Reaching for the stars, and beyond
Edward Ndopu's message to those struggling against narrowly defined expectations and limitations, especially children with disabilities, is to “dare to dream of a life that extends beyond limitations”.
23 August 2019 | Local News
“I think we need to recognise that as humanity we are probably going to be saved by the most vulnerable segments of society,” he told Namibian Sun this week.
The downtrodden, stigmatised, and marginalised “are going to change the trajectory of society” he says.
“It's going to be people who have lived with the experience of exclusion, who have been disenfranchised, who have been discriminated against - those are the people best equipped to provide leadership and to provide a vision for the planet and society.”
Ndopu, who was born the year Namibia gained its long-fought-for independence, warns: “We are not doing disenfranchised segments of society a favour by granting them a seat at the table. In fact, it is in our interest as society to do that.”
His message to those struggling against narrowly defined expectations and limitations, especially children with disabilities, is to “dare to dream of a life that extends beyond limitations. You are bigger and more expansive than the space you currently occupy”.
Born in Windhoek, he was diagnosed with a degenerative condition at an early age - spinal muscular atrophy - and doctors handed down a death sentence by saying he would not live beyond the age of five.
Now, he plans to celebrate his 30th birthday - alongside Namibia's 30th independence celebrations next year - as the first Namibian and person with a severe degenerative condition among the stars - stretching the boundaries of what is thought possible to its furthest reaches.
And once there, he will deliver a televised message to the world - millions upon millions of viewers - which he describes as his “love letter to the enduring power of the human spirit”.
This message will be shaped not only by the hurdles he has overcome as a person with a disability, but by his work over more than a decade as a disability justice activist and acclaimed humanitarian.
In essence, his message is a unifying call for an expanded definition of humanity that includes all groups of people “along the lines of gender, sexuality, disability, geographical diversity and more”.
It is aimed at incorporating the “voices and personal narratives of all people who don't feel completely validated by the world”.
The idea to travel to space is not just about the adventure and the feat of breaking through another barrier, it is aimed at grabbing the attention of humanity to make a powerful, meaningful statement to push for change in the “way we think about, talk about and look at people with different abilities”.
His mission to the stars has been endorsed by the UN, which has pledged its support to Ndopu, one of 17 global UN advocates for the Sustainable Development Goals recently appointed by UN secretary-general António Guterres.
He is also in talks with a number of aerospace companies and has signed an exclusive deal with MTV, who will document and broadcast his watershed adventure.
“Humanity is in the midst of an existential crisis. Climate change, rampant inequality, nationalism, gender inequality and structural violence are markers of this existential crisis. And the only way to emerge from this crisis is through existential defiance.”
Ndopu said this during a keynote address at the 5th session of the Children's Parliament of Namibia, which formed part of his brief visit to Namibia this week.
He defined existential defiance as a “means to use your life to advance humanity, to be in service of a vision that is bigger than you.”
Apart from his space plans, and selection as a UN advocate, the 29-year-old was the first African with a degenerative disability to graduate from the prestigious Oxford University in its 900-year history, with a Master's in Public Policy.
Ndopu was also named one of the 200 most influential young South Africans a few years ago, and worked with Amnesty International in Johannesburg, where he is based, and this year was invited to visit Rwanda as an ambassador for inclusive education representing a Nobel peace prize winning charity.
A deep-seated sense of urgency underpins all he does, stemming from his initial short life expectancy.
“I'll be 30 next year, so I've outlived myself now by 25 years. I've always lived with a sense of urgency, the idea that there is no time to wait.
“There is no time to play it small, there is no time to sort of go about the motions of everyday life. There is urgency for me to take up leadership and to push for the sort of change that I seek to see in the world.”
He says this sense of urgency driving him is “built into the mandate of the sustainable development goals. It's built into the mandate of addressing the triple burden of inequality, unemployment and poverty. These are critical issues that face both Namibia and the SADC region, Ndopu stressed, and the clock is ticking towards 2030.
While it may seem daunting, his life's trajectory is proof that “it can be done. I'm living a life that was never supposed to really happen”.
He hopes his life could become a compass to others, “a point of reference - as an example of what can be done”.
Ndopu says a “paradigm shift, and attitudinal change” is needed to address the wrongs and challenges the world faces.
This includes the way in which people with disabilities and others relegated to the margins are viewed by society as “second best”.
“People with disabilities are not just their disabilities. We need to recognise that people with disabilities are not a homogenous group. We are incredibly diverse.”
Children in particular should be given permission to be children.
“I think we need to accord children with disabilities the right to be children, the right to express their curiosity, their right to be able to navigate the world in the way that kids navigate the world. With big eyes, trying to explore their surroundings.”
He also has a message for those who create the enabling or disabling conditions against which many struggle against.
“To society, and to our leaders, I would say I think the time has come for us to really validate and recognise the full humanity of every human being.”
Ndopu says too often the burden and emphasis is placed on those at the receiving end of exclusion, and less attention is paid to those who are equipped to improve matters.
“You've got power, and social capital and social privilege. You have a voice. You need to use that voice, as leaders that is what you are charged with doing. So let's make the conditions easier, let's create conditions of possibility.”
I wrote my name
“I owe a huge debt of gratitude to my mother,” he says, who raised him and his siblings as a single mother in Windhoek.
“I am where I am today because she sacrificed her own life and gave up everything to ensure that I had access to basic education.”
He was seven when he told her he wanted to go to school.
He says she “hit the ground running”, saying she would do everything possible to get him into a school, despite the fact that there were “very few schools that wanted to take the risk of having a physically disabled child in the classroom at the time”.
Eventually, Van Rhyn Primary School in Windhoek decided to “take the risk and bet on me” despite the fact that it was “unheard of that a severely disabled kid could be in a school with others with no disabilities”.
On his first day, he was put in a class of children deemed as special needs. But, after he wrote his name – the only child who could do it in his class – he was transferred to regular class.
“They said as far as we are concerned there is no reason you should be segregated from the other kids. You are just as capable as the able-bodied kids here.”
And as the saying goes, the “rest is history”.