Waiting Game

by REBEKAH

We walked up to the white doorframe set in a typical Valencian whitewashed building, the entrance to the humble apartment of Miguel and Pepi Rodriguez. Our fingers were crossed that we would find them at home — but this time, we were not so lucky. “Have you seen Miguel and Pepi?” Vicente asked his aunt  Carmen, whose open door protruded from around the corner. He had spotted the single son of the young couple in her doorway, and figured they must not be far away. She told us to pass by in half an hour; yet another waiting game.

By the time we finished our killing-time coffee break, we managed to have just missed Miguel once again. We found his wife Pepi in the house this time around, at least. Climbing the long staircase from their front door, we were welcomed by the sweet, spectacled face and bright green eyes of their kid. Emmanuel is 8 years old, a child with a vibrant smile and never-ending energy. Standing at the top of the stairs, calling out to Vicente with the respectful “Uncle! Uncle!,” he seemed like a perfectly typical 8-year-old child. But when he moved, his abnormal gait gave away his rare condition — though officially undiagnosed, he is thought to suffer from Duchenne Muscular Dystrophy, a rare degenerative disease involving progressive muscular deterioration.

Emmanuel’s face lit up as Vicente and I spoke to his mom about the possibility of going out to dinner later — “Kentucky Fried Chicken! Kentucky Fried Chicken!” he sang. His chant was delivered in such a sweet tone that instead of a demand, it rang like gratitude for the promised evening excursion.  “Well. Now we definitely have to go out for dinner,” Vicente said as we walked away from the front door. “How can we disappoint the kid?”

A few hours later, we met Miguel after his meeting and drove back with him to pick Pepi and Emmanuel up from the house. As we waited inside for the couple to shower and get ready, Emmanuel practiced his English with me — he had “nice to meet you” down pat, and I soon found he knew a remarkable number of other words. “You know, it is important to keep learning English,” Vicente said to him. “When you get older, it will open a lot of opportunities for you.” The three of us waited with our backs sunk into their black couch, watching cartoon reruns on TV.

Pepi emerged from the back, dressed to impress in black with bright red lips. She told Emmanuel to go get his braces from his bedroom, and he slipped through a door off the kitchen labeled “Manu” in dancing, colorful letters.  He came back with two plastic devices shaped like his feet and calf, which his mom helped him to strap onto his little feet. These helped him to walk, given the weakness in his leg muscles.

After a bit of indecision, the five of us piled into the car and headed to the Spanish restaurant La Avenida. We opted to have casual, happy conversations over our tapas and sangria, saving the more difficult subjects for later in the evening. They had me try  Morro, which is fried pig skin, a much-loved delicacy in Spain; we talked about an upcoming wedding, and Vicente asked Miguel to explain to me their shared family line, the Coverteras.

“Coverteras?” Miguel asked, laughing. “Coverteras are not classified by how many ancestors were Coverteras. They are classified by degree of craziness. The number one Covertera is Uncle Justo. All year he saves money, and then he makes his way down to Sevilla every summer and puts all the saved money into a business to make wooden chairs. He has a red bullfighter cape, and sometimes in the summer — when his brain stops working —he uses the cape to scare people in the streets, simulating he is a real Torero, especially in front of poor gadji. One time, the Virgin Mary appeared to him in a vision, and told him to hunt for a treasure of gold coins. The whole family was laughing, but he took everybody to the mountain and rented a digging machine, and started digging for the treasure.”

“And you know who the number two Covertera is?” Miguel asked; I didn’t. “Vicente.”

Miguel and Pepi Rodriguez. [Photo by MAGNETO]

Miguel and Pepi Rodriguez. [Photo by MAGNETO]

Later, sitting in their apartment again after Emmanuel’s bedtime, we drank sweet coffee with milk and talked beyond laughing matters. Both Pepi and Miguel first realized they were Roma in school, both because of the taunts from other children, and because they always had a sibling or cousin by their side to defend them.

“I remember there was a child who tried to beat me up in school,” Miguel said. “So I pushed her, and her older brother came to beat me. I told him, don’t beat me, I am Roma, but he didn’t listen. Then my cousin Diego came, and he defended me.  In some ways, it was good to be Roma, because belonging to an excluded group, that group takes care of you. But there are also many bad points. They are excluding you constantly, from many circles. You cannot go to any person who is educated saying that you are Roma, because everything that you say will fall to the ground.”

For centuries Roma were isolated, he said, and this made people isolate them even more. Pepi agreed, recounting stories of being taunted in school, little kids calling her “Gitana! Gitana!” Sometimes these acts led to fights and sometimes not, but they always burned the separation a little deeper.

“Unfortunately, when you are excluded, the natural defense is either to implode, or to explode. And that’s why many Roma isolate themselves and get complexes,” Pepi said. “They have fears. They do truly believe that they have less value than any other person, but it is not really like this.”

Miguel stepped in, explaining how the same exclusion and separation carries over into the working world. “Depending on what kind of job you have, you can say that you are Roma or not,” he said. “With this story, you will see why Roma always prefer to work for themselves. Because if you work for others, they will exclude you.”

He was working in a factory some years ago. Every time somebody at work told him something horrible about Roma he was forced to bite his tongue. Because of his family, especially because his child suffered from a serious illness, he could not afford to lose his job, so he needed to keep silent even as people humiliated him.

“People generalize, people blame us, but we are all equal, we have feelings as any other person, we are honest people. There are dishonest people too of course, as in any other culture. But I am not ashamed in any way for being Roma; I give thanks to God every day. For me to be Roma it is a honor, but then people look at you as a freak because you say that you follow tradition. And due to our traditions, we pay. We don’t see any logic in things other people see as logical, but we guide ourselves by feelings, and we have values that command us and show us who we are.”

We prompted them to talk specifically about the economic crisis. The situation in Spain has affected everyone from doctors to street sellers, Roma and non-Roma alike; its impact on the lives of individuals can be utterly shocking.

“I can tell the example of my uncle Quique, who was the richest guy in the whole family,” Miguel said. “Before the recession he bought for himself a house in cash — that was maybe 10 years ago. By now he has been forced to sell it of course, he lost his job. Now he lives in an abandoned house, his floor is made of dirt, and he doesn’t even have a kitchen. For me the crisis also changed my life, especially because of my child. I went from selling in the market to begging for a job at the stone factory. Now my hands are destroyed, and I used to come back home every day bleeding, every time I took off my gloves. Then the stone factory closed, and I found a job as cleaner in the streets. They made me work for many hours illegally; my feet were bloody and my wife was crying. And even like this, I was forced to deny that I am Roma.”

Pepi had been very silent up until this point, though her expression was sad as she listened — or maybe just lost in thought. But when we prompted her to speak her story poured out in a storm and the three of us listened in solemn silence, eating the occasional cookie, staring down at the black and pink table settings. I strained to understand some words but could not bring myself to ask for a translation, could not interrupt.

“We are a young Roma marriage from Valencia, from a town called Alfafar,” she started. “We were married very young: I was 18 and Miguel 22, and we though our lives would be easy, pink color. We had many illusions in our heads; we thought everything would go perfectly. So after we married I got pregnant and we had a child.

“Our child Emanuel, he was born with problems. When he was only 4 months old he was not able to stay seated, he fell constantly, and had no strength in the hands, the spine or the legs. He was like a puppet. We went to the doctor and he said that my child had Muscular Hypotonia; that was the first diagnosis. Then we went to the neurologist, they found it was something with the central nervous system. They stung all his little body with needles to know what was happening with him, and finally took blood form his aorta vein. But the child was growing, and the same doctors said that he suffered from a very strange disease, but nobody knew what he had.

“They told me at the beginning it was something called Duhevnev Syndrome; that would mean he could get better for a certain period of his life from 4 or 5 until 8 or 9 probably, and then they told me that from 12 or 13 at latest he will end up in a wheelchair and later on dying. That was what the doctor said to us. They kept making tests, genetic tests on Emanuel, but we were destroyed, we were living on anxiety. I had depression, my husband was also very affected, we were passing a hell. When you get married, what you want is to stay in home with the person you love and to be happy with your child, but what happened? For us it was totally the opposite, all the dreams we had came crumbling down because the child we waited for was born very sick, and the worst was that we even did not know what he had, and then nobody helped us.”

The couple did not have insurance, and the benefits they did have didn’t cover the child’s medical needs. When they went to ask for social assistance — not for food or light, but for the treatment of the child — Pepi prepared the medical documentation and papers by herself, and went to speak with the woman who handled cases like her own.

“In Spain there are many people with problems,” the official said, turning Pepi away. “If you don’t have money for food or light it is your problem, and about your child, you’re an unfortunate mother, and it is your role to suffer this experience with your children.”

The woman’s cruel words marked her, Pepi said; she left the building crying. She didn’t want to go back to social services, but for the child’s sake she did, spending three years fighting. Every time she went with the necessary proof they denied her, humiliated her, asked for more papers with signatures from more doctors. She finally got assistance when a new woman came to take over the job. She was even asked by one woman at social services: “oh God, how has nobody helped you?”

“I felt ashamed the first time I asked for help,” Pepi said. “I felt very ashamed, but even being humiliated, even like this, going with my naked open heart, they attacked me, saying your role in history is suffer, bad luck. But I never asked for food, I begged for food from my family instead; I did not ask for light, if they cut it, we lived in the darkness; I asked only for my child, for his quality of life. You know, there’s a minority of Roma in Spain who are not integrated, a small minority, but most of us are very well integrated. I have many friends, I’m someone ordinary and my child deserves the same opportunities as everyone else.”

When she finally received assistance, Pepi was able to buy new apparatuses for her child, to help him walk. When they didn’t have money she used to repair the ones they had constantly, using small metal wires.

The child's wire-repaired brace. [Photo by REBEKAH]

The child’s wire-repaired brace. [Photo by REBEKAH]

“I learn how to do it by myself, but the child suffered pain for it, and I didn’t know until the child showed me blood on his legs, the wire was stinging his little legs. I was indignant: it’s not that we are Roma but that we are humans, living with the rest of the population, paying taxes as everybody else. I don’t understand why there is money for certain things, for poor people, all this help, why a lot of people received benefits and I did not received anything, even with all the medical papers and the reality we lived?

“When you pass the bad moments you became stronger. I’m 28 years old and I feel like 50, because they made me pass through hell, but thank God we have the Lord. There’s a famous Spanish TV show called We Have a Question for You Mr. President. I use to dream every night that I could talk there. I had a simple question for the president: why must my child suffer like this? Why? What did he do wrong?

“I’m Roma and I will say, I felt very discriminated. I don’t understand. I don’t feel bad I feel terrible, and they made me feel like this. When people say there is no racism in Spain they are lying, of course there is racism. We are not dogs, we have have soul, we have will, we have thoughts. I tell you this, inviting people with soul and with will to use their will to not discriminate us. There is no reason to be afraid of us, but just the opposite: we love people, we are not racist, we want to be friends with everybody.”

After Pepi finished, we fell into an empty silence around the table. It was late, certainly time for Vicente and me to leave. But I was stuck, my eyes glossed over with the beginning of tears. What a strong woman, I thought, appreciating Pepi’s defiant expression and strong will. I was stuck on the mental image of little Emmanuel, the smiling linguistic mastermind who just wanted KFC, and adventure, and the Disney channel; stuck on the knowledge that these loving parents, suffering so deeply for their child, would likely see themselves robbed of the boy’s spirit too soon.

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