Eddie Ndopu’s celestial ambition
A disabled South African activist is talking to his doctors, a pharmaceutical company, the UN and Elon Musk about a celestial ambition
Aman in an electronic wheelchair is coming towards me. Eddie Ndopu, carried along in his chariot, has dark eyes that radiate intelligence from behind thickframed glasses. He’s immaculately dressed in a tailored blazer with silk pocket square, the formal presentation offset by — there is no way around it — a very loud tie. Ndopu is a 27-year-old living with spinal muscular atrophy, a motor neuron condition affecting the voluntary muscles, resulting in progressive weakness. He was diagnosed at the age of two, and was not expected to live past the age of five. If he sounds familiar, it is because he made headlines last year as the first disabled African to graduate from Oxford University, after completing a Masters in public policy.
Now Ndopu is dreaming of the stars. His goal is to be the first person in a wheelchair to address the UN General Assembly from space.
Either way — from space or from this planet — on December 3, World Disability Day, Ndopu is billed to address the UN on its sustainable development goals.
The maxim of the global development plan is “leaving no one behind” — a pledge to increase the quality of life for all by 2030.
On the topic of activism, Ndopu finds it impossible to separate the man from the mission. “My life, how I choose to move through the world, is my own resistance.” He reminds me that 15% of the world’s population — more than a billion people — live with disability. This makes people with disability the largest minority group on the planet. Disability is also a permeable category, one that “people can slip in and out of throughout their lives. It is a thread in the human condition, yet one that we still disavow.”
Ndopu’s message is twofold. First he wants to make people living with disability visible. Furthermore, he says, the goal is to go “beyond zero”. He explains: “People living with disability are at -10, and the aspiration is to get to zero. If you can get on a bus, if you can use a toilet, if there is a ramp, sign language or Braille technology, we celebrate that as the benchmark of inclusion. In fact, we are only moving from -10 to 0. I’m fighting for a world beyond zero.
“What does access to joy look like? Access to intimacy, access to love? Access to everything that is fabulous? Access to the good life? At the end of the day the pursuit of self-actualisation and the struggle for social justice are one and the same thing. If someone can have a dream for themselves, that is the work of liberation. The ramp is not enough, I want the whole building.
“One of the things I am most passionate about is inclusive education, the primary beneficiaries of which are not disabled people. There is a paradigm shift in the classroom when able-bodied people interact with people living with disabilities. Exposure of kids at a young age to disabled people normalises difference, difference is embraced and that radical paradigm shift transforms social interactions leading to the difference becoming a part of everyday life.”
For Ndopu, the journey of going into space is a romantic voyage, bred of the desire to capture the world’s imagination, and from that platform say something meaningful about disability and possibility. “I’m going with a specific message, to address the UN General Assembly from the edge of the planet as the first wheelchair user in space.” It is a powerful statement about leaving no one behind.
But the adventure is secondary to delivering his message. “I’m very excited, and terrified to go to space, but it’s much more than that for me. This is the ultimate form of resistance, the ultimate middle finger to everybody that ever thought I could not achieve something spectacular.” He goes on, “Let’s be real, I’m black, queer, disabled, living on the continent of Africa. This is for all of us.”
So, down to the practicalities, just how possible is this? With regards to the UN, Phumzile MlamboNgcuka, the executive director of UN Women, is one of Ndopu’s champions. The UN has confirmed that should Ndopu go to space, he will address its General Assembly. As for his medical care, he has the support of the spinal muscular dystrophy medical fraternity, and a pharmaceutical company, Rocket Pharma, which have pledged cutting-edge gene therapy as part of his medical preparations.
The CEO of Rocket Pharma met with Ndopu and has given him Rocket’s full support. Ndopu’s team of doctors has confirmed that he is physically strong enough to withstand the rigours of going to space.
His eyes light up. “So much of this is speculative, it’s never been done before. Stephen Hawking’s last wish was to go to space and I feel like I am picking up where he left off. He had begun zero-gravity training, he was well into his 70s with a more profound condition than mine.”
In a time where so much of the world is known and conquered, to be a man riding a rocket into the unknown is a rare honour. Asked about space training, which typically takes up to two years, Ndopu explains that he’s exempt from the normal requirements. Usually astronaut candidates must learn the basics of the space shuttle and the international space station, how to be part of a team flying a jet, and how to conduct experiments in space. They also take language classes so that they can communicate with Russian mission control while on the International Space Station.
“I’m going up there to give the 20minute speech of my life. If I never speak again, and I only have one message for the world, this is it.”
As for the ride, Elon Musk is the man. Ndopu has engaged with Musk’s office on whether or not he’s willing to pick up the most expensive hitchhiker of all time. Musk’s connection to South Africa and the fact that it’s the centenary of Nelson Mandela’s birth line up like a celestial phenomenon, like it’s written in the stars. He smiles.
“Mandela said it always seems impossible until it’s done.”
‘What does access to joy look like? Access to love? The ramp is not enough, I want the building’
’Stephen Hawking’s last wish was to go to space. I feel like I am picking up where he left off’