CHAPTER TEN
LITTLE LEGS, BIG DREAMS
Mafalda Gueta, twenty-three
Guadalajara, Jalisco/Riverside, California
IN 1994, THE YEAR the Zapatista Army of National Liberation (EZLN) rose up in Mexico, the North American Free Trade Agreement (NAFTA) went into effect, and a Mexican presidential candidate was assassinated, Carlos and María Esther Gueta became the proud parents of twins, a boy and a girl they named Sebastian and Mafalda. As soon as they were born, Sebastian had to be treated for a congenital heart defect that impeded the flow of oxygen to his lungs. When the little boy had almost recovered from the surgery, the Guetas found that his sister also needed medical attention.
“When I was born, the doctors told my parents I would never be able to walk, or stand, or sit up,” said Mafalda, “[that] I would be lying down my whole life.”
Mafalda is short, with an oval-shaped face, brown hair, and an infectious smile. She looks like her father. She had long hair when I first met her. It was May 2015, and the University of California at Riverside (UCR), which Mafalda attended, was holding a banquet to raise funds for scholarships for undocumented students. Mafalda was the master of ceremonies. Wearing a white dress, black sweater, and Doc Martens boots, with a self-assured smile, she walked across the stage and proceeded to talk about her classmates and the struggle all undocumented students have to go through just to graduate. The crowd applauded, moved by her words.
In recent photos on social media, Mafalda has a radiant smile and is dressed in a graduation cap and gown. On her Facebook page, Mafalda describes herself as having “little legs, big dreams.”
Mafalda had sacral agenesis, a rare condition that meant she was born without a sacrum, or lower spine. It not only affected her ability to move, stand, and walk; it also affected her internal organs, including the development of her bladder and intestines.
When the doctors gave them the diagnosis, Mafalda’s parents started researching all the treatment options available, but there were none for children with this condition in Guadalajara, where they lived, or anywhere else in Mexico. (This was before the Children’s Rehabilitation Centers, part of the Fundación Teletón, existed in Mexico, which now provide treatment for similar conditions.) At the time, Mafalda’s maternal grandparents and an aunt lived in the United States. Mafalda’s uncle found out about Shriners Hospital, which specialized in treating children with burns and spinal issues. Mafalda’s mother immediately made an appointment for a consultation, and there the hospital told Mafalda’s parents that surgery and further treatments were possible.
When the doctors at Shriners Hospital explained what the course of treatment would most likely be—several years of surgeries and follow-up consultations—Carlos and María Esther made the decision that any parent in the same circumstances probably would have made. They quit their jobs—he worked at a travel agency, and she worked for an airline, which was how they met—sold their house, withdrew the little savings they had left after Sebastian’s and Mafalda’s medical bills, and moved to Alta Loma, California, where their relatives lived. They arrived there in November 1995, just before Thanksgiving, on tourist visas. Mafalda and Sebastian were just one year old.
María Esther started working cleaning houses and did this for three years. It took Carlos a bit longer to find work, but he eventually landed a job at a travel agency. Mafalda started her medical treatment. At the same time, they tried to legalize their immigration status. María Esther’s father was a US permanent resident and could petition for his daughter.
In 1995, María began the process of applying for legal residency, under the guidance of a Catholic organization that provided advice. To speed up the application, the organization suggested that María Esther say she was “single” on her application. Later, it would discover that was very bad advice: since she had entered the US on a visa stamped into her passport, and her passport said she was married, claiming she was single meant she had lied on her immigration application. Lying on the application is considered a federal crime. The Guetas then realized there was no way for them to legalize their status, at least not at that time.
By then Mafalda was receiving excellent medical care, with a greater chance of being able to walk one day. Shriners Hospital offers its services free of charge, regardless of a patient’s or family’s immigration status, to children from birth until the age of eighteen.1 Mafalda had undergone her first surgery when she was two years old. By the time she was three, she had taken her first steps. There was a real likelihood that she would be able to walk if she kept up with the treatment protocol, so the family decided to remain in the United States, even though they would be undocumented.
When Mafalda was five years old, she underwent a completely innovative surgical procedure with a tongue twister of a name, appendicovesicostomy, also known as the Mitrofanoff procedure, in which a patient’s appendix is used to create a conduit from the bladder to the skin’s surface on the abdomen. For Mafalda, who had had to use a catheter to empty her bladder, because she could not control the muscles regulating urination, the conduit connecting her bladder to an exit point near her belly button changed her life, and the catheters were history.
“This procedure was totally new to many doctors. Shriners was doing things that were changing everybody’s lives,” Mafalda explained to me when we talked in 2017, a few days before she graduated from college. She spoke quickly and passionately. Emotion rose in her voice when she talked about the part her parents played in this process.
The Guetas had obviously come to the right place to address Mafalda’s physical condition. But as her treatment progressed, there were some problems in terms of her social development. When their daughter reached school age, Carlos and Esther decided to send her to a special school for disabled students, with staff trained in how to work with and support children with conditions like Mafalda’s. Later on, though, they decided Mafalda should be in a mainstream environment, which she would have to navigate for the rest of her life. At seven years old, Mafalda was enrolled in a general-education public school, and that was very hard for her.
Accustomed to being treated no differently from anyone else, Mafalda suddenly found herself in a place where the teachers did not know how to manage a student like her, and they had no training to help them deal with the mental and emotional effects of working with a disabled child. As a result, Mafalda’s mother often had to intervene on her behalf. Once, when Mafalda had to empty her bladder—something she could not do in the same way as all the other students—the school nurse refused to help her, because she did not know how.
“I could not do it on my own, and she refused, and by refusing she was putting me in danger. My mom was really mad. She talked to the principal and the superintendent. She made everyone make adjustments and made sure the nurse and my teachers knew how to manage my situation. After that, the nurse was usually really nice to me. You don’t know what goes on in the adult world, and I don’t remember that much about how things got done, but my mom was like that; she acted like a mom. She literally left her country so that I could get the care I needed. When it was necessary she fought with doctors, with teachers; whatever she had to do, she did it. The nurses thought she was really aggressive,” Mafalda remembers with a laugh. “She thought since she only spoke Spanish they were going to take advantage of her. My mom is really sweet, but if you mess with her kids, watch out.”
Later Mafalda would make clear that did not mean her mother was overprotective, a natural response for anyone who loved her. Her grandparents, for example, were always saying, “Mafalda shouldn’t do that.” She remembers once her mother asking her to wash the dishes, and her grandparents said she shouldn’t do that. María Esther responded, “Why not?”
“I think my disability could have been a weakness, but my mom turned it into a strength,” Mafalda says. “She never made me feel like a weak person, because she knew someday I would have to do things for myself. My parents always pushed me to be independent. Some people want to help you because they care about you, but that help can sometimes make you too dependent. She didn’t allow that, and that helped me to be a leader, because she pushed me to do things that were hard, even if it took me a long time. It’s more work for me to do some things because of my disability, but I don’t let myself think it will be difficult.”
For the past two years I have kept in contact with Mafalda and her family through social media. Seeing the personal stories and events they share, it is easy to understand the ties that bind the Gueta family. Mafalda’s father, Carlos, likes to post about the accomplishments and daily lives of his three children, the twins and their little sister, Enola, who is now fourteen. Music lover that he is, Carlos goes to lots of concerts—one of the advantages of living in the Los Angeles area—and often brings Mafalda along. A few weeks before my conversation with her, the whole family had gone to see the folk-punk band Violent Femmes.
“I’m very proud of my relationship with [my family],” Mafalda says. “They have always been close to us [kids], wanting to know what things we like, to understand us. How many moms do you know like anime?” Mafalda says, clearly touched by her mother’s interest. “They’ve taught us how to keep ourselves safe and take care of ourselves; we don’t hide things from them. My dad took me to my first concert when I was eleven. We went to see Green Day. We’re friends on Facebook and connect through music and art. With my mom, it’s anime and books. They are very modern and decided to grow along with us, so we have a friendship.”
Her close family bond has no doubt been an important support for Mafalda during the difficult times in her treatment, and there have been many. Over the course of her twenty-three years, she has undergone thirteen surgeries, some with long recovery periods. When she was in kindergarten, Mafalda missed three months of school because of a surgery, and she missed three months again in fourth grade. Most of the surgeries were performed in her childhood years, because the main “problem” she faced was that she was still growing, and as long as she was growing, adjustments had to be made to her bone structure. She remembers one surgery made a chronic limp even worse. The medical team discovered that as her body had developed, one of her feet had grown in the wrong direction. They had to do an additional surgery to rotate her tibia.
“But once you stop growing, it’s no longer a problem,” Mafalda tells me happily. “I have lived alone, on my own, for three years now. I can say my parents did all they could to give us the best.”
Norma speaks softly, almost in a whisper. At eighteen, she sounds like she doesn’t want to call any attention to herself. She goes to school, works, and tries to live her life like any other young person her age; but she always has a dark shadow of fear over her. If her friends do anything that might attract the attention of the police, she gets nervous. She avoids going to certain areas and doing certain things. Norma is undocumented, and for as long as she can remember, she has lived with the knowledge that at any moment she could be identified by authorities, arrested, and deported.
This is the daily reality for the eleven million undocumented people living in the United States. It has an especially strong impact on young people whose options are severely limited at a critical juncture in their lives: they reach legal adulthood at eighteen, and as they try to plan for their futures, they find that every decision they make—going to school, working, traveling, driving a car—is limited because of their undocumented status.
In response to the hard reality thousands of young people in their communities faced, in 2015—the year I met Mafalda—a group of young researchers carried out a study entitled “Undocumented and Uninsured” to determine how the constant worry caused by their undocumented status takes a toll on the physical and mental health of undocumented youth. The results were enlightening: seven out of every ten study participants lack access to health care, although the same number say they need it. Of those who have an illness or a condition, half said they do not go to the doctor because they do not have health insurance, or for fear of being questioned about their immigration status. Six of every ten said they use the internet as an alternative, to try to find information on how to self-treat their conditions.
To carry out the study, thirty-four researchers, under the direction of three coordinators of the Healthy California project, part of the Dream Resource Center at UCLA, interviewed 550 young adults between the ages of eighteen and thirty-two in the state of California. To get precise results, interviewees had to meet one condition: they had to be undocumented at the time, or they had to have been undocumented at some point in their lives.2
“What we find is that our situation has not changed in recent years,” Alma Leyva, one of the study’s coordinators, told me. “Even though some people are recipients of DACA, we still see that policies of policing, of vigilance, continue to shape our lives. People live their lives avoiding things out of fear of deportation, and that is reflected in health care.”
Leyva stresses that young undocumented people in the United States do not seek medical attention for fear of being identified as undocumented, even if they are suffering from chronic pain or easily treatable illnesses. Often the pain and discomfort caused by these illnesses is not serious, but it can be chronic. The lack of attention over time can lead to more advanced conditions that will require more complex treatment. Little aches and pains are treated with home remedies. Preventative medicine is not commonly practiced. When symptoms worsen, those affected wind up in the emergency room, leaving with huge medical bills because they lack health insurance or other health-care coverage. Cases of families finding a hospital or medical program that will provide long-term treatment at little or no cost, without having to prove US residency, like the Gueta family, are few and far between. Data on undocumented youth in general put people like Mafalda in an exceptional category.
When I ask Norma when she had last been to a doctor, she cannot answer. She pauses and tries hard to remember when it might have been.
“Honestly, I don’t remember,” she says. “Maybe when I was five or six and I had to get vaccinated for school. I’m grateful I’m not sick, but I do have a lot of stress, and I think that’s why I get headaches. I think it also has to do with not eating very much from all the pressure at school and my job. Then I feel dizzy or my head hurts, and I take a pill or try to find some kind of medicine on my own.”
Norma is twenty-one, and in many respects her life has been similar to Mafalda’s. Her family, also from Guadalajara, came to the United States when she was three years old. She still has not been able to legalize her status. Since Norma is a DACA recipient, she can pay lower tuition rates and not the extravagant rates charged to foreigners who cannot show legal residency or citizenship in the US.
“But it’s not just the money. You’ll always have this fear that all of a sudden they could take away what they’re giving you,” she explains. “Now, the laws allow me to go to school, but that could change at any time, and not knowing if I’ll be able to finish my degree causes me a lot of stress. It’s a stress that gets added on to all the other everyday stresses, when something could go wrong. If my friends are doing something weird that could raise suspicions, and a police officer comes along and questions us, they might get a ticket or something, but I could get deported to Mexico. It’s a tension that’s always with me.”
Norma is not the only one living with this tension. The UCLA study found that 83 percent of those interviewed acknowledged that they “auto-monitor” during the day to avoid activities that might arouse the suspicion of the authorities—meaning, they live in a constant state of high alert, avoiding high-risk situations. They do not go to the doctor because they are afraid they will be asked for documents proving their residency, and they alter their behavior to avoid situations that would cost them more money. They live in survival mode. Over the long term, conditions that start out as stress or depression can develop into physical ailments for lack of treatment.
Norma has never received any kind of preventative health-care service and has never had access to mental health services. According to the Dream Resource Center study, of the 550 young people interviewed, only 27 percent said they had access to any kind of psychological or emotional counseling if they needed it; 30 percent said they had access to some kind of emotional wellness services, and only 19 percent said they were part of a group that provided support.3
“I usually keep things to myself, or I tell my sister; that’s all I can do,” Norma tells me. “I think being undocumented has made me always aware of my situation. My friends tell me their problems, but I don’t know exactly what they think about immigration, and sometimes I feel overwhelmed, because even if they’re trying to be understanding, they can’t understand what it’s like to live like this.”
If Norma doesn’t get much help outside her home, there is not much help to be had inside her home either. Since she and her entire family are undocumented, medical care is in short supply for everyone. That hard reality may be behind Norma’s goal to try to get work improving the quality of life in communities like hers in urban environments after she graduates from college.
“We try to be really careful and not get into any trouble. When one of us gets sick, everyone else tries to help—we try to find over-the-counter medicine; we pray and hope everything turns out all right.”
With no access to a doctor, the best option is a pill and a prayer.
When I bring up the issue of health-care access with Mafalda, she responds immediately and says she knows the treatment that she and her family have received is a privilege. Her doctor is aware of her immigration status and made arrangements for Mafalda to continue receiving care after she turns eighteen, which is normally when patients need to find other options, until shortly before she turned twenty-one.
“It was twenty years of service,” she says about the treatment she received uninterrupted for two decades. “They fitted me for orthopedic devices, and I found out when I was a kid they cost four thousand dollars for a pair—I can’t tell you how many of those I had. They gave me medications, and I had thirteen surgeries; I was in the hospital for months after some of them. Can you imagine how much money we would have had to pay for twenty years of treatment and thirteen surgeries? And we didn’t have to pay a thing. But it’s not just the cost; it’s that the treatments they offer you can’t get anywhere else. They’re always on the cutting edge,” she says about Shriners.
It’s often the case that undocumented people who do not have access to some services because of their immigration status tend to appreciate those services all the more when they do get them, since they understand all too well what it means to go without them. That is part of an undocumented person’s identity: the awareness that your immigration status is always there, and that means limitations.
Mafalda clearly remembers the day she had that realization. It was July 29, 2010, the day the law SB 1070 went into effect in Arizona, which made employing undocumented people a crime.4 Mafalda’s mother lost her job the same day. For ten years she had worked in the accounting department of a supermarket chain that had started in California and expanded to Arizona. She liked her job, and the owner of the business valued her work. As Mafalda’s father, Carlos, told me once: the business owner understood the worth of undocumented labor. When the supermarket-chain owner had to fire his workers, he hired a lawyer and searched for ways to legalize their immigration status, but he discovered that for people in those circumstances, there are no options. In María Esther’s case, the supermarket-chain owner felt so badly about having to let her go, he offered her financial compensation. The crippling blow of having to fire his workers, coupled with the financial crisis of 2008–9, meant that he had to shut down the supermarket chain.
Understanding the implications of being undocumented also meant understanding the limitations Mafalda and her brother, Sebastian, would face in going to college. Carlos and María Esther did not know that their children would have to pay the same steep tuition fees as foreign students because they were undocumented, nor were they aware that their children were ineligible for federal financial aid for the same reason. At the time, there was little information readily available on what financing options were open to undocumented students who wanted to go to college, even from education professionals responsible for providing that information. Mafalda’s parents met with a school counselor who told them that their children simply could not afford to go to college. This blunt assessment, on top of the growing anti-immigrant sentiment in the United States, made the Guetas for the first time consider returning to Mexico. It was 2012.
But before going back, the family decided to exhaust all their options. Mafalda and Sebastian asked around at several colleges and universities, and the answer was always the same: no financing available. Sebastian felt beaten down, but María Esther insisted that Mafalda go and talk to the University of California Riverside. “If they say no there, we’ll stop,” Mafalda remembers her mother saying. Mafalda went to UCR and found someone in the administrative office who was able to advise her on how to get financial assistance.
“That changed my future,” Mafalda remembers. “I decided to go to UCR because of that. My first choice had been Santa Barbara, but UCR definitely was the best option, because it has stronger roots in the community. We [she and Sebastian] could build a network with other undocumented people there without experiencing the xenophobia like some of my friends at other schools have had to deal with sometimes. The five years I have been there have been a privilege. I’ve had a really good relationship with the dean, and I made some connections; there’s a support network that includes professors who help undocumented students. It’s a safe, welcoming community.”
At around this time, DACA went into effect, which finally made Mafalda and Sebastian eligible for federal financial aid. Mafalda, always very outgoing, honed her leadership skills and began working for the Undocumented Students Project at UCR. In 2014, she was chosen to teach science at Yale University in a summer program for high school students, and she returned for three more summers. On June 18, 2017, Mafalda graduated with a bachelor of arts degree. She plans to work in education.
But now comes the hardest part, Mafalda asserts, as she starts planning for her future outside the safety net provided by UCR. Her ideal plan is to get a master’s in science education degree—the University of California at Berkeley and the University of Texas at Austin offer this program. At the same time, she has started searching for jobs at some universities. When we last talked, two weeks before her graduation, Mafalda had already sent in some applications, one to be a program coordinator for undocumented students and another for a job coordinating a Latino student center.
Before our last conversation came to a close, Mafalda remembered that on November 8, 2016, her family had an experience similar to what they had gone through in 2010. The night Donald Trump won the presidential election, Mafalda called her parents in tears. María Esther cried too, but Carlos said firmly, ‘We’re going to be okay.’”
Says Mafalda, “My parents told me: ‘We’ve been undocumented for a long time. We lived through the Bush years. We’ve been through so much, and we’ve gotten through it; we’ll get through this too.’ Now my biggest worry is my parents, because under the new administration’s guidelines, they can be easily criminalized. It’s easy to minimize their struggle, what they have done to give us the life we have had. I am about to become an undocumented college graduate, and because of the ‘good immigrant’ narrative, that gives me some space to keep going forward. I’m grateful for this, but my parents don’t fit that narrative, and they are the ones seen as criminals. I’m not worried about me; I’m worried about them. I know that because I went to college and earned a degree, I am seen as being of more value to society than they are, but because of all their hard work, they are much more valuable than a lot of citizens, because they’ve worked twice as hard to give their family what we needed.”
As for herself, her circumstances have resulted in one less worry. When she was fifteen, she met Sarah, a US citizen and now her girlfriend of eight years. For a long time Sarah said they should get married so Mafalda could legalize her status. Mafalda refused at first.
“I didn’t want to fall into that stereotype [of getting married to get a regular immigration status] but when Trump was elected, we realized we didn’t have any other choice. We have been together for eight years. We did it in a rush, but we want to have a real wedding when we can pay for it. Now, the priority is for me to legalize my status so I can take care of my own situation and my parents.”
According to US law, once Mafalda has legal residency, three years must pass before she can become a US citizen. Then, in 2020, she can petition for her parents. That process usually takes between six months and a year, so the earliest Carlos and María Esther could legalize their status would be in 2021. The alternative would be to wait until 2023, when Enola, the Guetas’ younger daughter, turns twenty-one, at which point she could petition for them.
“My parents had a good life, good jobs, a family, health insurance, and they left it all in a second just for the chance to give us a better life,” says Mafalda. “If Mexico had been more developed in terms of medical care, maybe we would not have had to come here; my parents wouldn’t have to worry about what might happen to them in the future. But even so, seeing what’s going on in Mexico now, I don’t know if we would have had any other choice. I don’t even think the problem is about the government; I think it’s a collective issue that has been there for a really long time.”
When I ask Mafalda if she thinks hearing a story like her family’s, of struggle and sacrifice for a long-term goal, would move anyone who’s in charge of immigration policies in the United States, she sighs.
“I know a lot of people who choose to ignore what is right in front of them,” she says. “I’d rather educate people who are ready to learn and grown. I think it’s been shown that he’s not a person who thinks like that,” she says, referring to Trump, “so I don’t know if I’d be willing to waste my time on him, because I believe it would be just that, a waste of time. If I’m going to talk to somebody, I’d rather talk to a community that could support me, not to somebody who I don’t matter to at all.”