March 3, 2018
Laura Tellado received a letter from The Oprah Winfrey Show at age eleven. The letter informed her that the popular television program would not accommodate her desire for them to produce an episode covering spina bifida. It was just one of many in a series of impersonal rejections—if she received a response at all—from many of her favorite celebrities, politicians, and public officials.
“I would write to them and say ‘you could be covering this, or you could be talking about this. It’s an issue that needs attention…’ I wanted to bring it out of the shadows,” Laura says.
More common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined, spina bifida occurs when the spine and spinal cord don’t develop properly in the womb; it’s also the number one cause of paralysis of children in America. The physical condition ranges in its severity from mild to severe—some people require a wheelchair full time while others are quite mobile—and often presents with secondary conditions, such as clinical depression, bladder and bowel issues, and hydrocephalus. Spina bifida occurs in nearly 1,500 children born each year worldwide, and a little over thirty-one years ago, Laura Tellado was one of those children.
Today, Laura—or “Laurita,” as she’s lovingly known by most—talks openly about her own experiences, helps to raise awareness in the medical and mental health communities, and supports those with the condition who are most in need. She also speaks on panels, attends relevant medical conferences, and participates actively on social media, sharing information about spina bifida and fielding questions from concerned parents.
But Laurita hasn’t always been so outspoken. Growing up, she struggled to navigate a childhood made complicated by her condition.
“I realized on a societal level that people perceived me as ‘different’ from a very young age,” says Laurita. After moving with her parents from Puerto Rico to Orlando at age three, Laurita started attending a program for children with physical disabilities. Although her first language was Spanish, which she speaks at home with her family, Laurita picked up English shortly after moving to Florida, thanks to many days spent absorbing Sesame Street. When it became clear after a few years that Laurita’s reading and writing abilities matched those of other children her age, her parents enrolled her in a public, mainstream elementary school.
“The teasing and bullying really began there,” Laurita admits. Kids teased her with words like “crippled” and “retarded” to her face, often excluding her during playtime or recess. In middle school, invitations to other girls’ birthday parties bypassed Laurita, and in high school, she’d often hear the same slurs from elementary school behind her back.
To deal with the social isolation, Laurita often turned inward, to writing, to help communicate her feelings. In addition to her numerous solicitation letters, Laurita also began entering essay contests at her school. She describes a second-place finish as a 10-year-old as a “lightbulb moment,” when she understood that with awareness could come tolerance and acceptance.
“I realized maybe the kids before just didn’t get me, and now,” having shared her story with them, “maybe they did.”
With encouragement from her parents, Laurita also started volunteering, and her work with the Spina Bifida Association of Central Florida and New Hope for Kids strengthened her innate passion for activism. At the age of 22, Laurita was elected to the board of the Spina Bifida Association of Central Florida, the youngest member at the time, and one of very few with spina bifida to serve.
“[My parents] passed on this interest in social good and just helping each other out. My mom was a school volunteer from preschool to the day I graduated high school, and both my parents were very involved in volunteer work with the spina bifida community. I was very much raised with the idea that gestures like that can make a difference,” says Laurita.
Laurita’s passion for raising awareness eventually melded with her affinity for writing, giving birth to her blog Holdin’ Out For A Hero in 2009, where she’s since written in detail about her own struggles with spina bifida. In 2014, Laurita reached another personal goal when she founded The Laurita Spina Bifida Project (The LSB Project), a nonprofit that she’d dreamed of starting since age eleven. Laurita runs it primarily from her kitchen counter, operating social media accounts in its name, answering emails, and planning fundraisers. And while she admits that she doesn’t know every single spina bifida foundation in the world (“I wish I did!”), hers is the only one, to her knowledge, founded by an individual with the condition.
One of Laurita’s most formidable memories as an activist and fundraiser comes from an email she received in 2011. A physical therapist in Uganda reached out to her to share his challenges assessing and treating children with spina bifida and hydrocephalus, a common secondary condition of spina bifida where fluids build up in the brain. With limited resources, children with spina bifida in his community were often left helpless, sitting on dirt floors without wheelchairs, or forced to stay home from school because of mobility issues or social stigma. The physical therapist had a lofty request for Laurita: could she come to their area and help them?
“I remember just crying at my laptop, and I told my parents, I said, ‘Mami, I wanna go, I wanna do this.’” But Laurita hadn’t the time nor money to visit or help in the ways she’d have liked.
Shortly after, Laurita started receiving similar requests from people in places like Kenya, South Africa, and Tanzania. These worldwide calls for support were the impetus behind The LSB Project’s latest, and perhaps most meaningful, campaign to-date. During the 2016 holiday season, Laurita and her supporters raised $1,000 for the Association for Spina Bifida and Hydrocephalus Tanzania (ASBAHT). With that money, the recipients were able to buy wheelchairs, crutches, and other orthopedic equipment, including medication for a young girl with hydrocephalus. Seemingly small victories, these improvements would drastically improve the lives of the otherwise housebound children.
“It’s amazing that you can be sitting in the comfort of your own home, raising funds on an online platform, and suddenly you’re wiring money to a country in Africa. It’s amazing to see the immediate impact. It gives me perspective on how I live, how lucky and blessed I’ve been, but it also makes me aware that we still have work to do. A lot of work to do.”
One day, Laurita hopes to be able to visit all the countries and the people who’ve reached out to her for help and guidance.
“I want them to see that we care about them, that we may live all the way over in the U.S., but we care about you, and we can relate to you.”
And yet, as proud of her work as she is, Laurita admits that her drive for civic duty can sometimes wear on her, and in a “quest to find balance,” Laurita has also channeled her affinity for writing into a second blog, Espresso Con Leche. She often writes in English or Spanish, or both if she has the time to translate, and uses the blog equally to entertain and to explore what it means to her to be a Latina in America. It’s her attempt to both embrace her heritage and to define herself as more than just the condition she lives with and works eagerly on behalf of. She writes about Latin food and music, local attractions like Disney World, and even her international travels, including several visits to Puerto Rico. One of her most recent posts describes her visit to the island, where she was visiting family when Hurricane Irma hit. After Irma, she and her family waited hopefully for a flight out of San Juan, knowing Hurricane Maria would reach the island within a matter of days. They just made it out.
“That visit was particularly special to me because it’s the last memories I have of experiencing Puerto Rico before everything seemed to change.”
So what does Laurita Tellado, the strong-willed American Latina and proud tri-founder of Holdin’ Out For A Hero, Espresso Con Leche, and The Laurita Spina Bifida Project, hope for the future of her condition? As of today, there is no cure for spina bifida, but Laurita remains optimistic, hoping that small advances could one day lead to better medical treatment and quality of life.
“Ten years ago, I hadn’t even heard of fetal surgery, which is where you can correct the opening in the spine in utero. It’s not a cure, but it’s something that lessens the effects of spina bifida … and when my parents had me thirty-one years ago, they hadn’t even heard of folic acid or prenatal vitamins yet,” which research suggests could help prevent spina bifida in utero.
She also hopes that a better understanding of the secondary conditions of spina bifida, and how to best treat them, will surface in time.
“I would love to see a treatment for hydrocephalus that doesn’t involve invasive brain surgery. I’d love to see a cure for neurogenic bladder. I would love to see a bigger discussion, a more frank discussion, around depression and mental illness.”
Ultimately, Laurita’s greatest hope is that those with spina bifida are seen and treated as valuable members of society. That they’re seen as different in the ways that all of us are different, whether by our race, ethnicity, sexuality, disability, or any of the infinite and subtle ways in which all of us are defined.
“Until society completely accepts us, I don’t think we’ll be ready to address all the underlying issues of spina bifida, like mental illness and equality in the workplace. I want people to understand that we too like to hang out with our friends, we like to go to parties, we like to drink, we go to the movies, we date, we work. We’re just like you.”