He wasn’t expected to be alive today. In fact, doctors told his mother that he’d be lucky to live to his fifth birthday. But, Eddie Ndopu said being born with a disability fueled his fight to live, and his drive to become one of the world’s leading disability justice advocates.
"I think the honest answer is I was left with no choice...I think my advocacy was really informed by my own lived experience," said Ndopu.
Ndopu is from South Africa. He was just a child when he was diagnosed with a devastating disease.
"At the age of two, I was diagnosed with spinal muscular atrophy," said Ndopu. It results in progressive weakness in the body's muscles. "The older I get, the weaker I become, and so I have really outlived myself by 26, 27 years."
He's now 31.
Needing to use a wheelchair didn’t stop him. He received an undergraduate degree in Canada, and then a Masters in Public Policy from Oxford. He says along the way, he discovered his calling in life.
"When I started mainstream education at the age of seven, I was the only visibly disabled person in the classroom. I'm still often the only visibly disabled person in many rooms."
He realized he needed to stand up for his needs, and that he could also do that for others.
Ndopu is a United Nations Global Changemaker, fighting for the rights of those with disabilities around the world. He’s speaking at UC Santa Barbara Thursday night, in a free public event. Ndopu said many people with disabilities around the world are struggling to get access to basic things like an education.
But, Ndopu said some of those with disabilities are also facing issues in industrialized countries like the United States. He said one example is that people with disabilities can lose some of their financial support if they get married.
The disability rights advocate has written a new book about his life, called Sipping Dom Pérignon Through a Straw: Reimagining Success as a Disabled Achiever.
Ndopu will speak at UC Santa Barbara’s Campbell Hall at 7:30 p.m. Thursday night.
The UCSB Arts and Lectures event is free, and open to the public. There a limited number of his books which will be available for free on a first-come, first served basis.
