independence.
“It’s a heavy burden I have to bear until the end. When I will no longer be alive, she will know how to take care of herself. This is the most important [thing].”
Overcoming medical problems
While life expectancy in the Democratic Republic of Congo (DRC) is 60 years, local physicians agree that many Down’s syndrome patients die before their second birthday owing to heart problems. At 45, Blaise Kanza is an anomaly.
“He is healthy, but he has headaches and stomach problems. With the little [income] that we have, we are usually able to afford his medication,” says Raymond Mafuala, Blaise’s brother.
“But we prefer to die of hunger [if necessary] to protect his health.”
Before attending one of Jesco’s information sessions, Blaise’s family didn’t know that he had Down’s syndrome.
“Since his birth, there have been clues,” explains Raymond. “We were worried, but we didn’t know where we could go to for an explanation.”
Diagnosing Down’s syndrome costs about $500 in Kinshasa and DNA tests are processed in Belgium because of a lack of equipment in Kinshasa. Such examinations are expensive for most Congolese families, who earned a yearly average income of $410 in 2015.
“Exams cost a minimum of $500 and if you include educational and other medical support, I can’t see how a parent with a Congolese income would be able to pay for this,” says Dr Kayembe.
Blaise hasn’t let his late diagnosis interfere with his development. He enjoys drawing – earning him the nickname “the artist” at home. His family hopes he will continue to excel in art.
“The entire house is happy when my brother succeeds,” says Raymond, glancing over at Blaise.
The 45-year-old is also an avid football fan and plays the sport with his brother, who coaches a local team.
“My brother is my coach,” says Blaise in Lingala, a national language. “My favourite team is Simba [from Kinshasa] and my favourite player is Cristiano Ronaldo.”
However, his love for the game has to be kept within the confines of his neighbourhood. The brothers once attended a match, but the crowd became hostile towards Blaise so they had to leave.
“Considering the lack of security at the stadium, we are afraid to bring him there,” Raymond explains.
When they are seated side by side, one can see that Thierry and Mami Mayamona are siblings. They grew up together in Kinshasa but Mami wasn’t accepted by everyone in the community.
“Living with someone with a disability isn’t easy,” says Thierry about his experience growing up with his sister. “The term Down’s syndrome – we haven’t used these words for long. At the time, they were called Mongols.”
Mami’s father was her biggest advocate. Unlike many people living with Down’s syndrome in DRC, Mami attended a mainstream primary school where she learned basic literacy skills.
“I like to read, draw, and write,” says Mami in a mixture of French and Lingala.
She has also taught herself how to sew, a pastime that has grown into a passion.
“I use a [sewing] machine and take [people’s] measurements,” explains the 35-year-old.
After their father’s death, Thierry became her guardian. Mami discontinued her formal education due to the family’s difficult financial situation.
“My father had integrity,” Thierry says. “He supported [Mami] so that she could be prepared to overcome everything that could be thrown at her, including insults and bad names.”
Determined to help Mami find her place in society, Thierry became the general secretary at Jesco. He hopes his sister will achieve her long-term goals.
“I would like to see my sister become a seamstress or manage a shop, doing what she sees as a priority in her life,” he says.
Pushing for change
At first, Marie Ampioje hesitates to speak about her youngest child, Djames Elonza, who hides behind his mother’s chair. Grabbing her purse, she brandishes a photo of her son as an infant, taken after he was diagnosed with Down’s syndrome and her words begin flowing.
“I am happy every moment I am with [Djames],” she says. “He is the child that is most attached to me.”
Djames plays a central role in his family, which includes his father. Ampioje and her husband have stayed together, raising Djames with their other six children.
“When I was at the hospital with my husband, we were given information [about Down’s syndrome] and he took responsibility,” she explains.
Despite a supportive family, growing up in Kinshasa isn’t easy for Djames. The 11-year-old plays with friends in his community, but he is still taunted for being different.
“In the neighbourhood, everyone knows him. But if someone mocks him, I go and speak to [the person] and I explain why this child is different,” she says.
Accepting Djames was an emotional journey for Marie, who is proactive in advocating for her son’s rights.
“As soon as I understood, I accepted my child. So I ask other parents to try to understand, to love their child, and to help [their children] integrate into society,” she tells Al Jazeera.
Teaming up with parents such as Marie, Jesco is also lobbying the government to bring about policy change.
“Our goal is to raise awareness about Down’s syndrome to attract our leaders’ attention so that they find a solution for these people,” says founder Aimee Luzayadio.
“My priority is that they can find a place in Congolese society. These individuals aren’t ‘Mongols’ – they are Congolese.”
Kait Bolongaro is a 2016 fellow with the International Women’s Media Foundation’s Africa Great Lakes Reporting Initiative.
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