Edward Ndopu, UN SDG Advocate for Accessibility and Inclusion
Humanitarian Edward Ndopu joined Catalyze co-hosts Sarah O’Carroll and Elias Guedira ’26 during his visit to the Morehead-Cain Foundation this spring. Ndopu represents accessibility and inclusion as one of the 17 official UN Advocates for the Sustainable Development Goals.
Ndopu shares about his experiences becoming the first disabled Black man to receive a master’s degree from Oxford University, his career in activism for intersectional disability justice, and advice for leaders in higher education to envision “radical inclusion” on college campuses.
Ndopu also previews his upcoming memoir, Drinking Dom Perignon Through a Straw, and talks about what it would be like to be the first disabled person to travel to space.
Edward delivered a Food for Thought talk on January 27 to an audience of Morehead-Cain Scholars and students at UNC–Chapel Hill. The breakfast and conversation series is held on Fridays at the Foundation this semester. Learn more and RSVP for upcoming events on the Morehead-Cain Network.
Music credits
The intro music is by Scott Hallyburton ’22, guitarist of the band South of the Soul.
How to listen
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The Catalyze podcast is a series by the Morehead-Cain Foundation, home of the first merit scholarship program in the United States and located at the University of North Carolina at Chapel Hill. The show is directed and produced by Sarah O’Carroll, Content Manager for Morehead-Cain.
You can let us know what you thought of the episode by finding us on Facebook, Twitter, LinkedIn, or Instagram at @moreheadcain or you can email us at communications@moreheadcain.org.
Episode transcription
(Elias)
Welcome to Catalyze. I’m your host, Elias Guedira, from the class of 2026.
(Sarah)
And I’m Sarah O’Carroll, the content manager for Morehead-Cain.
(Elias)
Joining us today is Eddie Ndopu, one of the 17 official UN Advocates for the Sustainable Development Goals. With a focus on accessibility and inclusion, Mr. Ndopu works at the intersection of sustainability, disability, race, and social justice.
(Sarah)
Eddie serves as a special advisor to RTW Investments, an investment firm with the mission of biotech and medical innovation. In addition, Eddie has advised prominent organizations, including the World Economic Forum, UN Women, and Amnesty International.
(Elias)
We had the privilege of listening to Eddie at the Food for Thought breakfast this morning, hosted at the Morehead-Cain Foundation. Thank you for joining the pod today, Mr. Ndopu.
(Edward)
Of course. Thank you for having me. I’m absolutely delighted.
(Elias)
How are you enjoying your time in Chapel Hill so far?
(Edward)
I love it. It’s a glorious day. It’s sunny, and the conversations that I’ve had so far have been incredibly robust. Great questions. It’s an incredible community, and I’m so thrilled to be here.
(Sarah)
And, Eddie, you said this was your first time in North Carolina. Is that right?
(Edward)
It is. Well, I actually just moved to the US about a year and a half ago. I live in New York City, and I think it was two pronged. The first was really for medical reasons. I was diagnosed at the age of two with a neuromuscular condition called spinal muscular atrophy, and I was given a prognosis of five [years]. But I’ve obviously outlived myself now about 26 years and counting. But I was earmarked for groundbreaking treatment called Evrysdi. So I was brought up from South Africa to embark on this new treatment, and it’s been incredibly transformative for my life. But also my work is quite global, and given my affiliation with the United Nations, based here in New York, it just seemed like the right time to move. So, yeah, I’m so excited to be living here permanently now.
(Sarah)
Well, we’re glad to have you on the East Coast. And you also know Chris Bradford from his time at African Leadership Academy in high school. Can you share a little bit about that?
(Edward)
I do. So I was actually a member of the inaugural class of 2008, and Chris Bradford actually interviewed me way back when I was 16 years old at the time. Seems like a lifetime ago. And Chris and I really have such an incredible relationship. I really have huge admiration for him and his commitment to cultivating the next generation of leaders, not just on the continent of Africa, but globally. So this feels like a full circle moment. It feels like a reunion. So very special.
(Sarah)
Well, I know it’s a special moment for him as well.
(Elias)
Eddie, you’ve shared quite a bit about your experience in the past growing up as someone who is physically disabled. While you were growing up, was there anybody in your youth, whether that was a mentor, friend, or someone in global media, that you felt represented or even empowered by?
(Edward)
The honest answer to that is no. I think that part of the challenge for so many young people with disabilities, especially those of us from the Global South, is that we don’t have points of reference as far as possibility is concerned. I have always been deeply cognizant of the fact that somewhere between 90 and 98% of children with disabilities living in the Global South, particularly on the African continent, have never been to school. And that could have so easily been my life. But thanks to the tenacity of my mother, a single parent, she knocked on every door to ensure that I was able to attain an education within the mainstream education system. And I think that that was the turning point. I remember at the age of about six, looking in my mom’s eyes, and telling her, “I’d like to be like my younger brother, Wonga, and I’d like to go to school.” Of course, my younger brother was only in preschool, but that was semantics, really, for my developing brain. But I think that was the defining moment in my life that sort of set me on this path to be able to emerge as a disabled African with the world opening up for me.
So growing up, I sort of had to become my own point of reference, which was challenging. And I think today I’m really heartened because I get to be a point of reference now for other young people and kids with disabilities growing up.
(Elias)
That’s so wonderful. And you talked about your decision, choosing to embark on an educational journey being a turning point, and now you get to be a turning point for so many other people as well. My question for you is, you went on to attend Oxford University. You became the first African person with muscular dystrophy to graduate from that university with a degree in public policy. I was wondering if you connected with anybody there or you found purpose in other people with disabilities or other people who were marginalized in these spaces and how that really shaped your activism?
(Edward)
Yeah, it’s a great question. Oxford, for me was truly the fulfillment of a lifelong dream to really be on the global stage. It sort of represents the pinnacle of achievement, and in some ways, it was a little bit of uncharted territory. I got to Oxford, and I didn’t really know what to expect, and I think the institution also didn’t know what to expect. And so, in some ways, we were kind of building the aircraft as it was flying, for lack of a better term. And it was challenging. It was really incredibly hard. And I think in some ways, it was surprising to discover that even at the dizzying height of success as a disabled person, I was still confronted with some of the structural barriers that people with disabilities face day in and day out. That Oxford, while an incredible institution with a 900 year plus history, also did not quite know what to do with all of the needs that I had and all of the challenges. And so, very quickly, I found myself in a very precarious situation. The nature of my disability is such that I need 24/7 care, and the full scholarship that I received did not make room for this need.
And so over and above just wanting to be a student like everybody else, I suddenly had to sort of advocate for myself full time. And I think that kind of illuminated for me the fact that we still have a long way to go. And I thought that achievement and success, it would inoculate me against some of these inequities that people with disabilities face. But in some ways, I think it’s even more difficult at the very top because there’s so few of us. And so it was a bit of a rude awakening. But I’ve emerged from that experience, I think, more committed than ever to ensuring that we focus on the self-actualization of people with disabilities over and above the attainment of education.
(Sarah)
In your talk this morning, you talked about not just thinking of radical inclusion, but radical humanity, and really humanizing people, rather than just thinking of compliance. Can you share a little more about that concept and whether you saw some changes at Oxford since you’ve graduated in that respect?
(Edward)
Yeah, sure. So what I’ll say is that compliance is how we currently do public policy. It’s about ensuring that we fall in line with certain protocols, that we fall in line with sort of what is expected. And of course, we need compliance to be able to enforce change, but we don’t get to systemic change through compliance. Compliance only takes us so far. And I say time and time again, I sort of sound like a broken record at this point, but I think it’s important to repeat this, that what makes the space accessible isn’t the ramp, right? It provides entry into a building, but what makes the space accessible is really the ability to feel validated and to have some agency and dignity once you’re in that space, for everybody, regardless of disability. So in some ways, radical humanity is about pushing the boundaries of possibility, recognizing that when we navigate spaces, we do so as human beings, not as items to be checked off on the checklist. And so that’s really the invitation that radical humanity is sort of saying that real inclusion means attending to the fullness of one’s human experience and not just whether they’re able to be pigeonholed into a kind of predetermined institutional set up.
I’d like to think that through my story, Oxford has hopefully been inspired to change. So that’s my hope. And of course, the memoir, my forthcoming memoir, Sipping Dom Perignon Through a Straw, really chronicles my time there, and hopefully will offer up a blueprint of what to do, but also what not to do.
(Sarah)
And is there anything you can share about the timeline for the release or anything else you can give as a teaser?
(Edward)
Yes, I am so excited. So the book is slated for publication in June, this summer. It’s going to be published worldwide by Hachette, and I’m so thrilled. It really is my love letter, I think, to the power of the human spirit. Of course, the dedication is to disabled people everywhere, but it really is a manual for nondisabled people, as well, to really glean some insight and perspective into the lived experience. So I’m so thrilled. I call it my anti-grit memoir because in some ways I think that grit can be a little bit harmful, right? I’m sort of a recovering sort of believer in that sense, that grit is all one needs. But in the absence of institutional support, grit only takes you so far. And so this is my call to action, to go beyond the individual, and start thinking about what needs to be put in place at a structural level to ensure that people have the tools to be able to succeed.
(Sarah)
Well, there’s no accountability for systems, for organizations, if you’re just looking at the individual and personal experience and things like that.
(Edward)
Absolutely, you’ve hit the nail on the head. And I think for disabled achievers, in particular, I think that we are saddled with that baggage a little bit. Like we want to prove that our disability is not getting in the way of our ability to perform. But I think we often do that at the expense of our own mental health, of our own emotional wellness. Where the institution fails, we overcompensate by pushing our bodies too far, by doing more than what we ought to do. And I think that’s sort of, it’s a bit of a failure, I think, of society and structural arrangements. And so it’s my hope that this book will offer a paradigm shift in that regard.
(Sarah)
We look forward to its release.
(Elias)
One thing that I noticed was really interesting while you were speaking earlier is that you kind of used a ramp as a symbol for a gateway to accessibility, but not necessarily something that keeps disabled people in a place and allows them to achieve their full potential. I wanted to ask, what kind of work can we do to ensure that accessibility and inclusion is sustainable and long lasting? And what measures are being taken to uplift newcomers into this realm of advocacy and keep them engaged?
(Edward)
Yeah, so I think the best way, I think we need to keep revisiting the language. I think we need to go back, and just when we think we’ve defined accessibility, I think that’s the time for us to go back and look again. I think the words that we use—inclusion, equity, diversity, belonging—these are important but in some ways, they’ve become hollowed out a little bit of their true meaning. I think we constantly need to ask ourselves, what do we mean when we say accessibility? What do we mean when we say inclusion? What are we really after? And I think paying attention to those underlying objectives and the underlying values that we want to espouse is how we begin to move the needle in a meaningful way. So, again, not conflating the installation of a ramp and equipment with true accessibility, that what we want are people who are validated and who are able to thrive regardless of disability. That that requires more intervention. It’s not just necessarily making the built environment accessible, but we need to be thinking about other metrics as well. And so I think paying attention and constantly revisiting and reinterrogating these concepts, I think will serve us well.
(Elias)
I think that’s such a valuable point for people like me, especially, who don’t have a disability, to really understand and make sure that the jargon that we’re using actually carries meaning with it and that our actions, we act without cognitive dissonance.
(Edward)
Absolutely.
(Sarah)
And Eddie, having spent your entire career engaging with organizations and government bodies, trying to get them to think past the institutionalization and compliance and words that have become hollowed out, what advice do you have for UNC’s leadership as they grapple with these issues and confront the same things that Oxford has been going through or did when you were at the university? And I know you’re meeting with the chancellor later today, so what’s on your mind as you think about that meeting?
(Edward)
I think what’s on my mind really is this question, I think leadership has to ask itself, what kind of environment are we creating? And I think what gets lost in the accessibility conversation is that we’re often stuck in the minutiae of compliance. To kind of repeat this again, we’re kind of bogged down by kind of the policy, what’s right, what’s not right, without necessarily thinking about what is the end goal, what is the objective here? And if the objective is to foster an environment where you attract talent from all corners of the world, from all perspectives, from all backgrounds, if that is your goal, then disabled people, and disabled students specifically in this context, are at the cornerstone of that. And so paying attention to accessibility and inclusion is not a legal question in a compliance framework, it is actually a question of how you make this institution fit for purpose in the twenty-first century. There’s a larger goal there. And so that would be my hope, is that the leadership sort of sees this conversation not as a separate issue, but as part and parcel of the main objectives for how you grow this institution and make it into a beacon of knowledge and research and cutting-edge thinking.
(Sarah)
So I’m hearing about the challenges of let’s get past just liability and these basic bare minimum questions. But I’m wondering, how do we inform leadership? What stories do they need to hear? Or what expertise from academia or otherwise could help broaden that vision, such that it’s not just how do we not become in a legal situation, but having a true vision of what a radical, humane, and welcoming environment could look like?
(Edward)
That’s a really great question. And I think part of that is to… it involves interrogating our own assumptions, right? So I think we need to start taking disability studies as a serious discipline. I think that this space is endowed with remarkable thinkers, with public policy experts, cultural innovators, storytellers who really bring, who really illuminate the disability experience in all of its complexity and glory. And I think if we just paid attention to the voices that are coming out of this community, brilliant, razor sharp people who are offering incisive analysis about the structure of the world through the lens of disability. If we start taking that seriously, then I think we’ll begin to see that, oh, actually disabled people have so much to offer. We’re not just perennially complaining about the lack of accessibility, but that we’re actually helping to shape the future. We’re actually helping to shape discourse, right? That I am not just Eddie, somebody living with a disability. I am an expert and an intellectual in the space of disability inclusion. And when we start validating the intellectual contributions of disabled people, I think that’s when we begin to see a change, that disability is not just a lived experience, it’s a serious area of critical inquiry. It’s an area of philosophical engagement, cultural engagement. And so opening up the canon and bringing it to the mainstream, I think will go a long way.
(Elias)
In our research for this episode, we noticed that Time magazine featured you in a piece talking about your desire to enter the next frontier: space. The author described in his words that you will float free from the wheelchair that typically confines you. What do you expect this to feel like? And does the prospect excite or even scare you?
(Edward)
It’s a great question. So I’ve been pursuing this for a while, and I kind of put it on hold so that I could focus on the book. And since I first made this public a couple of years ago that I’ve got this intention of wanting to go to space, it’s actually, it shook up the sector. And we see that various disabled people are sort of entering the space and trying to figure out how we could make outer space accessible to all. So I’m just looking forward to it. I think it would be such an incredible statement of possibility. And I think just to be able to feel my body in a different way will be probably a little bit trippy. I think it might be one of those things where you’re like, “Oh, wow!” But I think the opportunity to feel my body experiencing a different kind of sensation, there’s something about that that’s a bit thrilling.
(Elias)
I think that the idea is incredibly interesting because earlier in your talk this morning, you spoke in very similar language when describing what it would feel like to have equity down on Earth. So by launching it to space and being able to be recognized and respected up there, it’s showing that the possibilities are really limitless down here as well.
(Edward)
I love that, you’ve just made me appreciate that more. I think you’re absolutely right. I think if we can achieve that feat, then we can make accessible transportation available. If we can send somebody with a profound disability into space, and we can make sure that every disabled person, no matter where they are, that they’re able to get from point A to point B quite seamlessly.
(Elias)
Thank you so much, Eddie.
(Sarah)
And in that same article you shared, if I have five minutes to talk to the world, what would I say to capture humanity’s attention? Have you thought more about what that would be?
(Edward)
I think I’m still thinking about it, but I think it will be more along this line, along the lines of radical humanity. I think that astronauts often talk about the overview effect, that once they’re in space, they look down on Earth and they see the fragility of the planet, the thin layer that covers the Earth, and they become champions for environmental justice, and they begin to realize that this is the only home that we have. And I think the overview effect, from the perspective of disability, I think will offer new insights and thinking into how that fragility doesn’t just extend to the planet as our home, but to ourselves. That we navigate fragility day in and day out. And instead of running away from it or being fearful, what if we leaned into it? What if we leaned into embracing the fragility of our bodies and the vulnerability of our bodies and the precariousness that we navigate? And I think that ableism, a deconstruction of ableism gets us to that place where we’re not fearful of our limits, but we actually see our limits as part and parcel of what it means to be a human being.
(Sarah)
The last Food for Thought speaker was Dr. Ryan Hickox from Dartmouth College, and I wish that we could get the two of you in a room because he shared about space and just gave us a sense of what it’s like to research black holes and consider questions of humanity. But of course we’re running out of time. So thank you so much for sharing what you have with us. And Elias, any closing question you’d like to ask?
(Elias)
What is one book or piece of media that you engaged with recently, and how did it connect to you?
(Edward)
I recently read a memoir by Natasha Trethewey called Memorial Drive, and it was just so harrowing, but also incredibly impactful, sort of talking about gender violence and gender inequity, and it just left such a mark on me. I love memoir because I think it really offers, it’s a different way of being able to analyze structures but through the human perspective.
(Elias)
And I’m sure that we have another memoir to look forward to soon.
(Edward)
Yes, we do.
(Sarah)
Eddie, thank you so much.
(Elias)
Thank you so much for joining us.
(Edward)
Thank you so much for having me.
(Elias)
Thank you for listening to Catalyze. I’m Elias Guedira from the class of 2026.
(Sarah)
And I’m Sarah O’Carroll. And that was Eddie Ndopu, the UN SDG Advocate for Accessibility and Inclusion.
(Elias)
You can let us know what you thought of the episode by emailing us at communications@moreheadcain.org or by following us on Twitter, Instagram, or Facebook at @moreheadcain.
(Sarah)
If you enjoyed this episode with Eddie, please join us for the remainder of the Food for Thought speaker series on Fridays this semester. You can find more information and RSVP on the Morehead-Cain Network. All events begin at 8:00 a.m., with a speaker beginning their talk at 8:30. Thanks for listening.
