When integration and equal opportunities for the “crippled”, “disabled”, or “sick” were beginning to be discussed
Mentxu Arrieta, adult student
I was born in Beasain (Gipuzkoa) in 1961. In my first months of life, I seemed like a baby without any “strange” or “defective” characteristics, but as time went by, my family and the pediatrician realized that I was a girl with a functional diversity that caused a lack of control over my body movements and difficulty articulating words due to the same imbalance.
When I was about to be born, my parents expected to have a “normal” baby to help my sister in the future, who had been born five years earlier with almost the same physical characteristics as me, in addition to an inability to articulate words. If having one daughter with functional diversity wasn’t enough, there I was to complicate things further. I think my parents felt guilty for not being able to conceive sons and daughters without any functional diversity.
My father worked constantly, and my mother took care of the household chores and looking after us. They wanted the best for us. It’s true that the outlook wasn’t very encouraging, and I believe I came into this family to fulfill a mission, although I didn’t know what it was. For many people, we were a source of shame, a misfortune. My father’s family sank into sadness; they didn’t know how to treat us. In contrast, my mother’s family welcomed us as just two more girls. We always preferred to be with and share with my mother’s relatives; we perceived less pity and more warmth towards us.
Initially, communication with my sister was quite basic, very primitive. Whenever one wanted to get the other’s attention, it involved hair pulling, shouting, and hitting, or else hugs, smiles, and kisses. We were always oscillating between extreme aggression and affection, creating personal inconsistencies. It was clear that this, as a form of communication, wasn’t working. Our parents weren’t aware of what was happening to us. When they found us fighting, pulling each other’s hair, etc., they would say we had bad tempers; one would get a slap, and the other would make a gesture of “take that!”. There were no technical aids of any kind, and everyone had to fend for themselves as best they could.
We still didn’t go out much and didn’t know what a wheelchair was. We had a stroller, but there came a point where our legs stuck out quite a bit, they dangled, and it was uncomfortable to go for a walk in those conditions. Some of my mother’s friends’ sons and daughters came to see us, but after a short while, they went out to play in the street with their friends. We couldn’t play like them, nor did they understand our games, or they found them boring. Anyway, there was one girl who came almost every day to be with us, and she didn’t have trouble understanding us. We played, we communicated as best we could, we listened to each other, and from time to time, she brought her younger brothers and sisters. There were physical differences, but everything was natural for us. Those afternoons were fun and had a taste of inclusion.
Since we didn’t have wheelchairs to go out and the school in Beasain wouldn’t admit us, our mother started teaching us to read, write, and do basic math operations. For example, to teach my sister to read and write, she would place a large notebook with all the letters of the alphabet on the table and slowly vocalize them while pointing to the letter with her index finger. To check if my sister was learning, she would ask her where a certain letter was, and my sister would point to it with her hand or finger. My mother didn’t go to school much, but she was very intuitive and knew how to make the most of what she knew to serve our needs. She didn’t know any pedagogy other than a little pinch when we didn’t learn quickly or got distracted. She was demanding. She always told us to be smart because we would have to study a lot if we wanted to become someone.
At a second stage, when I learned to read and write correctly, my sister and I were able to incorporate a new ingredient into our unorthodox way of communicating. She would draw the letters with a finger on any surface: the floor, my thigh, or her arm. I would repeat them orally in case of any mistake and memorize them. This lasted about 4 years. It was a form of verbal language that required attention, interest, patience, and memory. The essential point was that we finally managed to dialogue. And… without being very aware of it, I became my sister’s transmitter. If she hadn’t found some way to communicate, she was heading for madness.
In 1970, we moved to Donostia – San Sebastián. No school admitted us to attend classes. They claimed they were not prepared to receive students like us. Our parents had to hire private tutors who came to our home to teach us the different subjects. Afterwards, two teachers from the school would come to our house to examine us. At first, they didn’t know how to treat us, but over time, and with the results of the exams… they got used to us. We took the evaluations with an electric typewriter that was bought specifically for my sister, as she had more difficulty communicating and writing by hand.
Paying for our classes cost a fortune; it was necessary to rent out two of the three rooms we had in the house. We slept on a sofa bed in the living room. To get around the house, we crawled. There was always a lot of activity in the house, mostly among teachers and tenants. We didn’t have much contact with children our age; we interacted with adults. At first, the teachers were a bit taken aback, paralyzed when they saw us, although over time they got used to our characteristics. The same happened to the tenants, but to a lesser extent, because our interaction with them was less. What was unusual became commonplace. The atmosphere in the house felt like a nascent form of inclusion.
My sister got her first manual wheelchair at 17. At first, she didn’t want it, as it made her the center of quite a few stares. She was embarrassed. I got mine a year later; I didn’t pay much attention to the indiscreet and ignorant glances of people. Resilience was put to the test. Our father kept working and working, and our mother was always fully occupied with the house and us. One day, the priest who came to our house to give us communion asked our mother if she would allow us to go out with a group of girls. A few days later, we met them in person and, for the first time, started going out without our parents. That was our first group of friends outside the home.
Around that time, the media began to talk about integration and equal opportunities for the “crippled,” “disabled,” or “sick.” At first, it was groups of people with specific pathologies, or collectives of people marginalized for the same reasons. Parishes, associations, took on the defense of our rights, the improvement of our living standards, access to employment; even, to be called by another name and not be considered “sick.” The social presence of disability had begun, and we started to be seen. It was as if all of us with some type of functional diversity had taken on the responsibility of social pedagogy, demonstrating that we were human beings with the same right to life.
One morning in 1978, one of the most important events of our lives occurred. As was routine, we were doing our rehabilitation exercises. My sister had iron posture-correcting braces with sandbags on top in her hands. At the other table, I was doing manual dexterity exercises… or at least trying to.
The established time had passed, and no one came to take them away. The pain was very intense, and it increased with every passing second. She couldn’t speak, scream, or gesture with her bound hands. Suddenly, she thought of drawing letters with her eyes. She traced them very large, in uppercase, pausing slightly between each one. She had to hurry; her hands were purple and numb from lack of circulation. The situation was tense. After several attempts, she turned her head towards me. I looked at her, trying to guess what was happening. We were about 6 meters apart. She repeatedly drew something resembling the letter “T.” At first, I interpreted it as a cross. I vocalized it questioningly, and she shook her head no. This repeated several times until the sound of “T” came out of my mouth. Finally! She had grasped the idea. From that moment on, it was simpler because the method is logical. The sentence was: “MY HANDS ARE COLD.”
When it was all over, we understood that we were facing a possibility with unsuspected reach. Immediately, we began to work on researching and comparing different communication techniques that could be similar; as well as their systematization, methodology, design, and applications, according to the most well-known variables of functional diversity that might need it. We had created a personal, non-phonetic way to transmit verbal language. Later, we registered it as the Arrieta Method.
In my studies, I put maximum effort into all subjects. I would have liked to be a doctor; however, I had to change my mind due to my physical conditions. When they asked me what I wanted to study when I grew up, I proudly replied with a knowing smile: “I will study Psychology.”
Time passed, I finished EGB and started BUP at a convent school. My parents thought the education provided at a private center was better. I continued to receive classes from private tutors at home and kept going to the school to take exams. I had no problems and was always given the necessary time to complete the exams, which I did using my sister’s electric typewriter.Olivetti Lettera 36Since that typewriter made noise when typing, they put me in a separate classroom so I could take the evaluations and thus not bother the other students. They weren’t considerate; I received quite a few failing grades in math, which I passed in the retakes. I had no problems, although I didn’t socialize with the students in my class either. It seemed there was no room for inclusion.
I finished BUP and had to change schools, as they didn’t offer COU there. My parents took me to another school run by nuns, although I wasn’t too keen on it; I would have preferred to attend a public school. Things changed there because I started attending class with the other students. I think I surprised them, although they welcomed me quite well; I was the only person with a functional diversity. I didn’t have much trouble socializing, and little by little, I was able to show that despite not walking and having difficulty speaking, my mind was not impaired. I made few, but good friends, not just for the duration of the course, but also for leisure, friendships, etc.
Since I couldn’t take notes, I asked my classmates for theirs and made photocopies. I had a teacher who thought I was cheating on exams because they were well done. She even searched me. She thought that because I was in a wheelchair and couldn’t take notes, I wasn’t mentally normal. I ended up taking history exams escorted by two nuns next to me, one to port and one to starboard; it was a sight to behold.
Sometimes I took different exams in various subjects, and they failed me simply because there had been prolonged power outages. That wasn’t fair; I needed electricity to operate my typewriter, it wasn’t my fault there was no electricity. I asked to take them at another time, but they ignored me, claiming there wasn’t enough time. That attitude angered me. Resilience was also being tested.
Once the university entrance exams were approved, I decided to enroll in Psychology at a public university; they were the best years of my life as a student. I was still the only student with a functional diversity, and the teachers and students were surprised to see me. Perceiving so many eyes on me overwhelmed me, but we all had to go through an adaptation process. I loved asking questions and putting the teaching staff in a bit of a bind. I did this for two reasons: I liked to clarify my doubts and to show the class that I had no brain damage. I wrote the questions with aCanon Communicator, a small machine with a portable keyboard. It ran on battery. Everything I wrote was printed on a small strip of paper, similar to a streamer, which the interlocutor could easily read. In my university days, it was a great ally. I could ask the teaching staff questions, raise doubts, or anything else. I could attach the machine to the armrest of my wheelchair, as it had Velcro and a slot to attach the device so it wouldn’t fall. I felt very comfortable using it, as it was very discreet and quite silent.
I managed to be respected and, at times, somewhat admired. Five very intense years, learning a variety of new things, meeting people; the most varied opinions, concepts for all tastes, other ways of thinking and living. I felt integrated, respected, and with a multipurpose group for studying, doing assignments, dating, walking, and partying. All of this enriched me and helped me grow as a person. My sister obtained her School Certificate and preferred to study languages.
Around that time, the 1980s, universities and many other public buildings were not accessible. Elevators were conspicuously absent, and steps and stairs appeared at every turn. My classmates had to help me up a floor more than once to get to the assigned classroom. In any case, I requested a change of classroom, and it was quickly resolved.
After graduating in Psychology, I obtained a diploma in Criminology. I even had the opportunity to attend an autopsy performed by the forensic anthropologist, Paco Etxeberría. It was not at all common to find a person like me in such a place; it was clear I was daring. The bad part of the situation was the smell emanating from the deceased, as this person had been dead for over a week.
Since in our situation it was almost a utopia to get a job, in 1982 we decided to create our own company: a bookstore-stationery shop in Amara (Donostia-San Sebastián), our neighborhood. Between the two of us, we handled sales, collected payments, and managed the business… In short, we had to do everything. Our mother also helped us, especially with picking up and dropping off orders from wholesale warehouses in her car, and cleaning.
That business became a kind of school for the neighborhood. We proved that we were capable of working, despite our physical conditions. The relationship with customers was very good. We managed to earn the respect and loyalty of locals and outsiders alike; something we achieved by always maintaining an attitude of seriousness, respect, good listening, and responsibility. It was necessary to give in order to receive. We all learned there.
In 1996, I bought my first computer, as I decided to complete my doctoral thesis in Psychology and I didn’t want several decades to pass writing it with theOlivetti praxis 45D. In those years, computers did not have a control panel or the Accessibility Center section to activate keyboard use and press two or three-key keyboard shortcuts simultaneously. Faced with this situation, without hesitation, a friend and I devised and built a fairly light metal contraption with a wooden base that ended in a piece of lead at the other end. I placed it to my left, I’m left-handed, near the keyboard. I held it by the metal rod, carefully placed the lead tip on a key, and then pressed another key with my writing finger. Despite having to use this contraption, I felt much more comfortable than with the typewriter.
Soon after, the Internet arrived with all its possibilities and almost without the barriers of the real world. I have never been able to use a mouse because my pulse has a mind of its own. On the other hand, even though I only use two fingers to type, I don’t feel too slow. I think everyone finds their own tricks to exploit their abilities as best as possible.
In 1998 I presented my doctoral thesis: “Attitudes and social beliefs of young Basques about physical disability”; as of today and with the new nomenclature, it would be titled “Attitudes and social beliefs of young Basques about physical functional diversity”. I wrote a summary of it on a few sheets of paper and a classmate read it, as at that time there was no program with voice that could be connected to a computer, or at least I didn’t know of any. I defended my thesis with a laptop that Agustín Echevarría, my thesis advisor, lent me. This computer was not known for its accessibility to people with physical functional diversity. Nevertheless, I was able to answer the questions from the jury members, emerging successfully from the test. The jury was exquisitely inclusive, to tell the truth, the subject lent itself to it.
I want to end with a phrase that invites reflection: Young children do not exclude, they welcome all diversity; let’s learn from them.