Sarah Funes is a 27-year-old disabled Californian of Chinese, Latino and Indigenous heritage, and she’s here with a message: do not underestimate children with disabilities; they will grow up and vote and become active and full members in society. And they will remember.
“I think people think that disabled kids are so cute,” she told Latino Rebels. “You see the disabled kid at the mall with their family and say ‘oh, that’s cute,’ and then people just forget.”
Funes’ comment arrives as the Trump Administration moves forward in an attempt to invalidate the Affordable Care Act (ACA), and as a group of Republican state attorney generals try to have the law, also known as Obamacare, repealed. The case could land in the Supreme Court for a third time (the first time was in 2012, second in 2015).
She told her story to Latino Rebels because she said there was an absence of Latino voices with disabilities in mainstream media. She argued Latino issues are usually —and mistakenly— perceived to be separate from disability issues.
“That’s not true. Our needs are everyone’s needs” she said.
Funes’ life would have been completely different were it not for the ACA and the Americans with Disabilities Act, or ADA, which was passed in 1990, a year before Funes was born.
“I’ve accomplished everything I have in my life because of the ADA. Without accommodations in my classes from 6th through 12th grades, community college, and at my current four-year university, I would not have my present reality that is full of hope not fear. I’ve had incredible opportunities to have my voice heard at all levels of the government, which have included statewide campaigns, federal grants, higher education work groups, nonprofits, and my current internship with U.S. Senator Barbara Boxer,” she wrote in a testimony for the Institute for Educational Leadership or IEL.
Funes was born in Redwood City, California. Her great-great-grandfather came from China to San Francisco and help builded the railroad before he moved to Mexico, then Honduras and finally El Salvador. Her great-grandmother, on the other hand, was taken from her village in El Salvador when she was 16, birthing 12 children after that. Funes’ grandmother was the youngest of the 12. “That is the narrative my family tells,” Funes said, “so half of my family looks completely Chinese and the other half looks Latin.”
Her life changed forever at the age of 10, when she was diagnosed with a brain tumor in three parts of her brain, touching her brainstem. Doctors told her there were two possible outcomes should she decide to undergo surgery: either she would die on the operating table or she would survive but be paralyzed for life.
“My mom asked me, ‘do you want to have the surgery, even with all the risks?” Funes recounted. In that moment, she was 12 years old and did not want to live in pain anymore, so she said yes. “My grandfather, before he died, told me that she [Funes’ mother] called him crying all the time wondering ‘what if I kill my daughter because I let her make the choice?”
Funes walked out of the hospital on her own two feet, she said. It’s a truth based on a technicality: she was wheeled to the hospital entrance, teetered across the entrance doors to the exterior, then fell back into a wheelchair.
Fifteen years later, Funes is alive, well and thriving. Life since that moment has been different though.
She explained that she could no longer play basketball, volleyball, ride horses, dance or do archery. The cancer and the follow-up from the surgery debilitated the left side of her body. Since she couldn’t be an athlete anymore, she said she decided she’d use her mental strength “to make a difference.”
Funes said that Medicaid has been an integral part of her recovery and reinsertion into society as an independent teenager and later as an adult. Soon after learning about the cancer, her mother lost her job as an accountant, and the family’s health insurance. Her mother then picked up a job as a TSA screener at the San Francisco Airport because it was part-time and offered benefits. They were also on a Medicaid program called Healthy Families (which transitioned to the Medi-Cal Program in January 1, 2013).
While Funes pursued her undergraduate degree at Berkeley in Political Science, she was able to get by thanks to the Supplemental Security Income, or SSI, which she qualified for from the Social Security Administration.
She currently lives with her boyfriend at Stanford, has two associate degrees from community college besides the Berkeley degree, works at a tech company and stays civically involved by registering people to vote and by trying to change the perception in her community where she says people don’t consider disabled people as voters and as “shakers.”
“I chose when I was a teenager to be open about my disability because I didn’t want people to feel alone and now there’s no way I can go back and hide the fact that I have a brain tumor to the public. That’s just public knowledge,” she said.
“And so I live my life knowing that if this Republican Congress wants to dismantle the ACA, then they’re going to be a lot of pissed-off disabled people who are going to fight like hell to save it. And then if [Trump] gets rid of it, we’ll fight until we vote him out.”
Emily Corona is a digital intern at Futuro Media. She is a journalist and translator from Mexico City, pursuing a master’s in journalism and Latin American and Caribbean studies at NYU. She tweets from @daminijo.