People with disabilities find their voice amidst the pandemic

A mighty advocate builds coalitions to keep the Kyrgyz government accountable

The data are stark. Around the world, people with disabilities are less likely to ever attend school, much less graduate; are more likely to be unemployed and forced to eke out an income from the highly insecure informal sector; and are thus disproportionately represented among the hungry and poor. And when disasters strike—whether a hurricane, drought or pandemic—they are often invisible and neglected amidst the chaotic struggle for aid and relief.

In Senegal, however, this community has found its voice, and a sort of silver lining to the tragedy of the COVID-19 pandemic in its use of the bully pulpit to secure wins for its members that will outlast the virus.

The players in this good-news story are the Senegal team of the International Budget Partnership (IBP) and its collaborator and partner, the Federation of Associations of Persons with Disabilities (FSAPH). Their goal: collective action and citizen engagement to assure transparent and equitable government spending, improve the delivery of social services and assure that marginalized communities are included in pandemic relief.

One story: a woman with an illness or an ‘evil spirit’?

The story of Ndèye Dague Dièye, president of the FSAPH Women’s Committee, illustrates the challenges faced by persons with disabilities in Senegal—and in so many other countries.

Ndèye contracted polio when she was just a year old—the only one to be afflicted among her parents’ nine children, although the disease was spreading like wildfire in the early 1960s.

“Poliomyelitis was still unknown to most people in Senegal at that time,” she recalls. “As a result, the disease was blamed on evil spirits—and those who had it were viewed with negativity and fear.”

Fortunately, Ndèye’s father was a teacher and school principal and was familiar with the disease. He insisted on using modern medicine, rather than relying on traditional remedies, such as roots and herbs. Nevertheless, she required repeated surgeries, crippling her right leg and preventing her from running and playing with the other children. Most schools were not designed with disabilities in mind, so Ndèye was forced to laboriously climb steps to enter the classrooms and use a toilet at a nearby home, since she could not navigate the tight quarters of the building’s facilities. A sister attended with her (her other siblings went to her father’s school, which was much farther away) to help carry her books and other supplies. Still, some students ridiculed her.

“When a classmate or another student on the playground laughed and imitated the way I walked, I’d cry to my father at the end of the day,” remembers Ndèye, who today walks with the help of a cane. “He would comfort me and patiently explain that the other child just didn’t understand me. My father taught me at a very young age that I was just like any other girl, but that I must assert myself to demonstrate it. He defended my rights, but never overprotected me. This is how I learned at an early age how to cope and fight despite my disability.”

Then, when she was in the fifth grade, her father died, and she could no longer rely on him to speak up for her. Ndèye wanted to follow in his footsteps and become a teacher, quickly passing the entrance exam for the training college. She was shocked when the medical director decided three months later to exclude her anyway, due to her disability. However, with the help of one of her father’s friends, she was able to fight back and ultimately won.

That struggle to keep her teaching job was a defining experience for Ndèye, transforming her into a strong advocate for Senegal’s Social Orientation Act, which imposes a hiring quota on companies. However, the quota has not been respected by many companies, resulting in a recent peaceful protest by university graduates with disabilities.

Power in numbers

Ndèye’s activism began with the National Association of People with Motor Disabilities, where she focused on involving more women. “We succeeded in drawing in a much larger number of women, some of whom had been literally hidden by their families; others had been forced to stay at home, doing household chores. We did everything we could to get them out of their houses and involved.”

Then came the formation of FSAPH, which seeks to benefit people with any type of disability, with a particular focus on access to health care. “The members of FSAPH asked us to take on the leadership of the federation’s women’s committee, after observing our dynamism and the results we achieved,” she explains.

COVID-19: crisis multiplier

Even before COVID-19 hit, IBP and FSAPH had identified a major gap in the country’s social-protection network: Thousands of people with disabilities were missing from the national registry of poor households used by the government to determine beneficiaries of welfare services such as transportation, health care and education. Although a 2010 law guaranteed people with disabilities access to these services via an “equal opportunity card,” none had been issued since the end of 2017. The two partners set out to investigate the core challenge: Was it a budget issue? Or poor governance?

“The coronavirus has enabled a major shift in public dialogue,” notes Aminata Tooli Fall, a program officer on the IBP Senegal team. “People now are looking more at what it really means to be vulnerable. What constitutes a vulnerable group and how can we better ensure as a society that they are not left behind in an emergency?”

Traditionally, government responses are based on the National Registry for Poor Households. But the coronavirus, and the data collected via FSAPH, exposed the fact that a lot of households in need are not included on that list. “We must figure out how we can make sure the system is better organized so that if anything happens, not just a pandemic, the most impacted people are taken care of first,” Aminata adds.

People with disabilities typically work in the informal sector—selling goods on the street, for example. Some survive by panhandling. That all came to a halt when the government restricted movement in response to the pandemic, forcing most people to stay at home. The result: no income. And without an equal opportunity card, people with disabilities couldn’t even access basic services.

FSAPH rapidly mobilized, creating a monitoring-and-reporting committee with volunteers participating in coronavirus response at each level of government, allowing the organization to act as both collaborator and watchdog. That grassroots-driven process allowed FSAPH to collect a trove of information on the number of people with disabilities initially targeted by the various programs, the number who did not receive assistance, the gender balance among the recipients, and more. When instances of neglect are identified, written letters are immediately sent to the appropriate ministry, holding them to account. If the problem persists and authorities are unresponsive, the FSAPH Monitoring Committee convenes a press conference to bring the lapse to public attention.

For example, a May 21 news conference that called out gaps in public service was organized with the assistance of another IBP partner, ONG3D, which has extensive experience in mass media.

The media coverage was significant and the government response swift.

“The day after the press conference, the government acted,” recalls Maleine Niang, Country Manager for Senegal. “A spokesperson from the Ministry of Community Development and Social and Territorial Equity, which is in charge of the COVID response, said on TV that he would make sure that an additional 55 000 people with disabilities who had not received equal opportunity cards would get them and be included in the emergency response.”

Seeking to integrate women with disabilities into other government programs as well, Ndèye wrote to the Ministry of Women’s Affairs, arguing that her constituents were “women, first and foremost” and thus deserved attention. The advocacy was successful; when the minister launched a campaign to promote the use of face masks, Ndèye was tapped to participate.

“It was the support of IBP that gave us access to the budget information we needed to know and the officials we needed to influence,” she notes. “Without that, we likely would have been neglected. Knowing how to secure access to decision-making institutions is essential.”

Those victories positioned FSAPH to go on to earn the support of donors such as the embassy of Great Britain in Senegal, which is funding its project to promote economic resilience among women with disabilities by buying masks and soap made by members and distributing them to others who need them. Ndèye says she wants to build on this success by encouraging women with disabilities to create businesses and then helping to build a market for their products.

Prepping for the long haul

Going beyond those initial wins will require sustained engagement with a broader range of actors. This requires a deep knowledge of the social attitudes and constructs that shape behavior toward people with disabilities. To that end, IBP and FSAPH launched a study of norms and public discourse to further explore how people with disabilities perceive themselves and are seen at the community and institutional levels.

That’s the unique value of IBP as a partner, notes Ndèye. In addition to its technical expertise, IBP focuses on the development of local leaders, helping them propel their movements and associations forward.

“I strongly believe this is the best approach for international organizations, to work in partnership with local groups,” she says. “As people with disabilities, we are masters of every parameter related to our environment. We know what we want and need. On the other hand, IBP has in-depth knowledge of monitoring, evaluation and budget analysis. IBP enables us to expand and amplify our work. Access to decision-making institutions is essential for women with disabilities, particularly the next generation. With this skill, we can carry out our own advocacy. That’s the kind of partner we want.”