“When gravity no longer has a hold on our bodies, in that moment we will all be the same.”
Eddie Ndopu, 28, was speaking about his dream of becoming the first disabled person to travel into space in 2019.
The South African wants to beam into the United Nations general assembly on December 3 next year – the International Day of Persons with Disabilities – to address world leaders on behalf of young people everywhere who have ever felt excluded by society. MTV announced on Thursday it is planning to film his attempts to enlist a company to facilitate the 20-minute commercial flight into space, and the journey that will follow.
“Regardless of who you are, where you are or what you are, you are capable of achieving anything. There needs to be a shift in people’s mindsets about disabilities,” Ndopu told Times Select.
“The message is you can have a disability and live a full life too – and space is the biggest stage I can get to advocate on.”
Ndopu is living with spinal muscular atrophy, a motor neuron condition affecting the voluntary muscles, resulting in progressive weakness.
Diagnosed at the age of two, he was never expected to live past five years.
“I have outlived myself, but I know that I am living on borrowed time.”
Ndopu has been advocating for people with disabilities for more than a decade and has a master’s degree in public policy from Oxford University.
“For me disability is about interpretation – we are all different and that is not a negative thing. It is a form of diversity. I am advocating not just for accessibility in terms of ease of movement and travel, but it’s about wanting access to love, joy and happiness too.”
Ndopu said he was still unsure who he would travel to space with.
“I want to work with Richard Branson [Virgin Galactic] because he is a humanitarian and an amazing person.
“Jeff Bezos [Blue Origin] is also a new player in the space game and strategically we could work together; it may be good for his campaign to launch as disabled friendly.
“Then there is [Elon] Musk [SpaceX] who is a South African so there is a connection there too.”
Ndopu said the space race, to see which company would be the first to offer commercial trips to space, had so far not included or mentioned disabled persons, and he wanted to change that.
“For me space is emancipation – we are all more or less the same when we are up there and we are no longer constricted to our bodies. “My work has always been to challenge the status quo. I want to defy gravity. The image I want to capture is me finally lifting out of my wheelchair. Space is the metaphor.
Although it was Stephen Hawking’s last wish to go to space, Ndopu’s role model is Frida Kahlo.
“She identified as a disabled woman. When she was told she was too ill to go to her first exhibition in her home country [Mexico], instead of staying in bed at home she was brought to the exhibition in her bed. She said to the doctor: ‘I promised I would not leave my bed’.
“I get emotional when I think about that because I know if I believed the aspirations and predictions other people had cast over my life, I would not be here today.
“Behind all the statistics of people living with disability are real people, and my message [to the UN] is we need to accord everyone with the same shot in life.”
The Sunday Times reported earlier this year that Phumzile Mlambo-Ngcuka, 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.
He also enjoys the support of the spinal muscular dystrophy medical fraternity, and a pharmaceutical company, Rocket Pharma, which has pledged cutting-edge gene therapy as part of his medical preparations. Ndopu’s team of doctors told the Sunday Times he was physically strong enough to withstand the rigours of going to space.
Ndopu said he was living on borrowed time.
“I think about it a lot. I do want a greater quality of life. What I have now is degenerative. Ten years ago I wanted to be a fashion designer – I was about to submit my drawings to a school overseas – but I am weaker than I was then and I have less mobility; I cannot draw.
“I know I am living on borrowed time so I have to be quick when perusing my goals. There is no time for a partner or for children. But I think some people just belong to the world. I wouldn’t want to change my position for anything.”..