Disability Activist with SMA is a Globe Trotter

Life has been a whirlwind of activity for Victor Pineda lately.  The 31-year-old bachelor got married the first week in July.  He earns his Ph.D. in government planning around the first of August.

But these momentous events are almost insignificant compared to the rest of his typical schedule. In 2005 Pineda created the Victor Pineda Foundation (VPF) and today it commands most of his time.

VPF is an educational nonprofit that “promotes the rights and dignities of young people with disabilities worldwide.” The organization seeks “an inclusive human and civil rights approach to disability programs and policies” and provides educational and training materials to governments and nongovernmental organizations working in education, human rights, research and the arts.

“I wanted to focus on youth because young people can change their own perspectives and steer their lives toward changing their own communities,” Pineda said. “The Foundation looks at not only the human rights aspect but also the economic development side.

“Governments can give you rights on paper, but if the infrastructure isn’t there, people with disabilities will still be marginalized.”

Starting young

Pineda, who was born in Caracas, Venezuela, moved with his family to Southern California when he was 7, shortly after doctors identified that he had type 2 spinal muscular atrophy. In California, his family connected with MDA and Pineda regularly attended MDA summer camp.

As he grew, Pineda increasingly directed his energies  toward two goals: gaining an education and removing physical and regulatory obstacles facing people with disabilities.

“I had first-hand experience with the barriers that challenge disabled people in other countries, and I wanted to change that. I realized early on that getting a solid education would be essential in bringing about that change,” he said.

Education came in the form of bachelor’s degrees in political economy and business administration, followed by a master’s in city and regional planning, all earned at the University of California, Berkeley.  His upcoming doctorate will be from University of California, Los Angeles, near where Pineda now lives.

From his dorm to the world

As a student, Pineda immersed himself in what he knew was to be his life’s work.

“I really started my career out of my dorm room when I was 17 or 18,” he said. “I was being exposed to what advocacy and civil rights really meant, and that exposure ignited my interest in the societal factors that can create justice and ensure human rights.”

Because of his interest in civil rights, Pineda was appointed an advisor to the National Council on Disability when he was only a junior in college. He emerged as one of the young leaders of the international disability rights movement when he served as the youngest delegate to help negotiate the United Nations Convention on the Rights of People with Disabilities, which has been signed by 145 nations.

Pineda’s international involvement led to opportunities closer to home, and he served as an advisor to the California Health Improvement Incentive Program that was designed to eliminate barriers to employment for people with disabilities.

Gathering personal stories of disability

In 2003, Pineda founded the Disability Media Center (DMC) in California, starting with a project that linked news media professionals with young people with disabilities in a filmmaking vocational training program. Pineda’s goal was to engage participants not only with the mechanical tools and methods, but also with the subject of disability rights.

With lessons learned from that project, the DMC went on to join forces with the It’s Our Story National Media and History Project, which is working to gather a comprehensive collection of testimonies about “what it was like, is like and should be like to live with a disability.”

That project’s goal is to create an online database that will allow users to easily search thousands of pages of documents and thousands of hours of video to find personal stories of how people with disabilities have fared and coped in the communities in which they live.

The database will include a free online video editing program so users can become storytellers by linking videos, photographs and documents that relate the full breadth of their personal experiences.

Not slowing down

Pineda has produced video documentaries about challenges to people with disabilities in other countries, and he’s testified before the US Department of Justice, the World Bank, the United Nations and the governments of half a dozen countries.  

At home or while traveling, he uses a bilevel positive airway pressure device (BiPAP by Respironics) to aid with breathing and relies on a wheelchair for mobility. When he wants to go somewhere that’s wheelchair-inaccessible, he arranges for someone to just pick him up and carry him.

Until his marriage, Pineda lived on his own with assistance from caregivers in the morning and evening. Now he has added help from his wife.

In 2006, Pineda was recognized with the prestigious Jefferson Award for Public Service (past recipients include Bill and Melinda Gates) for his lifelong efforts promoting equal rights. It’s only one of many honors he’s received, and while it’s nice, it’s not a laurel on which he’s going to rest.

This man has work to do.


Watch a short documentary about Pineda's visit to a United Nations refugee camp in the Republic of Yemen

 

Disease: 
Link: 
GUID: 
15 861
Time Stamp: 
1 279 110 137
Thumbnail: 
http://quest.mda.org/sites/default/files/imagecache/mda_org_frontpage100x75/Victor_Pineda.jpg
Node Type: 
Quest News