When Eddie Ndopu was a toddler in South Africa, he was diagnosed with spinal muscular atrophy, a disorder that affects voluntary muscle movement. So even as a kid, he had to fight for rights that people without disabilities don’t have to think twice about. Now, at the age of 32, Ndopu is on a mission to reshape how the world thinks about what it means to have a disability.
He holds a masters degree in public policy from the University of Oxford. And In 2019, he was tapped by the Secretary General of the United Nations to be an advocate for its Sustainable Development Goals, which include ensuring access to education for all. Ndopu has made it his life’s work to not only raise awareness about the issues affecting people with disabilities, but to completely reframe the way we all relate to disability—on a truly global level.
And just this month he released a memoir, Sipping Dom Pérignon Through A Straw: Reimagining Success as a Disabled Achiever. In it, he writes about how people with disabilities are often expected to achieve excellence in order to be treated with dignity.
One of the things that struck me most about my conversation with Ndopu is his radical clarity about the value of human life. His work upends established assumptions about ability and excellence, and instead argues that our deepest vulnerabilities can actually be our greatest strengths.
Tune in every Thursday, and join us as we continue to explore the minds that shape our world. You can listen to the full episode in the player above, but here are a handful of excerpts from our conversation, which have been condensed and edited for clarity.
On how living with a disability has become his greatest strength:
This may be jarring to some people, but disability has been the greatest offering and gift of my life because it has enabled me to develop an intimate relationship with my body. And the relationship that I have had to cultivate, with the recognition that I am getting weaker by the day has really enabled me to live with a sense of urgency.
And so, possibility is always on the table. The ability to live with intention and with urgency has really enabled me to accomplish my wildest dreams.
The thing that has been labeled as a deficit, as a weakness, as a source of tragedy, has actually been the foundation of an irrevocable sense of self. So I would go back and tell myself that I am enough, that I am fine just the way I am, and that that is gonna be where my superpower lies.
On what anti-ableism really means:
Ableism as a concept really refers to the ways in which we organize society, and it implicates everybody. Whether you have a disability or not, ableism basically says that there’s only one way of being: one way of being productive, one way of being valuable, one way of being beautiful, one way of being worthy.
An anti-ableist framework basically says that there are a multiplicity of lived experiences. There’s more than one way of showing up in the world, and all of that is valid.
On why dismantling narratives about accomplishment and excellence:
The honest truth is that the more barriers that I have been able to break down as a person with a disability, the more barriers have awaited me on the other side.
We don’t talk about what it means when you scale the mountain, and you think you’ve arrived at what is the summit or the peak, when in fact that’s just base camp of yet another mountain to climb.
And I felt a lot of shame in admitting that. And I couldn’t explain to people: how is it possible that success and accomplishment has not inoculated me against ableism? Like, how is that possible?
Because I believed that if I just accomplished enough, and I got all the accolades, and I did everything perfectly, that I would be able to sidestep a lot of systemic inequalities. That I would be able to emerge on the other side, and I’d be able to look people in the eye and say, if you just have enough grit, if you just have enough resilience, you can make it. And I realized that that is actually not true.
This interview has been edited and condensed for clarity.
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