Getting to the Table: Disability, Inequality and the Pandemic
On March 11, 2020, the World Health Organization declared COVID-19 as a pandemic. It changed all lives – but not equally. For persons with disabilities, protecting ourselves is far harder due to systemic barriers. To keep everyone safe in the post-COVID world, we must be at the table where important issues are discussed, and decisions made.
Wash your hands, keep 1.5m apart, stay at home. These mantras were repeated by leading figures across TV, radio and social media. However, for 1 in 7 people living with disability globally, they are almost impossible to follow.
On March 14, a positive case was detected in Ruanda. It took root and spread. For Singstar Ali, a blind musician, the outbreak was particularly concerning for us, persons with disabilities, who often were not informed on the epidemic and preventative measures. In his Coronavirus fight song, produced with a grant from Disability Rights Fund (DRF), Ali summed up the challenges faced by all persons with disabilities to protect ourselves:
The issues described by Ali are systemic, universal, seemingly insurmountable, and well known. The pandemic exacerbated them even further as emergency response mechanisms left us behind. It raises questions such as: Who decided the height of a tap, who epidemiologists have in mind when they run prediction models, and how to make communications accessible for all people? These things mark our absence from discussions.
“It is no longer acceptable to not have women at the table. It is no longer acceptable to not have people of color at the table. But no one thinks to see if the table is accessible” Judy Heumann, a disability rights advocate, wrote in the roadmap to inclusion published by the Ford Foundation. The lack of presence by persons with disability at the table is immense. But change is coming.
Inequality is intrinsic, even among persons with disabilities
At the forefront of change are organizations such as the Disability Rights Fund (DRF) and its sister organization the Disability Rights Advocacy Fund (DRAF) – the only global funders focused exclusively on disability rights. These philanthropic actors center the leadership of persons with disabilities and enable advocacy by persons with disabilities in the Global South to address inequality and achieve rights and inclusion. In a statement, DRF’s Director of Development Jen Bokoff said that “international disability rights advocacy must focus on getting on the human rights agenda. It is about getting to the table, becoming visible in places where persons with disabilities had been invisible, and participating in policy development”.
Yet, inequality is intrinsic, even among persons with disabilities. Women with disability, those with diverse sexual orientations and other minorities still face multiple layers of marginalization, even within the disability rights movement.
In African countries, discussion circles provide a space for women with disabilities to share their stories and support each other.
One of the projects funded through the DRF is the Nigerian-based Advocacy for Women with Disabilities Initiative (AWWDI). Its executive director, Patience Ogolo-Dickson is a woman who identifies as having mobility disability and uses a wheelchair. “In our discussion circles, women with disability in Nigeria share stories of overcoming our families’ perception to do what we want, such as getting married or pursuing happiness”. Interestingly, our shared desire seems simple enough. “When we go to a hospital and our needs are accommodated, we’ll leave feeling satisfied. That’s what I want to experience”.
The marginalisation of the most vulnerable can only be addressed by looking at the intersections of gender, sexuality, race, ethnicity, and disability and acknowledging the specific needs of each member of the community. Theophilus Odaudu, who is DRF's Program Officer for Nigeria and who identifies as a blind person says: “What we’ve done is to support projects for each type of disability to have someone working with that community to tailor the information and strategy for their particular disability group”. Sustained advocacy does open up a more inclusive space. In Nigeria, sign language interpretation is now a standard in COVID briefings. It is concrete changes like this that pave the way to the table for persons with disabilities.
“People with disability should do their own reporting to move the needle on critical issues.”
As part of their advocacy, DRF has also collaborated with the US-based Disability Justice Project, where leadership and participation plays a key role in the project’s strategy. “People with disability should do their own reporting to move the needle on critical issues” founding Executive Director and journalist Jody Santos says. The organization currently delivers virtual training to 5 fellows in 4 African countries to give them the storytelling techniques to speak out. “I can tell a story about someone with a disability and the ways in which they have been denied the services during the pandemic. But without putting it in a larger context, what it tends to do is inspire otherness. By making our own voices heard and telling our stories, we show that this is a worldwide problem that implicates all of us and deserves our attention – and action”.
The pandemic has exposed intrinsic inequalities, not least for persons with disabilities. But we’ve made a lot of progress under these challenging circumstances. For the disability rights movement to be successful, we must include leadership by the people who are at the movement’s margins. By getting persons with disabilities, including women, those with diverse sexual orientations and other minorities to discussion tables, we can build a more just, inclusive, and accessible post-COVID world. Let us start now.