Raul Carranza’s voice hovers just above a whisper and he is unable to move on his own. Aides help translate his words.
His link to the rest of the world is his thumb, enabling him to type on his computer and navigate through everyday life using a pressure-sensitive clicker on his power wheelchair. His assistants are his lifeline.
A number of events, from illness, injury or tragedy, can derail a student’s education at any moment. Unforeseen circumstances can rip away an entire future. This is not about injury or illness preventing a student from pursuing higher education. It is California budget cuts shredding personal independence and survival.
A 22-year-old Southwestern College alumni, Carranza transferred to UCLA in 2010, and has been fighting an uphill battle with the state of California to receive the support he needs to continue his education and live independently. Muscular dystrophy, a progressive disease that may have depleted the muscles in his body, but not his mind or burning spirit.
Carranza’s caretakers are a lifeline to his education.
After his first semester, the unthinkable happened. California’s budget cuts slashed his nursing and assistant hours from 22-hours per day down to 11. Carranza’s fight with the state forced him to drop out of UCLA and move back into his parents’ home in Chula Vista. Fighting for survival his entire life, his combat against budget cuts threw him in the muddy trenches of bureaucracy. But surrender is not in Carranza’a vocabulary and never has been.
Doctors said Carranza would not live past 14. He was diagnosed with muscular dystrophy at age two, when his parents noticed his walking becoming more of a waddle.
“Obviously they were wrong,” said Carranza. “Basically my cells don’t make enough energy and the muscles atrophy over time. I’ve been in a wheelchair since I was four. I was actually one of the youngest people ever that got a motorized wheelchair. Because I was so young they made me pass a driving test.”
For a young person with a disability, moving away from home can often be the first step toward achieving independence. Most parents are nervous to let their children go off on their own, but that concern can be tenfold when their child has a disability.
“I’ve always wanted to live independently,” he said. “Moving a way from my family meant a lot to me, not because of them, but because independence was one of my goals.”
Carranza said he very much enjoyed attending school away from home. With assistance he was thriving at UCLA and was invited to join the psychology honors program.
“UCLA is great,” he said. “They actually had a bus that would pick me up from my dorm and take me to class. I know that this isn’t the best choice of words, but it made me feel normal.”
Services normally covered by Medi-Cal and In-Home Supportive Services have been greatly reduced by the state budget cuts. These services, offered to those who need them most, are generally used as a last resort to keep those with moderate to severe disabilities out of institutionalized care. In October 2010 Carranza was notified of the 50 percent cuts to his services. His family rushed to appeal the decision by the state, and in December 2010 Carranza was forced to move back home from UCLA. His education was put on hold.
His family’s insurance is responsible for a large portion of his health coverage at the moment, but he has been able to arrange payments of $500 per month out of pocket to ensure his 22-hours of care per day. That agreement, however, will only last until May. He is hoping his luck will last until June.
In October 2011 Carranza was asked by some politically-active friends to speak at an Occupy rally in San Diego, and through his assistants and a computerized translator his voice was heard. He made a video on YouTube explaining why he was one of the 99 percent, and his assistant Laura passed it around on Facebook. Organized by the Occupy San Diego Labor Solidarity Committee, Carranza put on another rally in February and a fundraiser at Balboa Park’s Centro Cultural de la Raza which generated more than $2,000 to ease some of the medical bills.
Carranza’s fight, however, is not just his own. His brother Paul also has muscular dystrophy and requires 24-hour care. Paul Carranza has already been informed that his nursing and assistant hours will be cut in September when he turns 21, leaving two working parents to struggle to find the funds to provide the care for their sons.
Carranza returned to SWC this semester as a computer science major, but recently dropped out due to the time and pressure of fighting the state of California.
“My goal is for the cuts not only to be stopped, but rolled back for everyone to get the healthcare they need,” he said. “And, in the process, to get the Medi-Cal decision overturned.”
Carranza said he is in this fight for the long haul. These budget cuts affect everyone, even those who may not even realize it.
“I know this may seem like this doesn’t affect them, but it does. The budget cuts are affecting everybody. Because the first thing the government is going to cut are education and social services. And we’re all in this together.”