Congo’s invisible, third-class citizens find solidarity

Bukavu, Democratic Republic of Congo—There’s a darkish room, maybe 12 feet by 13 feet, tucked into the back area of the ground floor of a school called Lycée Wima. Seated along walls of peeling paint are more than a dozen women sewing patterned bags, shoes, dresses, and dolls on elegant Singer sewing machines from the time between the last world wars. The work is exacting.

We are in the capital of the South Kivu province of the Democratic Republic of Congo, Bukavu, and these women have made a slow and painful walk this morning to get here as they do every morning. In the rain, one woman says, they fall in the city’s muddy, pitted streets. A few use metal crutches that cost $90 to help them; others have cheaply made, heavy wood ones. Only one or two have the kind that wrap around their forearms to make walking even easier. This is a collective of about 20 disabled women and two men who have come together to try to support themselves with sewing, but they’re finding it hard to sell their work, being so out of view in the back of the school. Money isn’t the only reason they come though, says Josianne Mutjima, 57, who has five children. It’s also a way to de-stress.

“When you stay at home, you’re useless and everyone laughs at you and disrespects you,” Mutjima says. “When you get up in the morning to go to work, everyone respects you, even your neighbors. We come here and we can forget our problems.”

And their problems are many. The head of this group, the Association d’Encadrement pour la Promotion Integrale des femmes vivant Handicap (AEPIFHA), Fariala Mangaza, 48, was disabled by polio when she was 6 and says she has a metal bar in each leg from hip to foot. She talks about how they all suffer as disabled women in Congo, with everything from the lack of physical access to buildings to being kept out of school as children to being more vulnerable to rape and violence in general. A number of women in the room were survivors of sexualized violence but chose not to speak about their attacks.

Mangaza says she knows of at least one woman who was raped while left home alone, and another woman, paralyzed, who is being treated at nearby Panzi Hospital for pregnancy from rape. Women with disabilities are even discriminated against as they are giving birth in hospitals, a 2015 study from international NGO Handicap International found. Many told the group that they were only given attention while in labor after able-bodied women and faced lectures about how they shouldn’t be having a baby in “their condition.”

The women gathered in Bukavu are mainly disabled from having been ill with polio or meningitis as children so they have been adapting to their impairment most of their lives. (Women injured this way make up the majority of those disabled in Congo, experts say—not people injured in conflict, as might be assumed.) But much of the impairment these women have faced is external: They are a kind of invisible third class, lower than men who are disabled, lower than able-bodied women. As in much of the world, disabled women in DRC suffer what’s known as “double discrimination.” A woman with a physical impairment is twice disadvantaged in places where women live at a different status level than men. Overall, one estimate puts the number of disabled men and women in the country at 9.1 million, according to a 2012 quote in various articles by Patrick Pindu, coordinator of the National Federation of Associations of People Living with a Disability in Congo. (Where Pindu got that stat is hard to discern, however. The country hasn’t had an official census since the 1980s.) The World Health Organization puts the number of disabled at 4.2 million as of 2002 out of a population of 60 million. (And the CIA World Factbook puts the current total population of DRC at 79 million.)

That room the women of AEPIFHA work in, “that’s a very good illustration of disabled women here,” says Catherine Stubb, the Kinshasa-based director of program for Handicap International. It is hidden away and not seen, just like the women themselves.

As children, all were either kept from school completely or given just a few years. School fees are costly to poor families here, and parents send their able-bodied children first. They’re the ones who can later work and provide for the family. So the girls sat at home as children to “secure the house,” vulnerable to men who came in during the day, says Mutjima, who went to school through grade 6, an unusually long time for this group. Without schooling and with an obvious physical disadvantage, these women are less likely to marry, although a number of those in the room say that they are. Solange Mushengezi, 39, had her legs ruined from childhood meningitis; she was never sent to school. Now married now and with six children, she admits it wasn’t easy to find a husband, something Congolese society generally expects of every woman.

“Even if you find a man who loves you,” Mushengezi says, “when he talks to his parents, they ask, ‘How can you love her? She’ll never be able to carry water for you.’”

Mangaza, who has a huge, gap-toothed smile and is known as Mama Leki, says she helped start the group three years ago because “we decided we’ve been disrespected too much.” Married now and with five children, she laughs when I ask if it was hard for her to find a husband. Yes, the man she hoped to marry had trouble with his family over her being disabled when they met. But, she adds with eloquence, “Love doesn’t have eyes.” Now, she says, with their oldest son 20 years old, she is “10 out of 10” with her family-in-law.

“They now understand that a disabled woman is like any other woman,” says Mangaza.

Part of what the women do each weekday at the school besides sew is talk about how they can protect themselves—from HIV, from violence. They talk about solutions to their cascading problems and wonder how they can find resources to better their lives. Poverty multiplies every health difficulty in Congo. In an illustration of how money affects their bodies directly, the women line up the different kinds of crutches in a demonstration of best to worst. The women at AEPIFHA who can’t afford proper crutches and have to walk everywhere are putting great stress on their bodies without relief from physiotherapy, says Stubb. Such struggle “can worsen the body year after year,” she says.

For every 10,000 disabled people in DRC, the number of physiotherapists is at less than 1 percent, according to a 2011 World Bank report. The report also lists the years of health lost to disability in the country at 13.6, tied with Chad as the eighth highest country on the list. (For comparison, in Iraq, those with disabilities lose 19.4 years (the highest number) and in the U.S., 7.9—which isn’t the lowest. That number is in Japan, at 5.5 years.) But even if there were more therapists available, these women couldn’t afford regular treatment. Each month, the group makes about $300, which they split among them. Some months are lighter than that.

Yet it is their kind of solidarity that makes life conceivable in emergencies, says Stubb. If something like a hospital stay for a child isn’t already planned for in their budget, “it’s not possible,” she says. But putting together what she calls a “common wallet” allows the women to make life livable when the unexpected happens. School fees—and all the women are laser-focused on giving their children an education—are expensive for them, at $10 a month for primary school, and $150 a year for secondary school.

“If they don’t study,” asks Mangaza, “who will they become tomorrow? Street boys.”

Congo is a place without government assistance for those who need it. No health insurance, no government help for the poor, who compose most of the country. When it comes to disability rights, though, there has been a recent step forward. At the end of September 2015, the government signed on to the 2008 UN Convention on the Rights of Persons with Disabilities, which is “intended to promote, protect and ensure the dignity, equality under the law, human rights, and fundamental freedoms of persons with disabilities.” Still, this is a place where laws may exist on the books but go unenforced. It remains to be seen whether this will have any real-world consequences for women like those in Bukavu.

In the meantime, the women of AEPIFHA work and support each other every day. Most in the room say they dream of being able to go to school now—to learn English and study French. Mangaza and the others all clap and laugh imagining themselves in such a school, but say there is no such opportunity available. Instead, they will sew, and make the difficult walk to and from the small, dark room at the back of the school five days a week. They will sit and work and laugh and chat and then go home at night, and then do it all over again the next day.