Writing with their eyes
Born with a serious congenital disorder that prevented them from communicating, the Arrieta sisters managed to overcome their immense isolation by inventing their own language, using ocular movements to draw letters
In Lourdes Arrieta's living room, in San Sebastián, she and her sister Mentxu look at each other in silence. No words can be heard, but they're talking: they write out their conversations with their eyes. Lourdes is 55 years old; Mentxu is 50. Neither one of them has ever been able to walk. The deterioration of their motor systems prevents them from using sign language to communicate: they are unable to coordinate their body movements and have spasms and involuntary muscular contractions. Lourdes can only control one hand, just enough to type on a keyboard. She makes sounds, but she can't talk. Mentxu has more mobility: she can talk, but it takes her a great deal of effort since she can hardly vocalize and understanding her words requires patience.
"This is hard," says Lourdes, pointing, letter by letter, at an ABC chart covered with hard plastic. "It's only normal; people don't know what this world is like and they run from it."
Their story is that of a struggle to communicate - to prove to the world, and themselves, that they feel and reason like everyone else.
"No one knows how to access our minds to find input or output signals; to get an idea or an answer out of us. Each step we've taken has been to break our silence," they write in a text played back by a computer during one of their lectures. "For society, we were sick; they had to cure us." That's why they spent their entire childhood in sanatoriums. During those years of convalescence, their mother taught them how to read; necessity took care of the rest. At first, the only way they could express themselves was by screaming, caressing, hugging and hitting. Lourdes was almost 16 years old when her sister learned how to read, and for the first time ever, she was able to tell someone how she felt, what she was thinking about. With the only finger that she is able to move, she would trace on her sister's skin the letters that their mother had taught them: on her thigh, back, cheeks. Their bodies became canvases where they would write out messages: Lourdes would write in Basque; Mentxu in Spanish. They were bilingual, but they didn't know it then.
One morning in 1979, when the two sisters were almost 20 years old and were doing their exercises at the Association for People with Cerebral Palsy (ASPACE), necessity forced them, once again, to go just a little bit further. Like every other day, they put four sacks, each of them weighing five kilos, on Lourdes' arms to try to correct her posture. But time went by and they forgot to take them off. It was like those nights in the orphanages when the caretakers would forget her in the garden until dawn. Only there was no cold; just pain. And this time, Mentxu was less than six meters away from her. Using sounds, she managed to get her sister's attention. Then she started moving her eyes, up and down and from one side to the other. "Christ?" Mentxu asked her. No, that wasn't it, and she kept at it, up and down, left to right.
"T?" Lourdes nodded and kept on drawing, with her eyes, the letters of her message. T-E-N-G-O. "My hands were purple and numb; I had to hurry," remembers Lourdes. Finally, Mentxu understood the message. "Tengo las manos frías." (My hands are cold.)
When the danger had passed, they kept on exploring this new way of communicating with each other. Instead of drawing letters on the skin, they found they could use their eyes without the need for physical contact. "We had come up with a personal, non-phonetic way of transmitting verbal language, which we later patented and registered: the Arrieta method."
They were born with no language, without the possibility of anyone teaching it to them. So they had to make one up for themselves. And it consists of writing with their eyes. By moving the iris, they draw letters that the other person should read as if they were written in a mirror. Based on five imaginary points, the eyes move in imaginary lines, forming the letters. A diagonal to the left, another to the right and a horizontal movement: the A. A vertical line and two arches: B. Between each letter goes a blink; between words, a longer blink. "All the communicator needs to know is how to read. The Arrieta method will allow them to write. It can be a solution for people with functional diversity who can't talk or use sign language. It requires attention, patience and memory. In spite of all this, however, their communication is very fluid.
Thanks to their method, the two sisters communicate relatively easily with each other and the people close to them. But Lourdes hasn't given up the little tablet with the ABC chart that she uses when she wants to clarify something, or when she's communicating with someone who doesn't read her eye movements well. At first it was a piece of paper stuck on the wheelchair; then it was a wooden board; now it's an acrylic tablet protected by a hard sheet of plastic. With each new version, she has added new words according to her needs. At first it had only the basic ones: where, how, when. Want, can. Normal. On the second version, "www" and "@" appeared. The version she now uses has a name on it: Tulio, her husband. She met him online eight years ago.
Tulio is around 50 years old, with grayish hair, a daughter from a previous marriage and a constant smile on his face. During our interview, he attends to Lourdes' needs: he changes her position, feeds her, or turns her computer on for her. He also clarifies or expands on the comments the sisters make: although sometimes his wife talks to him using the Arrieta method. After five years of living together, he doesn't need her to spell out any messages to know what she wants.
They got married after three years of chatting every day, he in Peru, she in San Sebastián. "She impressed me from the start. I was looking for the same thing that she was: an intelligent, honorable person who wanted to get married."
From day one, Lourdes told him about her functional diversity, but Tulio says this didn't stop him from deciding to marry her in 2006: "I left everything in Peru: my job as a marketing advisor and a corporate documentary maker, my clients, my friends, my family."
In 2009, after two years of paperwork, they were finally married. "They didn't understand how a foreigner and a woman who is 96 percent physically disabled would want to spend the rest of their lives together."
New technologies have been the Arrieta sisters' strongest allies. An Olivetti Lettera 36 allowed Lourdes to get closer to her family, and Mentxu to get a college education. Today, using a wristband that holds a telescopic stylus, Lourdes marks the letters on her computer keyboard. With this tool she is more precise and feels that she can communicate more freely. Online they do the shopping, check their bank accounts, talk to their friends and meet people. For Lourdes, the one who has the hardest time communicating, this is an essential tool in her life. In her opinion, this is exactly why learning to use the computer was so easy for her: it was something intuitive, a tool that, out of necessity, she learned to use before it was even invented.
Lourdes and Mentxu make a huge effort to spread their method because they think there are a lot of people who could benefit from it. They give presentations and are currently making a documentary about their story. This desire to tell others about what has taken them 35 years to perfect is captured in one of Lourdes' poems, written after a friend's death: "I wish I could get into your head, / I wish I could get the light out of that diamond, / I wish I could give you my language, / but you left." The poem ends with the moment that she learned that her friend had passed away: "I wanted to talk, scream, cry, / but I only managed to consume a bitter whistle."
Managing to lead an independent life has been a gradual conquest. But there have been milestones in their history. One of them was when they were diagnosed with double congenital athetosis (a lack of liquid in the medulla oblongata). Last March, they found out that the diagnosis was wrong: a series of tests sent to a lab in the United States concluded that what they had was glutaric aciduria type 1, but the doctors had been right about the essential part: their brains were intact. In a nutshell, their current diagnosis means that they don't have an essential enzyme needed to digest proteins, so their body turns against them each time they are ingested. It is classified as a rare disease that only affects a tiny percentage of the population. Today, it doesn't have any serious consequences: an analysis at birth allows the parents to act accordingly.
"Didn't it frustrate you to find out that this could have been avoided?"
Lourdes smiles at the naivety of the question. "So what if it does?" she points out on her tablet. Behind her laconic answer is a reflection that is often forgotten: what's the use of regretting? Mentxu chimes in: "I don't know what it's like to be able to walk, but it wouldn't change my life." To which her sister Lourdes adds: "I would. I'd like, for once, to know what a normal day is like."
At birth, her doctors said she wouldn't live more than two months; then they said two years. Lourdes remembers how her mother cried constantly about people's rejection and the difficulty of having a daughter that "just cried, drooled and had spasms." Yet even as a small child, she was aware of everything. She heard, felt, reasoned and suffered every time someone saw her as divine punishment or heard them pray: "May God come soon and collect this poor little creature." She was five years old when her sister was born. "She was just like me. That was a tough blow for my parents' self-esteem. Dad never got over it."
In Spain, during those years, there was still no talk of aids, subsidies, equal opportunities or rights for people with disabilities. That has all changed dramatically in terms of the resources accessible to them and the social conception of the disabled, but they insist that there's still a lot of work left to be done. That's why they spend part of their time spreading the Independent Life philosophy in the Basque Country. "We're a social expense? Social investment!", says Mentxu. Tulio, Lourdes' husband, adds a few figures: "In Spain there are 4,700,000 people with functional diversity. Imagine if each one of them was given an assistant. How many unemployed people are there?"
Each of the Arrieta sisters now lives in their own flat, with two assistants who take turns helping them, but from the ages of four to 12, Lourdes was committed to sanatoriums; Mentxu, from age five to age eight. "We had become guinea pigs on whom the doctors tried every new drug that came along," says Mentxu. "They enjoyed humiliating me. They made fun of me and called me crazy. That marked my life. I was never able to utter another word. I was determined not to stay like a vegetable," says the oldest Arrieta sister in one of her lectures.
After long days of silence and observation, Lourdes - the sister who has the most difficulty communicating - got an idea. In one of the sanatoriums, says her sister, the nuns ridiculed the girls who couldn't set up their own bedpan. Every morning they would put up the wet sheets for all to see; there were insults and beatings. One night, she decided to get down and drag herself across the floor, on all fours, from bed to bed. "First there was Rosa, a 12-year-old girl who was rather heavy and could barely move. I slid her bedpan under her and removed it. Then I did the same for Ana, Maite and other girls," she remembers. Night after night she did the same thing, until the beatings stopped. "I didn't help them with their bedpans out of kindness alone. I planned it and weighed the consequences. I saw a great opportunity to make myself understood: solving the group's problem would also solve mine."
As Mentxu grew up, she benefited from the path that her sister had already smoothed for her. She pursued a college education. At first, she took the exams at home, later in school or high school. Each step was a new battle: her abilities could never be demonstrated enough. "Since I did well on the exams, a history teacher thought I had copied the answers and assigned two nuns to watch me," she says.
Her functional diversity made pursuing a medical career unviable. Instead, she decided to study psychology and got her PhD cum laude, a degree that she says she also chose "to understand myself." When she wasn't accepted into the San Sebastián Choral Society, she decided to take clown classes. "The first day, the teacher thought I had got the wrong class." Now, whenever she can, she puts on her red nose to perform with Bazen Behin Clown, a group that has won several theater awards.
They both smile when asked what jobs they have held: "We've done just about everything." Mentxu set up a psychology practice that didn't work. They've had a bookstore; then a lottery ticket outlet. They've sold makeup, detergent, health care products, financial services, and even their own books of poetry, which they would go with their mother to sell in the Plaza de la Constitucion, in San Sebastián's old quarter.
But their biggest challenge is overcoming their own limitations. "We carry cellphones, we work on our computers, we've got e-mail accounts. We do the shopping and our own online banking; we pay the water, electricity and telephone bills and we get around on public transportation. We're what we always wanted to be." They shun pity just as much as they shun disdain: "We're not sick: what we are is sick and tired of people calling us sick."