Meet Dr. Victor Santiago Pineda, One Of The Youngest Delegates to Shape the UN-CRPD
The UN Convention for the Rights of Persons with Disabilities is almost 20 years old. For many young people with disabilities, it feels like it’s always been around—if they have heard about it at all. Sadly, many great advocates who shaped its early drafts have passed away. Yet, a very few are still alive. Among them was Dr. Victor Santiago Pineda, one of the youngest government delegates to help shape the UN-CRPD.
Growing up in segregation
Pineda was born in Caracas, Venezuela, and needed breathing support since birth. His parents decided to move to the US to ensure Victor receives an accurate and inclusive education. He says it was a difficult decision for his parents. Leaving their home country meant leaving behind family, friends, and stability. But it was the only way for them to provide the education young Victor deserved: one that acknowledged his abilities rather than his disability.
“I was denied access to regular schools because of my disability. The education system simply wasn’t designed to include disabled children,” he recalls. Before coming to the US, Pineda didn’t have the chance to attend a regular school. “The lack of inclusive education policies meant that disabled children like me were often left without formal schooling. We were placed in segregated settings that didn’t provide meaningful learning opportunities,” he says. This was probably one of the main reasons for becoming an activist at such a young age. “These early barriers I faced became the foundation for my life-long commitment to ensuring that disabled people everywhere have access to the opportunities and rights they deserve,” he explains.
Student years and early activism
After school, he studied ethnic studies at UC Berkeley. He helped resurrect the students’ union. Later, he became involved in various disability organizations while earning his doctoral degree in urban planning at the Luskin School for Public Affairs at UCLA.
Being part of a defining moment
“Getting involved in shaping the UN-CRPD was almost a coincidence. When I was 18, I met a gentleman at the local Shawarma place who looked confused. He had all these different currencies in his pocket. I asked if I could help him. He told me he was here for a private meeting of the United Nations. They were discussing whether the US should consider being part of developing an international human rights convention on the rights of persons with disabilities,” Pineda remembers. Suddenly, 18-year-old Pineda was sitting at a table with law scholars discussing the UN-CRPD.
That moment changed his life. Working with disability activists worldwide gave him a new understanding. He saw how essential the convention was on both social and legal levels. He recalls meeting diplomats from all over the world at the first proper meeting to discuss the UN-CRPD draft in 2003.
“I was lucky to be part of this historic moment. Two hundred or three hundred disabled people from all over the world came together to change how disability rights were understood,” Pineda recalls. He entered the building, which was full of diplomats, all 30 years older than him, smoking everywhere. “There were so many activists, such as Judy Hubert or Kelly Kokala, who in the ’70s and ’80s had tried changing things in their own countries. Now, they had come to New York as part of their own government delegation.”
Before that, only able-bodied diplomats were in the delegation. The chairman finally declared that every delegation must be led, or at least informed, by a disabled person. Pineda vividly remembers feeling like two very different worlds almost collided at first. “You know, diplomats are used to saying yes to everything and finding solutions. Suddenly, they were confronted with radical, blunt activists who just said things out loud and spoke up for their rights,” he says. “Diplomats were running around in suits, while activists dressed very differently. There was this Italian guy with grey hair wearing a disability pride T-shirt. These activists talked about legal gaps, discrimination, neglect, and abuse. They spoke about horrendous violations of human dignity.”
“Five years later, the convention was put into force. It was the most quickly adopted human rights treaty ever. This happened mostly because many disabled legal scholars from all around the world were able to weave together the concept of these 50 articles,” Victor remembers.
The Victor Pineda Foundation
All of these events and lived experiences showed him how important education is for people in general. It is especially important for disabled people. So he founded the Victor Pineda Foundation. This educational organization promotes the dignity and rights of young people with disabilities. He says the contrast between countries that prioritize inclusive education and those that don’t remains a major focus of disability rights advocacy. That is why it remains one of his personal priorities.
The empowerment of people with disabilities in shaping AI
And he just kept going. In 2024, Pineda became Executive Director of the Center for Independent Living in Berkeley. Now, he is researching how AI can be incorporated into disabled people’s lives without eroding their identities.
“Look, we were undoubtedly there from the beginning as disabled people. Text-to-speech and voice recognition were AI. Even before Stephen Hawking started writing his book, he used AI to develop word-prediction tools. Out of word prediction, ChatGPT was developed. So invention and disability are the mother necessity,” Pineda says. He thinks disabled people have a connection to the world that inevitably creates technical advances. Yet, the world often fails to recognize the central role that disabled invention played in developing these technologies that non-disabled people take for granted. “Now the question is: as these technologies have spread all over the world, how do the algorithms qualify the disabled experience viewpoint within a sea of ableist content? How do we have a level of dignity that doesn’t erase our experience with this average wave of variables, but protects our disability pride?”
This focus on empowerment leads to one guiding principle: autonomy is key to empowerment.
Empowering disabled people is one of Victor Pineda’s main priorities at the Center for Independent Living. According to him, disabled people have to become part of everything. From everyday activities such as shopping and pastimes to essential issues such as housing, banking, and business. Very often, he says, disabled people are excluded because of the wrong assumption that they are a minority. But they aren’t, he says. They are everywhere, and by empowering them to shape society, they will break the barriers that were made by a world that wasn’t designed for people with disabilities.
If there is one thing Pineda hopes for, it is that young disabled people never stop the fight. He and other activists have kept up this struggle for years. This fight has changed political and social structures worldwide for the better. But it is by far not over, and probably never will be.
