Victor Santiago Pineda stopped walking at age 5 and has used a breathing machine since secondary school. The specific cause of his muscle weakness remains undefined.
Seated in a high-tech wheelchair and wearing a ventilator, he said his recent appearance to young Armenians must have seemed to them as if “a Martian just landed.”
It’s true that none of the 14- to 18-year-olds he met had ever seen someone with a severe disability. But staff at the U.S. Embassy that sponsored him said “he was treated like a rock star.” It was the 57th country he has visited.
As a young man, Victor helped draft the United Nations’ Convention on the Rights of Persons with Disabilities before founding World ENABLED to help advance the human rights of young people with disabilities.
He said most young people “don’t consider disability to be something strange.” He often gets asked why he stopped walking and receives questions about his wheelchair.
“I like answering those questions because people are curious, and I want to tell them it’s OK to ask those questions,” he said.
But with the students he met in Armenia, he was surprised to hear questions like, “What’s your biggest goal in life? What is the biggest thing you fear? What is it like being married?”
“They were really asking about the spirit of my person, what is the spirit that drives my work, and things like that,” he said.
Besides demonstrating that disability is not a limitation, he tells parents and kids about techniques, tools and ways to make education available to everyone.
“The concept of reasonable accommodation is at the core of this,” he said. “The concept of nondiscrimination and equality” is what has fueled the disability rights movement, including the passage of the 1990 Americans With Disabilities Act.