Eddie Ndopu was born in Namibia in 1990, the same year Namibia was born. His single mother had fled apartheid South Africa and gone into self-imposed exile. When he was two years old, doctors diagnosed him with spinal muscular atrophy and told his mother that he wouldn’t live past the age of five.
At nine, he and his mother moved to Cape Town, where he spent his formative years. After school, he took art classes, sketched incessantly, and dreamed of becoming a fashion designer. He was about to submit an application to New York’s Parsons School of Design when he got into Johannesburg’s prestigious African Leadership Academy, where the mission is to develop leaders who can transform Africa.
Meantime, due to his degenerative condition, his muscles had weakened. Deep down, he knew he couldn’t keep drawing—his hands weren’t strong enough. So he started down a different path.
Today, he’s the head of Amnesty International’s youth activism program in Africa. His job is to engage and mobilize young activists to pressure lawmakers around the world to strengthen human rights across Africa—and to provide better educational opportunities to children with disabilities.
During his second year on scholarship at Canada’s Carleton University (he would eventually graduate summa cum laude), Ndopu was a research analyst at the World Economic Forum and led a campaign for the educational rights of children with disabilities. As a result, South Africa’s Mail & Guardian named him among the top 200 young South Africans.
When Amnesty International offered him his current job, he said, “they were looking for someone who would inspire young people throughout Africa to take injustice personally.”
“Injustice makes me angry,” says Ndopu, who is also black and gay. “And I think anger, when properly channeled, can set on fire the things that need to be set on fire. I want to set ableism, sexism, queerphobia, and racism on fire and let them burn to the ground.”
The biggest issue for him is that “disabled people, across borders, identities, cultural contexts, and socioeconomic brackets, experience overwhelming and systematic neglect, trauma, and isolation,” he says.
Ndopu uses a wheelchair, has a full-time personal attendant, constantly experiences inaccessibility, and explains that for disabled adults, what everyone else calls “adulthood” is elusive, “because we are infantilized and institutionalized. Disabled people, like children, share long but distinct histories of being silenced and dominated by people with whom our care is entrusted.”
According to Ndopu, while disabled people around the world have better access to the built environment than ever before, they still don’t have access to what he calls the everyday sphere: “As a disabled twenty-something, I need access to life beyond the instrumental logic of accessibility. I also need access to intimacy, fun, community, self-actualization, self-determination, and so much more. This is where my activism and research interests primarily lie.”
We’ll be publishing profiles of this year’s list of the 30 top thinkers under 30 throughout the month of March. Visit this page every day to read about another young person who is making an impact on the social, political, and economic issues we cover every day at Pacific Standard.
Before he died in 2013, Pius Langa, who had been appointed by Nelson Mandela to be the chief justice of the Constitutional Court of South Africa, was Ndopu’s mentor. One day, he told Ndopu: “You are the project.” Ndopu hears the echo of this simple sentence as he pursues his work, which he says revolves around this question: “How does one carve out space for oneself in a world not yet ready for, or indeed, a world opposed to one’s existence?”
When asked what motivates him, Ndopu says: “The first thing, I guess, is the deep recognition that I am dying. My degenerative condition has actually brought so much joy to my life. I feel free and powerful. It’s really difficult to articulate because most people don’t understand the emancipatory dimension associated with terminal illness. To use my life in service of a vision grander and more daring than I have ever known is the greatest gift. It’s painful but also incredibly beautiful.”
He adds that imagination is the other vital thing that that drives him. As far as Ndopu is concerned, activism is the work of imagination. “Our job as human beings who seek change through resistance,” he says, “is to use our imagination in service of constructing another world, to think and dream ourselves out of the current world order. To fledgling activists I say: ‘Dwell in the grace and splendor of your imagination.'”
As for what Ndopu imagines for his own future, he plans to go to graduate school. He wants to make a documentary that explores how disabled life can be fun and meaningful in the world’s major cities. He wants to host a talk show. And to set up a foundation to support people with disabilities around the world. “Whatever I manage to achieve over and above all this,” he says, “would simply be the cherry on top of an otherwise perfect and scrumptious cake.”
In his time off, Ndopu likes to dine at fancy restaurants and drink fine wine with “interesting and fabulous people.” He still follows the world of haute couture and has been known to binge-watch fashion shows on YouTube.
Of all Ndopu’s accomplishments, his favorite is having been invited, at the age of 20, to give a Master’s Tea at Yale University. He remains one of the youngest speakers ever to have given a Master’s Tea, and it felt like the culmination of years of struggle “I mean, there I was, dressed to the nines, delivering a keynote address about a campaign I started a year earlier to pressure policymakers to open up educational opportunities for children living with disabilities across Africa. My road to inclusive education had been paved with rejection and resilience. But there I was, a symbol of possibility. To this day, the hair on my arms stands up every time my mind flashes back to the standing ovation I received. That was my proudest moment.”
His most miraculous achievement, though, is having lived past the age of five. “Outliving my prognosis,” he says, “meant learning early on how to survive in a world ill-equipped and sometimes just unwilling to recognize disability for what it is: an offering to humanity.”
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