“When I could no longer pursue the dream of being an artist because my hands became too weak to hold a pencil, I needed to dream, a new dream, and I realized that that is, in itself, a gift to be able to sort of pivot and change direction and ask yourself, what else? That I still have my spirit. I still have my mind and I still have a deep desire and yearning for an extraordinary life. And I still want to be of service to humanity and the world.”
Eddie Ndopu is an award-winning disability activist from South Africa and one of 17 United Nations advocates for the Sustainable Development Goals. Diagnosed with spinal muscular atrophy, a rare degenerative condition, and given only five years to live, he is now 30 and has dedicated his life to ensure that the voices of those at greatest risk of being left behind are being amplified and heard worldwide.
During this inspiring episode, Eddie recounts the difficult daily challenges he has faced throughout his life, especially during the COVID-19 pandemic, and how his mother, “the wind beneath his sails”, sacrificed so much to make his life possible. He also talks about his big dream: to be the first physically disabled person in outer space and to address the United Nations from there.
Eddie’s heartwarming story and courageous spirit are proof of his belief that everybody should be afforded the opportunity to dream and become everything that their imagination desires.
Melissa Fleming 00:00
From the United Nations, I'm Melissa Fleming, and this is Awake At Night. Joining me today is Eddie Ndopu, an award-winning disability activist from South Africa. Since 2019, Eddie has been one of the seventeen United Nations advocates for the Sustainable Development Goals. Eddie suffers from spinal muscular atrophy, a rare degenerative condition. Eddie, you wrote recently in Time magazine that you are a wheelchair user in perpetual pursuit of a barrier-free life. What do you mean by a barrier-free life?
Eddie Ndopu 00:56
A barrier-free life, you know, is a life that is really a full life. I believe that the next frontier of inclusion is really around reimagining access, reimagining accessibility beyond the ramp. As a wheelchair user, I've come to the conclusion that what makes a space accessible is not the installation of a ramp. What makes a space accessible is really the freedom and the sense of belonging and the dignity that that space affords for all of us, regardless of who we are or where we come from, to really come together and feel validated. So a barrier-free life is really, I think, the pursuit of self actualisation and the pursuit of dignity and agency. For everybody.
Melissa Fleming 01:57
For everyone. Can you just describe the kind of disability that you have, and what it's like right now?
Eddie Ndopu 02:06
So at the age of two, I was diagnosed with spinal muscular atrophy. It's a degenerative condition that affects the voluntary muscles and it results in progressive weakness, right. So in other words, the older I get, the weaker I become and my doctors gave my family a prognosis of five, that I wouldn't live beyond the age of five. And, you know, I'm sitting here today in conversation with you having outlived myself by 25 years and counting. And today, you know, I'm a thirty-year-old, young person who you know, is able to, to be here, right.
And so, on the one hand, I'm grappling with the very real sort of physical manifestation of this rare disease and what it has done and is continuing to do to my body. What I was able to do five years ago, I'm no longer able to do today. I had dreams of becoming an artist. I used to sketch incessantly. And now I'm no longer able to do that. But you know, on the other hand, it's gonna sound strange saying this but my disability has really been a gift in the sense that it has allowed me the capacity to dream new dreams.
When I could no longer pursue the dream of being an artist because my hands became too weak to hold a pencil, I needed to dream, a new dream and I realise that that is, in itself, a gift to be able to sort of pivot and change direction and ask yourself what else? That I still have my spirit. I still have my mind and I still have a deep desire and yearning for an extraordinary life. And I still want to be of service to humanity and the world. And so while I moved through the world, with great difficulty on a day-to-day basis, in terms of my disability, I know that there is so much more that I'm able to offer beyond my body, right. And so it's that sort of dual perspective that has really defined and shaped my life and my work.
Melissa Fleming 04:50
You were born in Namibia. Thirty years ago, 1990. I also believe your brother was diagnosed with the same condition. Can you tell me about that and then when was it as a child that you noticed that you and also your brother were not the same as the other children around you?
Eddie Ndopu 05:14
Yeah, so for me, it was evident from the very beginning. You know, my mom tells me that I pretty much started and stopped walking just before my diagnosis at the age of two. And you know, by the time I was seven, I remember shopping for my first wheelchair and they didn't make wheelchairs that small. So I ended up using a stroller for a really long time until I was able to get a wheelchair and so my disability and the relationship with my degenerative condition, which was evident from the get-go. It's all I've ever known.
My brother, on the other hand, you know, he was diagnosed much, much later, he must have been 21. So it was completely unexpected. I was diagnosed with Type 2, spinal muscular atrophy. We later found out that my brother has Type 3 which only shows up much later in life so it took the family by complete surprise, and I guess it was... I think there is an unacknowledged devastation there. And it's unacknowledged because I think so much of my family's experience with spinal muscular atrophy has been about not complaining just sort of, you know, carry on, right?
And I think it's, you know, served us in a sort of allows us to sort of, you know, move on with our lives. But I think we haven't really had a moment to just acknowledge the full impact this condition has had on my brother. I think it's something that he still deals with, you know, obviously, because he too, like me, is contending with the fact that he's going to get weaker. But I think there is hope and, you know, I find myself in this extraordinary position where, you know, thanks to technology and everything, you know, all of the evolutions in medicine and, you know, in the world that, that there's possibility on the horizon.
Melissa Fleming 07:39
I wonder, you know, taking you back to when you were little, you must have needed a tremendous amount of care. I mean, first of all, it must have been completely frustrating. You said, you could walk and then you couldn't walk, and you could do things and then you couldn't in your whole life. You could draw, and then you couldn't draw. But I wonder, you know, how you grappled with that kind of losing these abilities, but also if you can talk a bit about who took care of you?
Eddie Ndopu 08:11
Yeah. So my mother has truly been the wind beneath my sails. I mean, she literally has made my existence possible. And it's strange, right, because I think every parent does all that they can to set their children up for success and give them everything that they need in life but my Mum has superseded all of that, right? I admire my mother, not just as a parent, but as a human being, who, in many ways. has sacrificed so much of her own life in order to step in and not just be a primary caregiver but really be my biggest advocate, you know.
The reason why I was able to attain a mainstream education at the age of seven and be, you know, one of only a handful of disabled children in the entire country to be enrolled in a regular school is because of my Mum’ persistence and insistence and pounding the pavement and knocking on every door and she was told, ‘This is not going to work,’ you know, and she's just like, ‘We’ll make it work and I will find somebody during the day to be with him’ and she managed, you know, to cobble together an experience that made me feel that I was every bit as valued as my non-disabled counterparts, you know?
So my Mum, she did that for me, right? And she didn't just do it as my mom. I think she did it because she believed deeply that I am deserving of a life that is truly open, you know, and so I really owe her a debt of gratitude. Truly.
Melissa Fleming 10:34
What does the caregiving part of her role entail?
Eddie Ndopu 10:38
So, you know, I jokingly say to people that, you know, my Mum hasn't had a good night's rest, and in thirty years, and I say that you know, sort of, tongue in cheek but truly, there's an aspect of that that’s true, right? That, you know, for the longest time, you know, because of my degenerative condition, I need to be turned at night to prevent pressure sores from forming, you know, and that's every two hours, right? And my mom has done that for the better part of my life. Every day, seven days a week.
You know, and then there, you know, the daily tasks, right, because I need to wake up to three hours ahead of time to get dressed. I need assistance, with bathing, with clothing, with feeding, every aspect of my life that's physical. All of that needs to be facilitated. And, you know, it's interesting, because right now, as I speak to you, I have a team that consists of about four people and therefore, right, I think about that, like, my Mum was one person and she did all of that, you know, for twenty-something years before, I was able to identify outside help and get a team and experts to do that. My mother did that, you know, single-handedly.
Melissa Fleming 12:02
What an amazing woman. Wow. Can you just tell me about a little bit so that we can imagine what it was like maybe on that first day of school when your mother won her battle, and you were being wheeled into the classroom and you were probably the only one in that school?
Eddie Ndopu 12:22
I remember being elated, absolutely overjoyed, because there was an earlier experience that I think really set the wheels in motion for my early education. I remember sitting on the linoleum floor of our home one day, and I was staring at a blank screen. The TV was switched off. My Mum had just walked through the door and she looked at me she's like, ‘Why are you staring at a blank screen, like, what's wrong?’ And I didn't say anything. And eventually, my Mum sort of, you know, crouched down, and she held my hand and she's like, ‘What's wrong, I can see something is bothering you.’ And I looked at her and I said, ‘Well, I want to be like my younger brother, I want to go to school.’ And, you know, my mom sort of looked me in the eye, and she's like, ‘We will get you into school.’ And, and that was probably a year before she wheeled me onto the grounds of my school.
And so it was really the combination of her looking me in the eye, the year prior saying ‘We're going to make this happen’ and so I was beyond thrilled. And I don't think I even said goodbye to her properly. I was just so excited to be with all the other kids. And she's like, ‘Are you okay?’ I'm like, ‘I'm fine. You can go now, Mum. Thank you for dropping me off.’ And you know, I think I suspect she sort of stood back and watched me for a little while as I interacted with all of the other kids and I can't imagine what that must have been like for her. But for me, it was literally a turning point.
And I remember that day, that first day, I was assigned to what they called the special education section of the class and I wrote my name. I took a piece of paper and I wrote my name and the teacher came around and she's just like, ‘Who did that?’ I’m like ‘I did.’ She's like, ‘You wrote your name?’ I’m like, ‘Yeah.’ She's like, ‘I don't think you belong in this section of the class. Let's see what else he can do.’
And she started putting me with all the other kids. And that literally changed the trajectory of my life.
And when I reflect back, I mean, now I have since gone on to graduate from Oxford with a Master's in Public Policy and became the first African with the degenerative disability to do that. Ever. You know, and for me, that's... it's not just a personal achievement. It feels like a symbolic victory for all of the kids, disabled kids, all over the world who never get to see the inside of a classroom.
Melissa Fleming 15:23
I wonder if you did face any issues, you know, were the kids kind to you or did you have….I know that the other is often...kids can be quite mean?
Eddie Ndopu 15:37
You're right, you know, kids can be quite mean, and but also on the flip side of that, kids can also be sort of the most open-minded at the same time, right? It's a strange thing. I found myself, you know...Initially, I think the kids were all just excited to take turns to push my wheelchair to sort of see who could push me down the fastest, right, which is also very hair raising in and of itself, that they could, you know, crash me into something.
But I think, you know, from the very outset, I think my presence within the mainstream schooling system wasn’t just a benefit to me, right. It didn't just transform my life. But I think in many ways, it transformed the lives of all of the other kids, right? They're able to sort of say that, ‘Yeah, sure. He uses a wheelchair, and he needs help, but he's also my friend.’ Right? And I think that that is the power of inclusion, right. And I think when it happens early on, what that does is that children then grow up embracing difference. Of course, the inverse is true too that, you know, depending on other forms of socialisation, children can also, you know, reject difference, right. But in my case, I made lots of friends, and I actually was able to sort of see myself in a really positive light and, you know, that began to define my schooling experience well into high school.
Melissa Fleming 17:27
I just wonder at what point this kind of activist in you was ignited that you were not only working for your own education, but you're also wanting your example to be one for others who are disabled?
Eddie Ndopu 17:44
The turning point was when I was offered admission into the African Leadership Academy in Johannesburg. It's this Preparatory School for future world leaders and I had applied and, at first, I did not get in. I was 16 years old and this was for, you know, A-Levels just before University. But I really, really, really wanted to get into the school, something in me said you should apply and, and I did, and, you know, there are thousands and thousands and thousands of applications. I made it all the way to the finalist weekend, and I get a call and they say, ‘You know, we're not sure we're able to meet your needs. We don't know if we can.’
You know, I thought about it and I'm just like, ‘Nope, I need to go to that school.’ And so behind my Mum's back, I wrote a letter to the founders of the Academy and I said, you know, ‘My name is Eddie. I believe I'm a leader, I think you've made a mistake. I really, really need to be in the school, because I have a dream to make education accessible and inclusive for all of the children with disabilities on the continent of Africa. I want to be able to do that.’ So I wrote them a letter and I didn't hear from them for a while.
And then one Sunday afternoon, the phone rang, and my Mum said, ‘It's for you’ and I got the phone and they said, ‘We got your letter, congratulations. You've made it into the inaugural class.’ That was the turning point and that made me an activist and I've never turned back since. I spent those two years, you know, really becoming the person that I think I was meant to be and I was exposed to the world. I started a civil rights campaign called the Global Strategy for Inclusive Education and I presented it at the World Economic Forum. I was 19 years old and so it was just crazy. I won a scholarship to attend college in Canada and I was just like, you know what, ‘it's okay, right? I can be young and I can be a leader at the same time and that and that there is no contradiction there.’
Melissa Fleming 20:04
What are the doctors saying to you now and what was your condition at this point? So you're on your own in Canada or...?
Eddie Ndopu 20:11
So I’m on my own in Canada for the first time in my life and I insisted on doing that, you know, my Mum was really worried. But the school that I went to, they happen to have a full time, you know, care aide programme on campus, and the great thing about that is that these were, you know, regular students looking for part-time work, and they will just become care aides. And so, you know, it was fully integrated. These were my classmates. These were my friends, so it didn't feel like we were in the clinical setting, right? And so it was incredibly liberating. And I needed it. I needed to be able to make sense of who I am outside of the home, right? I needed to feel like an adult and, at the same time, you know, my condition, you know, was declining. You know, by this point, all of my exams and essays I needed to do through dictation and, you know, I ended up graduating with High Distinction.
Melissa Fleming 21:30
And then you went to Oxford, I believe?
Eddie Ndopu 21:33
Well, before Oxford, I actually worked for Amnesty International for two years. By this point, I had committed myself to fighting for human rights for all and so I landed my first job as a campaigner working across the continent, really advocating for the release of young political prisoners, supporting human rights defenders. And, you know, that was for a good two years.
I had never seen a wheelchair user in the field who is not the beneficiary and I'd wanted to, sort of, you know, be that person, right? Be the campaign or be the person on the ground is working alongside communities but who is really in the position of dignity and who is able to be the advocate on the ground. And then after two years, I was looking for a new challenge and somebody suggested that maybe I think about going back to school and then Oxford, sort of, showed up. I, you know, applied for a scholarship and I got that and I started that journey.
Melissa Fleming 23:02
How many people in the world are disabled now and what are their barriers? And what do they need?
Eddie Ndopu 23:10
There are 1.2 billion disabled people in the world covering both visible and invisible disabilities. That's about 15% of the world's total population. This is a huge segment of the world's total population. People don't know this, because I think that people are afraid of disability. I think people don't know how to talk about disability. It makes people uncomfortable and it comes from a place of fear. And I think that because, you know, disabilities are associated still, with, you know, neglect and isolation and deprivation, I think that there is a resistance to talking about it within many communities around the world.
Disabled people are still more likely than not to be unemployed, to not have any access to health care. You know, the vast majority, the overwhelming majority of people with disabilities, all over the world, live in poverty, and often there's a link between poverty and disability. It's both the cause and the consequence of disability and so I think more than anything, I think what we need, Melissa, is really a paradigm shift. I think that disability and ability are truly two sides of the same coin. I think we don't talk about it because they think we still insist on perfection. And I think disability reminds people that actually, imperfection is more intrinsic to all of us than perfection is. Disability reminds us that there is no such thing as normal, so perhaps maybe disability is the most normal.
Melissa Fleming 25:14
People with disabilities are having a really high hard time during the COVID pandemic. First of all, what has your personal experience been?
Eddie Ndopu 25:24
People think I'm exaggerating when I say that I did not leave my apartment for an entire year. I literally stayed in my apartment for a full year, did not go outside, could not go outside. My mother was the only person that left our home to get groceries and the essentials that we needed as a family, as our household. But my brother and I, both of us as young disabled people, we did not leave the building in which we live.
Prior to COVID, I had a full-time care assistant who would travel with me and really be my right-hand person. I could no longer have my care aide with me and I thought about all of the people with disabilities across the globe who rely on care assistance that was completely disrupted. And I think beyond that, Melissa, there is a particular devastation around the relationship between COVID and disability because I feel as though the world has completely ignored people with disabilities in the context of COVID. We have not been explicitly named as target groups for the vaccine and I think the failure to explicitly name people with disabilities as a group that should not be left behind in, not only the vaccination rollout but also in what we're calling building back and better how we get out of this pandemic. We've failed to mention people with disabilities and I think that it is truly a travesty of justice and I think it's emblematic of how disability is always negligible.
Melissa Fleming 27:34
So you and your brother, because the COVID-19 would have been absolutely devastating for you had you caught it, were at home in your apartment for one year. I can't imagine that you were just watching TV. What were you doing during that year, Eddie?
Eddie Ndopu 27:53
I was really applying my mind, Melissa, to how I can be of service. I need[ed] to figure out how to use my voice and so I spent much of my time in lockdown really thinking about this quite deeply. I started writing a book, my memoir, and just, I think really writing about my life on the page in order to make sense of life itself. The fragility of life, but also the joy and the miracle of life at the same time, right, that all of these things constitute existence.
Melissa Fleming 28:49
What did getting a vaccine mean for you?
Eddie Ndopu 28:52
It meant everything to me. I felt this relief. I took a gulp of breath and I was sort of like, Wow’ and this was against the backdrop of really scarcity and shortage of vaccine, right, in my part of the world in South Africa, but also on the continent of Africa. I felt a little bit of survivor's guilt, as well. A lot of things, sort of, went through my head. It was really a necessity because I was earmarked for treatment, you know, groundbreaking therapeutic to potentially, dramatically slow down the weakness that's associated with my condition and, you know, of course, a prerequisite for that was getting the vaccine, right, in order to fly up here to the US.
Melissa Fleming 29:49
And that's why we're sitting here together in New York. I waited this long to ask you but this is the real exciting news so this is a new medication actually based on mRNA technology which is the technology that Pfizer, bioNTech, and Moderna used for their breakthrough vaccines. It's still in the trial phase, right. How did you end up from South Africa here in New York having access to this treatment?
Eddie Ndopu 30:17
You know, Melissa, the universe has a way of conspiring in our favour when we least expect it. So all of it is absolute serendipity, I think it was meant to be. I met somebody, many years ago, while I was still at Oxford who became a dear friend and she's a friend of a friend and she happens to work in the biotech space. And I was introduced to her and, you know, she's been saying, you know, for many years, like ‘Eddie, you know, you should really consider getting onto treatment one day.’ And I was just like, ‘I don't know.’ It's something that's so, you know, unfathomable to me and I've never considered it and, at the time, the therapeutics that were around, were just, you know, really invasive and, you know, it was just such a gamble on so many levels.
And, you know, it just so happened that, you know, we stayed in contact, years later, and she joined a biotech investment firm which invested in the early stages of the development of evrysdi. She put my name forward and I've been here for about, you know, a couple of weeks, 8 weeks, 7 weeks, and it's surreal.
Melissa Fleming 31:43
In what way?
Eddie Ndopu 31:45
So, several days into treatment, I did something I hadn't done since I was probably 19 years old when I'd started at the Academy, and that was lift my left arm unaided. And the way it happened was just so random. I did not notice at first. My assistant noticed it. I had my phone on the table and I just reached for it without thinking about doing it so it was a very involuntary thing. And my assistant looked at me, she's like, ‘Did you see what you just did?’ And I looked down, and I held my phone, I'd reached for it. And it was just, you know, extraordinary. I mean, it's such a simple moment but so profound, and I think it's surreal. I think it's surreal on another level too.
I think that, you know, I'm beginning to ask myself different questions that I've never asked myself before, like, sort of like, ‘What am I gonna do with the additional time that will be afforded to me as a result of this treatment?’ An improved and enhanced quality of life, that I actually have an opportunity to do more. And that is exciting. It's so thrilling.
Melissa Fleming 33:28
What were the doctors telling you before? I mean, you had that five-year diagnosis. Why were they saying that you were continuing to live?
Eddie Ndopu 33:42
That remains an unanswered question. I think the honest truth is that since that prognosis, I had never really visited a doctor. Beyond, sort of, our general practitioner, when, you know, we got the flu, or you know, sort of that but I never visited a specialist. Ever. And it wasn't an intentional choice. I think maybe on a subconscious level. I think, as a family, we just really wanted to get on with with with our lives, and I think I just couldn't bear to have my life sort of dissected in that way. I almost did not want to know. I just kind of wanted to just plough through and keep living and so, you know, when my friend, you know, said to me that, you know, I should consider treatment. Part of me was kind of like, ‘Do I really want to face the reality of what they might say.?’
And so all of this has been a pleasant surprise, you know, in the sense that it's all grounded in the hope and possibility and I’m not married to a particular outcome. You know, I think just the fact that I'm here, you know that I'm sitting here with you having this conversation. This feels like the victory, this feels like the win, right, that I even have the shot in itself, right? Because I just know that so many people don't even get that.
Melissa Fleming 35:41
I guess you're really hoping that your brother will have the chance?
Eddie Ndopu 35:44
Melissa Fleming 35:45
Is there a chance?
Eddie Ndopu 35:46
There is a chance and there's a chance because the gift of my life now is that I am able to move mountains, right. And I'm prepared to move whatever mountain I need to move in order to get my brother access.
Melissa Fleming 36:01
I want to ask you about your work for the United Nations. I mean, you're working as one of the seventeen advocates for the Sustainable Development Goals. What is this role and what do you do?
Eddie Ndopu 36:14
Well, it is the great honour of my life, to really advocate for accelerated action around the goals. But I think, for me specifically to think about those who are at greatest risk of being left behind to ensure that their voices are amplified in each goal. I think for anyone who feels disadvantaged or different or excluded. I say to you, that you are, you're bigger and more expansive than the space you currently occupy. I think it's so easy to define people in relation to their circumstances, that when we see impoverished communities, all we see are poor people. But in these impoverished communities are artists, and scientists, and poets, and thinkers and dreamers. They're human beings who find themselves in really precarious circumstances, but who they are, their spirits are much larger and transcend those circumstances. And I always want to remind people that that that transcendence is who we are at our core.
Melissa Fleming 37:50
Eddie, what keeps you awake at night?
Eddie Ndopu 37:54
I think what keeps me awake at night is really the refusal to participate in any attempt to shrink and contain marginalised people. Everybody should be afforded the opportunity to dream and become everything that their imagination desires. And so I worried that sometimes we restrict the imagination of people because of who they are or where they come from and I, kind of, want to say, ‘No, let's, let's not do that’ and I think that's my purpose is to help open up the imagination for all of us.
Melissa Fleming 38:50
I think you have one big dream that you've talked about, can you share that with us?
Eddie Ndopu 38:56
I do. I do. My dream is to address the United Nations from space as the first physically disabled person in space. It's my love letter to people with disabilities everywhere and it is the biggest stage I can think of to say something that will hopefully inspire and resonate with people. And I'm doing all I can to reach that dream.
Melissa Fleming 39:31
I have no doubt this dream will come true for you, Eddie. It's been such a pleasure to have you on Awake At Night. Thank you so much for joining me.
Eddie Ndopu 39:39
Melissa. Thank you so much. The honour has been mine. Thank you.
Melissa Fleming 39:52
Thank you for listening to Awake At Night. We'll be back soon with more incredible and inspiring stories from people working to do some good in this world at a time of global crisis. To find out more about the series and the extraordinary people featured, do visit un.org-awake-at-night. On Twitter, we're @UN and I'm @melissafleming. Eddie is @eddiendopu and you can also find him on Facebook and Instagram. Subscribe to Awake At Night where Ever you get your podcasts and please take the time to share with your friends and review us It does make a difference.
Thanks to my producers Bethany Bell, and the team at Chalk & Blade: Laura Sheeter, Cheri Percy, Fatuma Khaireh, Matt Nielsen, and to my colleagues in the UN studio and also Roberta Politi, Darrin Farrant, Tulin Battikhi, and Bissera Kostova.
The original music for this podcast was written and performed by Nadine Shah and produced by Ben Hillier, the sound design and additional music was by Pascal wise