Making silence speak
Alba Aguilera Rojo.
Original title: Life story of Belén Jurado. Giving voice to silence. First edition in Castilian Spanish: October 2022. Author: Alba Aguilera Rojo, Illustrations and images: Belén Jurado and Mariano Grueiro. Collection: Stories of exclusion and the fight for inclusive education.
Text presented in the Master’s DegreeSocial Change and Educational Professionsfrom the University of Málaga, as part of the author’s Master’s Final Project, titled “Biography of Belén: Learning to Be Through Activism for Her Daughter’s Right to Education,” supervised by Ignacio Calderón Almendros. This book has been collaboratively built between Alba Aguilera and Belén Jurado.
Both the text presented here and the rest of the report are part of the Research Project Emerging Narratives on Inclusive Schooling from the Social Model of Disability. Resistance, Resilience, and Social Change (RTI2018-099218-A-I00), funded by the Ministry of Science, Innovation and Universities, led by Ignacio Calderón Almendros and María Teresa Rascón Gómez, and developed at the University of Málaga.
Work published under a Creative Commons Attribution-ShareAlike 4.0 International License. https://creativecommons.org/licenses/by-sa/4.0/.
To Toni, Lucía, and Marcos.
Index
- Introduction
- Belén Jurado
- My brother Toni
- Lucía’s birth. And the diagnosis
- “The best option for your daughter”
- I didn’t see it so bad
- Waking up from stupor
- Starting to be uncomfortable
- Disappear and don’t bother
- As if they had a piece of furniture
- Convince professionals
- In my own words
- Present and future
- About the author
Introduction
This text is about getting to know and being a voice for Belén Jurado, an activist woman who has spent her whole life closely experiencing what discrimination and oppression mean. From a young age, through her brother Toni, who stopped speaking after facing mockery and invisibility due to a mental illness. Later, through her daughter Lucía, she has suffered all sorts of setbacks in her efforts to defend her right to education.
Belén’s entire life is marked by the struggle for the rights of others, particularly the right to live with dignity and the right to education. Throughout this time, she has not given up and continues to fight, even today, for her daughter’s rights and for those of many other children. She does this not only by sharing her reality but also by creating spaces for empowerment with many other families, forming a beautiful and assertive community.
What Belén offers us is her story and her struggle, without reservation, opening her heart and memories so that we can delve into the nooks and crannies of a life marked by discrimination and oppression, not only by her but by her loved ones. She finds the voices of her brother and her daughter, who are people who cannot speak and tell their stories, and she ensures that they are heard as far and as strongly as possible.
I chose Belén because she moved me and outraged me to hear her talk about her daughter and the continuous struggle with the school to simply defend her right to education. It pressed a button in me that I knew was there, but had never dared to push. And above all, I chose her to contribute my small part to spreading this story.
Belén Jurado
All lives are worth living.
I am Belén Jurado, mother of Lucía and Marcos. A few years ago I decided to start a project to help my daughter, and after that one, many more have followed.
Lucía’s Room, my first blog, was born out of the need to change the present and future for people with functional diversity through our experiences. It is a wake-up call to our society so that autism is better understood every day, false myths are debunked, and the rights of these individuals are met.people.
I collaborate with an educational project called #mesasNEE, a virtual space where families and professionals meet to discuss different Special Educational Needs (SEN), led by Antonio Márquez. We created a project from our room where we distribute flowers drawn by the protagonist to any corner of the world in exchange for reading the book “Education, disability and inclusion» by Nacho Calderón Almendros. We made our Mothers Project, a new blog, which we are very proud of, where all families can participate by sharing their experiences.
We have been changing some things, there is still much to do. That you are reading this means that you can also do something.
Thank you very much!
My brother Toni
Many nights when I went to bed, I thought: ‘I wish one day I will have the courage and strength to tell those people’.
I’ll start from the beginning, from when I was little. I was born in a very small town of 1,000 inhabitants in Córdoba, Torrecampo. When I was little, there were about 1,400 inhabitants or so. I come from a humble family; my father worked digging water wells, and my mother had a small home-based grocery store. I was a very happy child, very cheerful and lighthearted, as my mother used to say. I have two brothers, one is 12 years older than me, his name is Domingo; and my brother Toni, who is seven years older than me. This brother Toni went on an excursion to some camps nearby. It was like an enclosure, they stayed in tents. I got along very well with him; I had a great relationship with my brothers, especially with this last one, and I was eight years old and he was 15 when it happened. Before that moment, my life was normal, the life of a normal child, I went to a normal school, without any problems or anything.
One day, my parents told me we were going to pick up my brother, that his days at the camp were over. My mother, my father, and I went to get him. I remember we were in one of those cars my father used for work, it was like a big van, well, you didn’t sit in the back seats facing forward, but rather you sat on what used to be side-facing seats, and you were kind of facing forward. We picked up my brother and I was in front of him, I remember it perfectly.
My brother was one of those likable people who had a lot of friends, he was very endearing. He had a great disposition, very good, very friendly, and because of that, many people came to our house, his friends. He had a very active life and well, we came back from there and I saw my brother acting very strange, but I was eight years old. My brother had stopped talking. He didn’t speak at all, absolutely nothing. I was 8 years old and I didn’t understand anything.
I heard my parents say that something had happened to him, but they didn’t know what it was. My brother continued not speaking, there was no way to get a word out of him, literally, we couldn’t get a single word out of him and he was serious and seemed very strange. My parents started taking him to doctors and out of the blue, at 15 years old, he was diagnosed with schizophrenia. My brother Toni has had schizophrenia since he was 15. The problem isn’t schizophrenia, which of course also causes a lot of problems and is a very painful mental illness. But the biggest problem then, at that moment, was the enormous abuse from the entire town.
My town had 1,400 inhabitants. Excluding the elderly, the young people, and the children, everyone started to make fun of him, make his life impossible, do barbaric things to him. They would relieve themselves on him. I was an 8-year-old girl walking down the street. I didn’t go to bars or anything; our outings were walking up and down the street with my school friends. On many of those occasions, I saw what was happening to my brother and I didn’t know how to defend him. I’ve never been one to fight, or to be a brave person to defend someone in the moment; maybe I’ve learned over time, but not then. And what I often did was run to tell my father, even though my father might have already been in bed, because he always went to bed very early. I had to watch a guy drop his pants and pee on him, or how they tied cans to his moped, a Vespino, and he rode with it, making a huge noise, with 7 or 8 mopeds behind him.
My parents were told about that, but my parents didn’t see it. But my older brother did, and he defended him. And so it went on for many years. All his friends started to stop talking to him; they abandoned him. Once, I remember my mother asked those boys: “Why aren’t you talking to him? Why aren’t you hanging out with him?” She was asking them, who had always been his friends, who had been to my house so many times, who had been so many places with him. And I remember my mother asking them: “And why have you stopped talking to Antonio?” And they said: “Because he doesn’t talk.” But it wasn’t just that they stopped talking to him; they harassed him in an incredibly bad way.
We spent years and years living through that hell at the hands of an entire town, when my brother had done nothing. Schizophrenia is an illness that, well, usually appears around that age and develops like this: from one day to the next. Maybe you’re developing it gradually, but when it really shows, it’s like that.
So, why am I telling this? I want to tell this because it’s very important to me in what my life has become, in the experience I had there with my brother. I was very close to him and I saw my brother, I saw a person. I didn’t see a label like schizophrenia or mental health; I was eight or nine years old and I still saw my brother, and to me he was still the best brother in the world, but not to other people.
To this day, my brother still has schizophrenia and is still alone. Alone, but truly alone. He still lives with my parents, who are elderly, and my brother. He only has that relationship with my parents and nothing else. That is to say, because of having a mental illness, an entire town stops talking to you and makes your life impossible. I never understood it. I grew very angry at all those people, and I used to think many nights when I went to bed: “I wish I could one day find the courage and strength to tell those people.” I would like to know why they made his life impossible, why they did it that way. And I never had the courage, I didn’t.
I lived in my town until I was 27. Then I started dating Rubén, and I started to grow up. As I got older, I continued to see those things. It wasn’t like when I was an 8-year-old girl anymore; it was a different story. And they started to stop doing things to him; for them, he simply didn’t exist. And my brother doesn’t exist in the town to this day. Then I grew up, and I had a perfect relationship with my brother. He’s a great person; he’s the best person I’ve ever known. He has problems with auditory and visual hallucinations… But my brother is also very aware of what’s happening to him. He might say to me, ‘Why did you do this to me?’ and a little later he’d say, ‘Oh, sorry, they told me to tell you that.’ In other words, he realized he had heard something, but it wasn’t real. I lived with that problem in my house for many years.
At 26, I married Rubén, who is from Madrid. He used to visit the town a lot because his mother is from there. He had moved to Madrid long ago, but they had a house there and went often. Rubén has been the biggest support I’ve had in my life; I don’t know what I would have done without him. Since it’s a very small town, there was hardly any work there, so I moved to Leganés, Madrid with him. And a few years after getting married, we wanted to have children, but there was a problem: I couldn’t get pregnant no matter what. I’ve always had menstrual problems; I have polycystic ovaries, so I didn’t ovulate well, my periods were very bad, I couldn’t get pregnant. We tried for over three years.
A village courtship.
We were both 17 years old. She’s from my mother’s village. I go to that village in the summer and on holidays. The typical village boyfriend, but we’re still together. She was very cheerful at 17 and it was clear she had a home with a big problem due to her brother. Due to everyone. Her brother’s illness affected everyone a lot, and it was very noticeable compared to me, as my life was quite normalized, within the standards.
Starting to not study so much and already thinking about working. We got serious very quickly and started working early. She works there and I work in Madrid. I go more and more often, and the relationship gets more and more serious. When we had been dating for about 10 years, she comes to Madrid, and we both become independent that day, at the same time: we went directly from living together the day we got married, and we were coming from our parents’ homes. From our honeymoon, we returned to our initial apartment, and after being married for a few years, we started thinking about having children. Lucía, it’s hard for us to have her, it’s very hard for us.
(Rubén, Belén’s husband)
Lucía’s birth. And the diagnosis
They say you have to overcome a grief, that your child has already died…
We started trying to get pregnant, I was happy here with Rubén, we had a good life, I used to visit my parents and my brother a lot, I still do, less so now with the pandemic that I haven’t been able to, but I still maintain a sibling relationship with my brother, as he is a good person. I tried to get pregnant, I couldn’t, and I went to different doctors. With social security, they told me it would take a long time, and in the end, we managed to gather some money and I underwent a treatment, and on the third try, I got pregnant with fertility treatment, and that’s how I got pregnant with Lucía. The first year of having my Lucía was wonderful, nobody had told me anything at all. I was so calm, my daughter was my first, I didn’t know some things well, she didn’t point or do certain things, but for me, she was wonderful and I enjoyed her very much. It took me a long time to have her, and for me, she has been the greatest thing that has ever happened to me.
A year and a half after having Lucía, who was 15 months old, she didn’t speak, had no communicative intent, you’d call her and she wouldn’t respond to her name … These were very obvious things, but I didn’t see them, I never saw them. I only saw them when, at 15 months old, we met up with some friends, a friend of my husband’s who is a psychologist came over for dinner, and we went for a walk in the park near my house. I had Lucía with me, she was little, 15 months old, because it was at 18 months that we finally got the diagnosis. Lucía walked a lot and you’d say: “Lucía, Lucía!” And Lucía seemed not to hear you or just kept going, of course, things related to autism that he could see, but neither my husband nor I did.
Rubén, Belén’s husband: diagnosis.For a year and a half, we didn’t have Lucía’s diagnosis; we didn’t notice anything ourselves, even though it was already apparent. We didn’t see it because it was still early, we’d say: “Well, she’ll talk later” or “She’ll look at me later when I say her name.” We didn’t give it much importance until a friend of ours pointed it out. He was sure, but he was gentle and told us we could take her to the pediatrician, and we got the diagnosis right away.
Then Santi, our friend, tells us: “Don’t you realize it’s strange that Lucía doesn’t answer you?” Above all, what struck him the most was that she didn’t respond to her name. “Isn’t it strange that Lucía doesn’t respond to her name?” He stayed for a long time, but he didn’t tell us anything, he wanted to tell us. Later, after many years, he told us he didn’t dare, he didn’t dare because he also knew the struggle we had to have her, the years we had been searching, the joy it gave us when I got pregnant because the treatment had worked, we even threw a party calling everyone. This friend told us: “Don’t you find some things about Lucía strange?” And he listed one by one. We didn’t see anything wrong, and he didn’t say anything, he went home. A few days later, my husband arranged to meet him for a drink, as they normally do for a beer, and that’s when he said it: “I think something is wrong with Lucía, I think you should take Lucía to a pediatrician, to the doctor, I see something wrong…”
He didn’t say autism, but something struck him. He didn’t tell me anything that night, and the next day my husband tells me: “Santi told me last night…” and I say: “Yes, man, what Santi says is all lies.” “Yes, yes, but he told me why don’t we take her to the pediatrician” and I got angry with my husband, I got angry with Santi. He didn’t hear me. It really upset me that he told me that, because I saw my daughter as perfect, she had no problems. That she was slow to speak, yes, but I didn’t see it as a big deal either. I was angry for a few days, because that’s when I started to wonder: “What if it’s true? It’s not just anyone telling you, it’s Santi, who is a psychologist and has a lot of experience. What if something could be wrong?”
Different ways of facing it.I suppose that’s where we both changed a lot. I always felt like the stronger one. At first, Belén took it very badly, she hasn’t stopped taking it badly, and I didn’t really have much time to think about it. Someone has to provide balance, I don’t know. That way, I don’t think about how it hurts me too. I think about how I help or how I am useful. That has been my way, and hers has been different. It’s not that we chose it, but it turned out that way.(Rubén, Belén’s husband)
And then my husband, who has always been, as I said before, my great support and whose way of doing things has always been perfect for me, told me: “Well, look, you know what we’re going to do, Belén? We’re going to do it, we’re going to take her to the pediatrician. Since there’s surely nothing wrong, we’ll take her and then we’ll be at ease, without any problem.” We’ll take her to the pediatrician and whatever she tells us, then that’s it. I make an appointment with the pediatrician; I remember it was September 3, 2009.
I remember that date perfectly; I will never forget September 3rd. We arrived at the pediatrician’s and told her what had happened: “A friend told us this, we don’t know if it could be true or false, and we’re here so you can put our minds at ease,” we practically told her. So the pediatrician takes out a test, one of those huge ones they give all children, and starts asking us questions. “Does Lucía do this, and does Lucía do that, and Lucía used to do that, and Lucía do this, this, this?” And we said: “No, no, well, she does that, well, I don’t know about that.” “Nothing, don’t worry, Lucía doesn’t have anything, don’t worry, there’s no problem.”
We get up and, as we are leaving through the door, she says: “Well, wait, I’m going to give her another test” and she gave her another test, which was more in-depth, more specific, or faster, and that’s when she told us there was a problem and that Lucía had autistic traits. She sent us to early intervention for her to be evaluated, and the neurologist also sent us for tests to see if she had hearing problems. My older brother has a hearing problem, he is deaf in both ears and wears hearing aids, so it could be. I went to have the tests done to see if she was deaf, which went terribly. I remember that test because she didn’t want to stay still, and no, she wasn’t deaf.
A psychologist at early intervention evaluated her for several weeks. She played with her, she didn’t push her too much, she tried to get her to do things, she gave her tests, which I don’t entirely agree with, since they give them to all children the same way, the same questions, the same things. Some children don’t do these things, but that doesn’t mean they have anything. For example, my daughter doesn’t speak, she doesn’t understand. If you are giving her a test, she isn’t understanding you. It’s not the same as another child who does understand you. The same question isn’t equally valid for one as for another. Perhaps you have to adapt that test for her to understand it, because otherwise it has no value at all. And then these tests are often used more, like in school.
This psychologist tells us yes, it is confirmed that Lucía has autism, she has traits, not autistic, but she has autistic traits and says: “Well, we will assess her for the rest of the year, and for next year we will enroll her in school.” I hadn’t even considered enrolling her at two years old. “Or we can enroll her now in preschool, where there are ASD classrooms.” I hadn’t considered any preschool, it sounded, I don’t know how to explain it, it all sounded very strange, I was like in a cloud, I wasn’t understanding what they were telling me, I didn’t understand anything, what they told me didn’t add up. We had to go to many meetings, with psychologists, with lots of paperwork…
And all of a sudden, you find all of that. You don’t know where one thing or another is coming from. I am a nursing assistant, I worked in my town in a nursing home and here, in Madrid, I have worked in the hospital, I never had a permanent position, but I worked on different floors, I worked in the ICU (Intensive Care Unit), I worked with burn victims, which is very hard, and I worked in blood draws, but they were all temporary replacement contracts and I would go to work, but I didn’t understand what I was doing. They say you have to overcome a grief, that your child has already died, that it’s not the child you wanted.
For me, it is my daughter that I wished for, does she have autism? Of course, I don’t wish for her to have autism, but my daughter is still the same as when she was born, she is my daughter and I can’t say: “It’s just that my daughter has died now.” No, my daughter was born like this. My labor was very long and in the end, it was with forceps. I spent many hours trying to get Lucía out and she wouldn’t come out, she wouldn’t come out and in the end, they had to help me with forceps, but apparently, Lucía came out normal, she didn’t have any problems.
“The best option for your daughter”
Practically everything she knows is because we have taught her
The psychologist, whose name is Concha, after evaluating her and confirming she has autism, when Lucía was 2 years old, many ASD classrooms had opened in Madrid. These are classrooms with a maximum of 5 children, located within a mainstream school. According to what the psychologist told me, the ASD classroom is supposed to help them, but Lucía would spend the least amount of time possible there, because Lucía would go out into the mainstream classroom as much as she could. Only when she needed it at certain times, would she have to go to that support classroom for them to help her, with the pictograms and everything she needed… “That is the best option for your daughter,” she told my husband and me. “That is the best option for your daughter.” I’m an assistant, I had no idea about educational modalities, or if that’s the best, if that’s the worst…
I had no one to inform me. I knew many people, but friends of my husband, I didn’t know anyone who worked in that field and I was honestly stunned. I didn’t know what I was doing, and if the psychologist, the counselor, who is supposed to have evaluated millions of children, tells me that ASD classrooms are the best thing in the world, and tells me that it’s the best for my daughter, then at that moment I believe her. I believe it’s the best for my daughter and I agree to enroll her in an ASD classroom.
First in an ASD classroom, which was in a nursery school, but Lucía had to enter right away, otherwise she would lose her spot. So, Lucía starts at two years old, waiting for them to give her the ASD classroom at three, and my daughter, at two years old, is in a mainstream classroom with all the children, but without anyone from upstairs knowing that she goes to the ASD classroom, since she’s there a little bit…foreigner: she is in the ASD classroom, but it is listed that she is in the mainstream classroom, because there are not enough places, because there are five children and with her there would be six, waiting for when she turned three, which was very little left, when the following year we had to enroll her, she would already have her place in the ASD classroom. They knew that a child was leaving, because the nursery school where Lucía started was from 0 to 6 years old and that child, who turned six, was leaving and there was no other. So we started in that nursery school, in the ASD classroom.
I started with a lot of enthusiasm, enormous enthusiasm, that I couldn’t contain. I wanted to help, I was starting to realize that my daughter had autism or maybe people were already telling me all the problems my daughter had and not telling me anything positive, everything they told me was negative. Everything they have told me about my daughter has always been negative, except on very few occasions. Because they start telling me: “your daughter doesn’t point”, “your daughter isn’t going to do this”, “you have to forget about your daughter being like the others” and they bombard you with a lot of negative things about your daughter, who for you is the best in the world, because she is your daughter and you don’t see the problem so much, I didn’t understand it.
The fact is that we went with great enthusiasm and every afternoon I would sit with Lucía to get her to start doing things, to draw, to imitate me, because of course, she didn’t imitate, she doesn’t imitate, that’s Lucía’s biggest problem. Now she imitates more, but when she was very little, she didn’t imitate the things you did. I would sit with a marker and a notebook and say: “Come on, every afternoon.” I would make a scribble and leave it done, and after a while, I would make another scribble, but a scribble, I still keep the notebook.
Until one day, out of the blue, she picked up her marker and made that scribble, and from then on, she started making scribbles, drawing. My husband and I taught her to write and read. I bought a primer, and I said: “How can I teach Lucía to read? Well, I learned with a primer when I was little.”
Know her and don’t give up. We have that feeling very clearly. We believe that by knowing her, we have been able to explain things better and also, that we have not given up. I remember that Belén had an important moment when she hit the right note and managed to teach her a lot of vocabulary, to read and write, and the numbers and to add. I think that’s been us. I’m not saying they haven’t done it at school, but we almost told them how we were achieving it. (Rubén, Belén’s husband)
The internet wasn’t available either to inform you much about the things you could do. At first, I didn’t even have it, and when I finally got internet at home, I didn’t want to look at it much either because sometimes everything I read made me feel bad, and when I had anxiety attacks, I stopped reading it.
Learning to dig. At first, she didn’t want to. When she looked up information about autism on the internet, what she saw was very unpleasant. Then, when she learned to dig, she did see a big difference. (Rubén, Belén’s husband)
I started on my own. “How did I learn to read?” “Well, I learned to read like this, okay, I’ll see.” We taught her to read, to write, to add, to subtract. When she got older, to multiply, to divide, practically everything she knows is because we taught her, because at school… My husband works in construction, he finished COU, which is like fourth year of ESO, and I did an FP2, as an assistant. I had no knowledge, nor did my husband, of what autism was, or how anyone should be taught. We had no idea, we just knew we really wanted her to do it. I remember in a big park near home I would start: “Lucía, Lucía,” until she answered me, and I would spend hours and hours there, letting her walk and calling her. Until one day I managed to get her to pay attention to me. Every one of those things was a celebration.
The year after Lucía, she turns three. Since they told us it was for the best and they didn’t offer us other options, nor did they explain anything about curricular adaptations, only that Lucía needed them, I signed everything like a fool: curricular adaptations and the ASD classroom. Because I thought: “Come on, if you’re telling me so, it must be for the best.” The counselor was recommending it to me, and Lucía started at that preschool at two years old, although officially she couldn’t enter until she was three. Lucía spends the whole day in the ASD classroom. What they had said about her only being there for a short time and leaving when she needed to was a lie. Although I didn’t really understand what was happening: I would go, pick her up, sometimes they would tell me what she had done…
I wasn’t aware that it was so bad or so discriminatory that Lucía was in the ASD classroom. I was dazed, I didn’t realize. Lucía stayed until she was six years old in that preschool, which was very small, very family-like, with only one class for each grade—in other schools in Madrid there are many classes, many children, but that one didn’t—. Ana, the PT who was assigned to us, was wonderful, she helped us a lot. 2
But I barely knew her regular classroom teacher, the teacher of the mainstream classroom, nor did I know the children. We were never invited to a birthday party, we would line up and the child would arrive with their mother, take the stack of invitations, and start handing them out in line at the door, but my daughter never received an invitation. So we said: “Hey, let’s throw Lucía’s birthday party ourselves so that, once you invite, maybe they’ll remember her too.” Let’s start doing all sorts of activities, going to the park, to activities here in Leganés, doing everything possible so that she would have many opportunities. But it was impossible, there was no way.
I didn’t see it as so bad
I will never forget that she told me they hadn’t done it right by not letting Lucía leave the ASD classroom.
When Lucía was already five years old in preschool, a wonderful teacher arrived, named Teresa. She is a somewhat older teacher, she comes from another school that had closed another preschool; you could talk to her a lot, I used to go see her in class often, because in that preschool, you could go in to pick up the children inside, at least in that one. When I asked her, “How is Lucía doing?” she would tell me. Teresa and I started to have a very good relationship, and she managed to get Lucía invited to birthday parties. She started to achieve a lot of things because she wanted to take her to the mainstream classroom all the time, but the special education teacher said no, that Lucía wasn’t ready to be in the mainstream classroom.
That special education teacher was wonderful with Lucía, she is a very good person, but her beliefs or her way of thinking are not mine at all. She saw that the best thing for Lucía was to keep her out, and Teresa told me: “I often go to get her, what are we going to do…” Because they were five years old, it was very simple stuff. And Ana, who was the special education teacher, told me: “Teresa always comes for her, but I can’t let her stay out all the time.” And Teresa told me: “Ana doesn’t want to let me have her.” But I, between one thing and another, didn’t see too much of a problem either; I was happy, she was progressing a lot with what we taught her at home. She also started having a lot of tantrums at school, in the ASD classroom. I remember arriving and finding her very upset, having cried for a long time. She doesn’t have verbal language, she doesn’t speak, there are things she didn’t understand, and she would cry and scream.
When that school year ended and one day I met Teresa in a park near my house, I will never forget her telling me: “Because, Belén, they didn’t do it right, we haven’t done it right, because they haven’t let me take her out. Very few times have they let me take Lucía out, and that’s not right.” And I told her: “I don’t see it that way, Teresa.” “Think about it, Belén, don’t you think that’s not right?” And I didn’t see it, I didn’t see it that badly. “Well, yes, maybe, Teresa, but…” And that’s how it was left. Teresa and I have stayed in touch, she’s a great woman, Teresa.
We changed schools, because of course, when she turned 6, preschool ended, and it turns out that the ASD classroom in the preschool, for 3 to 6-year-olds, closed, and the PT moved to this school, near my house, which is where Lucía would start. She came with all the children from the preschool’s ASD classroom. The counselor referred them all to an ASD classroom that opened just the year Lucía started at the school next to my house.
Meanwhile, when Lucía was about three years old, a little more, I got pregnant with Marcos. I got pregnant without treatment, without trying, and without anything. I don’t know how I got pregnant because it was super difficult, and at that time, things weren’t exactly easy for having sexual relations, but I don’t know how, I got pregnant. I was very afraid that Marcos would have autism because, as I had been told, autism is genetic, and there was a high probability that siblings could have it. I spent my pregnancy thinking that the same thing could happen.
I became a little obsessed. But then my son was born without any problems and I was very attentive during the first year, because I said: “If Marcos has autism, I’ll notice it right away, because, of course, I’ll notice everything I know about Lucía.” But Marcos didn’t show any symptoms of autism, not at all.
He also went to nursery school, like daycare, of course, when Lucía was 4 years old, Marcos spent two years there. At six years old, Lucía came here with all her classmates and her PT, and I brought Marcos with me when he was exactly three years old, to start at the school here. A school next to my house, which is where all the neighbors around here go, whom I know from meeting them in the park. With tremendous enthusiasm, confident because the PT was coming, who is supposed to be, well, a good person, I’m not saying he wasn’t, he’s a good person and of course, I felt calmer, because you say: “Now to school, my goodness.” But since he was coming with her, whom she had known for all those years, I felt safer and calmer.
Wasted years. Then at school, the same PT followed her for the first two years, just as Lucía moved from primary school, that PT moved to primary school in the same classroom as Lucía, a bit of a coincidence that a TEA classroom disappeared in Leganés and they put her in another center, just the year she was bridging. We also don’t know if continuing with such a protective PT, who had known her for so many years, made the teachers, the primary school tutors, shirk their responsibilities, and that’s when Lucía wasn’t very far behind and was in a period where she was learning quite a bit. Those years were completely wasted. (Rubén, Belén’s husband)
Waking up from the daze
I started writing for my own release, because I needed to get that out, and talk about my situation and about autism.
I will never forget the first day Lucía started school at age 6, when all her classmates already knew each other since they were 3, as Marcos was about to start. Lucía was going to start at 6, while the other children had been together for three years. If Lucía had been there since she was three, maybe the bond would have been stronger or not, I don’t know, I’ve never known, although I don’t think so, that in the end it wouldn’t have been.
I remember they called me in September to meet Lucía. I always show my Lucía as the best in the world, because she is, to me she is, and I leave so happy with my Lucía and with my three-year-old Marcos to school, for an interview with the new support teacher, a support teacher who was also starting that year, because they are opening the classroom. Often, when a TEA classroom is opened, it’s assumed that nobody has any idea how it works or what needs to be done, even though they supposedly received a little training to open the classroom. And in the classroom there are 4 children and Lucía, and I go to that meeting. I have a photo from that day we went. They introduce me to Carmen, who is the social support worker, who will also be in the TEA classroom.
Ana is there, whom we’ve known for all the previous years, and Antonia is also there, who will be Lucía’s tutor in the mainstream classroom. Lucía was already starting to have fewer tantrums; she was advancing a lot because we had taught her a lot at home, but not at school. They haven’t taught her anything at school, in all the years she’s been there, very little. And we started off so happy. Lucía starts with her new classmates; we don’t have a close relationship, but we all go into the schoolyard to drop off our children, and I start meeting mothers. With some better, with others not so much. They have a group since they were 3 years old; I’m not part of it, nor did I want to force or push anything. And Lucía spends the entire day, the whole day, from when she enters at nine until she leaves at four, because she stayed for lunch. We were given a scholarship, and they always told us: ‘It might be better if she stays for lunch because she also learns to be with others…’
We made a great financial effort to pay over a hundred euros for each child, because we are a humble family. We never have spare money, we are always just getting by, and I was working at the time. Things have never gone well for us financially, but we made an effort, and Lucía would stay for lunch. But what happened? Lucía would spend almost the entire time in the ASD classroom. Not almost the entire time, the whole day, and on many occasions, she ate in the ASD classroom and didn’t go down to recess, she stayed in the ASD classroom. She stayed because she had been punished, because she had done this, because she had thrown something, because she had cried, because she had insisted on a toy and it wasn’t possible at that moment… For millions of reasons, Lucía started staying in the ASD classroom during recess. The cafeteria staff started bringing her food to the ASD classroom. Lucía often had no language, was frustrated, had some tantrums, so the punishment was not going to the playground, staying in the ASD classroom. It didn’t matter, because she was using the ASD classroom all day, it wasn’t a punishment at all. They told me that was the plan.
I continued with my daze, I don’t know how it lasted so long, I continued with it throughout the first year.
The mother of a girl who went to class with Lucía spoke to me a lot, as her new partner had a daughter with autism and she was very interested in that topic. One day she told me: “Join the group, I’ll add you to the WhatsApp group we have.” I said: “Oh, okay, then add me to the group.” A group of mothers from the mainstream classroom, because there was no group in the ASD classroom, there never has been. That’s how I started to find out that there were meetings and they didn’t notify me, about field trips, activities… They sent everything on little notes in the backpack, but Lucía never brought the note. She never brought it, so of course, since I wasn’t in the group, I didn’t find out about anything. Since I didn’t find out, nothing happened. I kept asking for my meetings, which I always did. I always ask for a meeting with the tutor, always every term, and I asked for them with Antonia, with that teacher who told me: “Well, Lucía… she participates a little,” but she didn’t tell me she never participated. “Lucía doesn’t understand this much,” she would only tell me negative things. That woman, perhaps she didn’t see anything positive in her and never did.
On many occasions, Lucía would have a tantrum or a problem, and they would tell me to punish her at home. This is something that is stuck with me, because in fact I used to do as they said. Punishing Lucía meant, for example, taking away her cartoons, her TV, things she likes; those are the punishments you can give Lucía, taking away her TV. And of course, taking away her TV at those times would lead to a sure, long-lasting tantrum that I had to endure. When the issue had happened at school, I didn’t have to punish her. I deeply regret having done so, when she didn’t even understand why she was being punished. Because she had neither comprehension nor language, and if I punish you tomorrow for something you do today, it makes no sense.
For example, they would tell me: “Today she pulled someone’s hair, come on, you’ll punish her this afternoon,” and that afternoon I would come home and punish her, my daughter and I would cry and be upset all afternoon, and it made no sense. What kind of teacher can tell you to punish your own daughter? Yes, if my daughter pulls hair, it’s wrong, logically. I can’t defend what isn’t right, but you punish her somehow, punish her in quotes, take away things she really likes, so she understands that the problem is there, not that when I pick her up happy and bring her home. It’s something that over time I’ve thought about: “And why the hell did I punish Lucía?” Things I regret, but at the time I didn’t see it. I was very naive, I let myself be guided because I thought they knew and I had been with the counselor since kindergarten, guided by what she told me. I thought that woman knew about autism, knew what had to be done and I didn’t, because I’m a mother with an FP2 education, nothing more. I had spent my life working in a hospital or in residences, and all you want is to help your daughter.
The problem in first grade was that I was dazed, I didn’t really know what was happening, and that she was in the ASD classroom, like in kindergarten, she had almost been in the ASD classroom in all the previous years too, it wasn’t too strange for me, I thought that was normal out of my ignorance. I’m not a teacher, I’m a nursing assistant, I don’t have knowledge of rights, or what my daughter is entitled to. I take her to a school thinking that my daughter will be educated like my son when I take him to school, I don’t think that because she has autism, there’s no place for her.
Then a lot of things start happening in first grade. As I was saying before, I start to realize that something is going on there, that this isn’t normal, that it’s not what should be happening. No, because it wasn’t happening to my son, even though he was three years old. For example, if everyone had to wear green because they were celebrating Earth Day and my daughter shows up in yellow, why hadn’t anyone told me? You’d be stunned, looking around: “Why is everyone wearing green?” You ask the other mothers, because I never hesitated to ask, and they tell you: “Of course, didn’t you know? They have to wear green today.”
An anecdote from an ordinary day. The green outfit thing, for example, are anecdotes from a specific day that stuck with you like a dagger you can’t remove. There are many things, but I don’t give them that much importance. What happens is that when something is being done wrong daily and it’s become normalized to do it wrong, then maybe the way it stands out is that they know Lucía won’t tell me we have to wear green. They know it, it’s impossible they don’t realize that parents have to be told that the child should wear green, just like everyone else, because Lucía won’t tell them. It’s just not believable that they don’t realize it; honestly, they think we don’t care. It’s so normalized to overlook things… (Rubén, Belén’s husband)
The first school year passes, and that summer passes, and I was so calm, nothing is happening, and I started writing on social media. I had no idea how to write, I didn’t know how to create a blog. I did it mainly for my own release, because I needed to get that out, I needed to talk about my situation and talk about autism, to debunk false myths like: they don’t want to, they don’t feel, they live in their own world, they can’t, no…
The hugs he will give me.
They say a hug cures many things… They are necessary for life… Hugs represent love, happiness, closeness. We all do it from time to time: we hug someone and show them our feelings towards them. It’s funny, they say that people with autism don’t have feelings, I laugh at everyone who says that, I call it ignorance. Today I cherish the hugs my daughter gives me every night before she goes to sleep. The hugs she used to give me, the hugs she gives me, and the ones she will always give me, because Lucía, despite what many people think, shows her feelings. Maybe in a different way, but she always does, and she has autism. So with this image, we want to debunk that false myth: They have feelings! A picture is worth a thousand words… This is a “little hug” which is how she asks for it.
(Lucía’s Room Blog, 01/24/2015)
And then I found Nacho, who was my salvation. I read a post by Nacho Calderón that led me to his brother. Because I was only reading and starting to become friends with mothers and fathers, especially mothers, but suddenly I find a professional talking about his brother, and for me, it was also about my brother, of course. I wanted to connect with him because of that, more for my brother than for what my daughter was. It was what I wanted when I went to bed as a child and said: “I have to say this someday, someday justice must be done for everything that is happening to my brother. Someday I have to have the guts to do it.”
So I found Nacho and started reading and said: “Damn, look what Nacho is saying!”, and I also started reading Carmen Saavedra’s blog Capable. And there, in the summer of her first year, I started to realize what was happening with my daughter, that what they were doing was pure and simple discrimination, without any shame: they were ruining her life, because she was losing years and years. Nacho is the person who opened my eyes and is a huge support, I owe him so much. He often asked me: “And why is Lucía always alone in the ASD classroom?” When I was little, they told me that the ASD classroom was only for the specific moments she needed it, but normally she would spend much more time in the regular classroom.
What they had told me was not being fulfilled. You would arrive at the school, for example, you would drop your daughter off at nine in the morning and pick her up at four, after lunch, and there was no agenda, no little notebook, nothing. She wouldn’t tell me or tell me anything because she can’t, and nobody tells me anything, they just hand her over to me like that, and that’s it. But not one day, or two, or three, I’ve been like this for six years, and even today it’s still like this. Today, for example, I picked her up at two-thirty and I don’t know what she did, I don’t know what she worked on, nothing at all, and no matter how many times I tell them… For an agenda, an email, something. I need to know how she’s doing, right?
Inform yourself and inform with hope. She switched to informing herself, as if with hope, to informing herself with hope. Then she switches to informing, sometimes with a bad attitude, sometimes with hope, sometimes because it serves people, sometimes because if they take something from you and you don’t say it, it’s as if they haven’t taken it. And as it is given to us in school, which is mainly her sphere, in education doors begin to close for us that for us were hope, because we saw so much hope. They told us terrible cases of children, a little older, and we have a very good teacher, a marvel. Then, you start to find out that being locked up there isn’t so good, but of course, at first Lucía didn’t tolerate changes much, it took her a long time to start, you settled for anything, and you saw her there, that they loved her, that they took care of her, you started to settle. When, little by little, you start to inform yourself and dig around, you see that there are many deficiencies and that has been one of Belén’s main struggles, to shed some light on that.(Rubén, Belén’s husband)
I found everything Nacho was saying, what was happening at my daughter’s school, very strange, because of course, if I didn’t have Marcos, I wouldn’t have such a big difference; but having him, what there was with one and what there was with the other was very different, and the treatment clashed a lot. For all these reasons, I ask for a meeting with her tutor, Antonia, to see what’s going on.
In first grade, they were teaching tens. I came from being in kindergarten, and I had taught her a lot of things, and Lucía was more or less on par, without speaking. It was such a big struggle to teach them things so that she would be more or less like her classmates… Because it’s very difficult for her to be the same, since she doesn’t have comprehension, and that makes it very difficult for her, but more or less she kept pace with everyone. When I have the meeting, I ask her: ‘And how are you teaching her about tens?’ She says: ‘I take, look, some little bags, like this, like this, and I put 10 in, and that’s it, but it’s just that here—referring to the mainstream classroom—she comes little.’ What I didn’t know is that she wasn’t coming at all.
After that meeting, at the end of March or April, I said: “Look, this can’t go on like this anymore.” So one day I went up to the classroom when I dropped off Lucía. They used to let you leave them in the playground and you could go into the school perfectly fine, even though they didn’t like it and didn’t want parents coming in, which I understand is normal, it’s their job, I respect it all, but I didn’t even think about that at the time. So I went up the stairs. I remember I had to pay for a field trip, because I had found out about it through the WhatsApp group, not because they told me from the school. How was I supposed to pay it? When I gave her the money, Antonia took it and said: “You should have given it to me earlier.” I said: “But how could I have given it to you earlier if I didn’t know about it? If I just found out from the other mothers, I can’t give you things beforehand if I don’t know about them beforehand.” And then I said: “Why doesn’t Lucía come into the classroom, here with you?” And that woman became totally defensive, but I hadn’t said anything to her, not in a bad way.
I swear on my children, who are what I love most in the world, that I have never spoken badly to any teacher at any time. I’ve wanted to many times and I’ve had to deal with many, here and there, but I’ve never disrespected them. That woman started saying:
—She doesn’t come into my class. She doesn’t come in. Of course she doesn’t come in, because I can’t handle her; because she makes me very nervous and I can’t deal with your daughter.
For me, that was a bucket of cold water, because I had it in my head that things worked differently and that it was unfeasible. I didn’t even think it existed, I swear. Call it innocence, call it whatever you want. I didn’t think that could exist and I said:
—But how can you not handle my daughter? She has the same right as all the children here.
—All mothers are crazy, you’re completely crazy. I can’t handle your daughter, I can’t, and I can’t have her in my class —and she was the tutor, the one who taught her the most classes—. I can’t handle your daughter, I just can’t, I can’t handle your daughter. She makes me very nervous.
And I ask her:
—But even if she has the same right?
—Even if she has the same right, I can’t cope with her. You are all crazy, all mothers are crazy.
And she slams the door, *slam*! And she slams the door on me. I was stunned and tears welled up. I thought, ‘What are you saying?’ It was absolutely unbelievable. I went downstairs crying and went to the Principal’s office, and the first person I met was the Head of Studies, and I told her. ‘What’s wrong, Belén?’ I said, ‘This is what’s wrong, I just came from a meeting with Antonia, asking her why Lucía doesn’t go to class…’ And she told me, ‘Well, you’ll have to sort that out with her.’ Okay, so I’ll have to sort it out with her then, I don’t know what you’re doing here… But at that moment I didn’t say anything to her, I went home crying and from then on, from that day, the day they told me they couldn’t handle my daughter, that’s when I snapped and said, ‘This can’t be happening.’
I used to vent a lot by writing; for me, it’s medicine like any other, and I would narrate all the experiences I was going through at school, and of course, they didn’t like that, but they couldn’t tell me it wasn’t true, or say, ‘Don’t write this,’ because it was very clear. For example, everyone is dressed in green, all the mothers have noticed, and everyone notices that mine isn’t. Or when you find out about a field trip, everyone is realizing that you’re just finding out about the field trip now. These were very obvious things, but nobody saw them as wrong; they saw them as normal.
Nothing happens at all. In my job, if I don’t do it well one day, they scold me, and if I do it badly every day, they fire me. Or if they treat my son Marcos badly like this, they scold the teacher. If I go and complain about my son Marcos, they scold the teacher, but with Lucía, nothing happens at all. With Lucía, and I imagine with most people with autism, from how much we talk with other mothers.(Rubén, Belén’s husband)
I don’t know what the administration did, maybe they did nothing, but after that, this girl quit. I’m not sure if it was for that reason, but I would say so. When she quits, we have no one for 15 days. Lucía remains in the ASD classroom, of course. There were times when they would bring her in at the beginning of the day, from nine to nine-fifteen, and if Lucía started crying or anything, she would get up and leave her in the hallway. That seems even worse to me, because alone in the hallway, without being able to speak, without being able to communicate, that wasn’t the place either. If not, you can call the PT or do it another way, but I think there are many ways to do things, and that one didn’t seem right to me. I found out about it from the children, because they would talk in the lines, and I would ask them, and of course, they told me many things, like any child.
A professional came who I will never forget in my life, Fina, who is there in May and June, and things changed completely from how they were. That’s when I found out about the excursions, I had an agenda, I found out what Lucía was doing, I met her and she told me they were working on this, they were working on that… Lucía was in the mainstream classroom all day. How can it be that with one she’s not doing anything, and with another she’s there all day? I realized then that it totally depended on the professional assigned to Lucía. Because Lucía was the same, and the administration was the same, they are still the same, and everything in Lucía’s environment was the same: the children were the same, nothing had changed, only that new teacher. With her, she went on an excursion and stayed overnight on one of those farm schools with animals. I still have photos.
It depends on the professional you get. There were also many absences, and when Antonia’s substitute came, who did a lot for Lucía, Belén realized that it’s not what they tell us either, that it depends a lot on that, on the tutor, on the teacher assigned. That’s when we saw that Lucía was very difficult, and of course, if she’s very difficult and nothing is done, then nothing comes out of it. We saw someone who, with a little effort, achieved things. So we were encouraged too in those years, we continued with everything we could. (Rubén, Belén’s husband)
Starting to feel uncomfortable
In the second stage, a more serious struggle begins, knowing a little more about what they were doing.
It changes everything, but it doesn’t last long, it lasts until the end of the school year in June, because Fina was covering for this girl. The second year begins, which was a battle, because I wasn’t going to keep quiet about anything anymore, I thought: “At least you’re going to know what I think, at least I’m going to say it.” Of course, in a very polite way. And second year starts with Antonia, with the same teacher who was there at the beginning, and she continues to do the same thing she did when she was in first year. The change was totally abrupt from one to the other. When the same teacher returns, the same thing happens again.
I used to sign Lucia up for, not all extracurricular activities, but always for some extracurricular activity. It seemed very normal to me that my daughter would go. I could afford one for each of them: one for Marcos and one for Lucia. Since Lucia no longer received therapies at six years old because they had ended. I had problems working full-time because I have a back problem, so that’s when a bit of a crisis also came with my husband, work, we were left very tight and we no longer lived the way we were living before, but we had to tighten our belts a bit, but I could afford that extracurricular activity. I remember I signed her up for modern dance, because Lucia really liked music and that was dancing, doing choreography to music and she would stay in her spot during the choreography. She was in modern dance for first and second year in the afternoons and, then, at the end of the school year, there was always a small performance where they danced and I accompanied her so she could be there.
It took me ages to get that teacher to do what she had to do with Lucía, it was very difficult, but to this day, she still writes to me to tell me how much she learned from me, because I was very gradual, but making it clear that Lucía had to be there. Because Lucía has the right to have an extracurricular activity, something that was very difficult in the following years, because modern dance ends, as there aren’t enough people, not enough children signing up. So I had to sign her up for something else and it was all very complicated. I signed her up for skating with Marcos and also for theater. It was very difficult for me, I spoke with the members of the Parents’ Association (AMPA) and they had a very good relationship with the Management, they are thick as thieves, they are very good friends.
What was happening? That everything I wrote on my social media was logically against the Management, so the AMPA members said: “Be careful with her, she’s going to tell everyone.” The president of the AMPA once told me: “Why do you tell things on social media?” And I told her: “Because they happen to me.” And she said: “But that’s not the place to tell them.” “No, it’s not the place to tell them, but if I tell them, they don’t pay attention to me, so maybe this way they will.”
Because many things have changed due to me sharing them on social media. Throughout the six years we were at that school, many things have changed, perhaps not for my daughter anymore, but for other children, and it’s been because I shared them on social media, like the end-of-year yearbook photo. Children, in addition to having the right to education, also have the right to extracurricular activities, and if those professionals are not prepared, then that’s not my problem; it will be their problem, they will have to learn it. I think I enrolled Lucía there because she had to be there.
Then, in fourth grade, she was in theater with Marcos, who helped her a lot. They put on a play in which I didn’t have to participate like in the dance, but she was a girl who didn’t speak, so she was there and performed in the play at the end of the year. These are small things that might not seem important, but they were to us, and for her to feel included there, too.
What social media contributes to her.Belén has received many positive things from social media. Then, on the path of activism, she has found many lifelong friendships, so I think that’s where she has even more gains. I believe the part that has benefited her the most has been many close friendships, a circle of acquaintances, professionals, and parents of 200, 300 people, but then a specific group of 15 to 20 people, wonderful for her, she couldn’t live without it. I see it very well. I think for people who are so active on social media, posting so many things daily or with so many followers, the percentage of people who criticize you, jump on you for anything with something negative or argue is small. (Rubén, Belén’s husband)
When she starts second grade, I tell Antonia: “Come on, Antonia, tell me what time she gets in, tell me what Lucía’s schedule is.” “It’s just that, I can’t give you the schedule.” “What do you mean you can’t give me the schedule? Tell me what time she gets in, what subjects, math, language…” “It’s just that I can’t tell you anything.” Because she didn’t attend any classes directly, but she couldn’t tell me directly. Lucía doesn’t tell me anything, and the teachers avoid me, they don’t stop to talk to me so they don’t have to tell me anything. Because, of course, I started being the uncomfortable one, and even though I say it nicely, I wasn’t going to keep quiet about anything anymore. Neither the AMPA nor the mothers saw what I was saying as right. It was a struggle, alone, against the entire educational system, so to speak. I got along very well with Marcos’s teacher, but that was it. And I start requesting meetings, submitting them through the registry.3
In the second year, I started a much more serious fight, also knowing a bit more about what they were doing, what was happening, what was wrong, thanks to Nacho, Carmen, Antonio Márquez, many people I started to meet through social media, who have been vital to me, but I achieved nothing. Lucía spent the entire second year in the ASD classroom; what’s more, I couldn’t even get the schedule. Any child is given a schedule; I wasn’t. I had to request a meeting with the administration, I requested meetings all the time. I could request them, it was legal, but they were useless. I remember I requested one with the administration and the counselor, who initially agreed with me and told me that we had to tell that teacher that Lucía had to be admitted, but that counselor also left in the second year, and another new one came who no longer agreed.
We have dealt with so many people, with different professionals each year, never stable, except for the PT from kindergarten who was there in the first year and left in the second due to all the problems that arose when I started complaining about everything that was happening. I started complaining to the administration, I started to formally report everything that was happening, and I achieved nothing. And the school year ended; another one lost. First and second grade were lost with this woman. Antonia says she’s going to another school, and we thought: ‘Hopefully, we’ll be lucky and the next one who comes won’t be bothered by our daughter’.
Disappear and don’t bother
I only achieved something when I wrote it on Facebook, Twitter, or in a blog post.
And another teacher comes in third grade, Juanjo, and practically the same thing happens, but a new special education teacher arrives who tries by all means for Lucía to attend all classes. She starts convincing the homeroom teacher, the music teacher… I once met this music teacher in the hallway and I said: “Why doesn’t Lucía attend music class, when she likes it so much?” Because she loves it and in second grade of Primary they were working with the recorder, with the xylophone and little else, they were simpler things than perhaps now in high school. I went to the principal’s office again and this time they did scold her. The AMPA (Parents’ Association) told me that the music teacher had been reprimanded, that she took a leave of absence and never returned to the school.
This special education teacher we met in third grade fought and even cried so that Lucía would attend classes, and I kept talking to her, as she was usually the one who stopped to talk with me at the door. Because this woman did stop to talk to us, and at that time another boy and a speech therapist named Estrella entered the ASD classroom, and she and the special education teacher, Silvia, worked a lot with Lucía that year.
She made a lot of progress. But she didn’t attend the regular class; she was still in the ASD classroom or the specific support classroom. When she was about to finish third grade, Estrella and Silvia told me they were leaving, that they couldn’t stand it at that school, and I said to them, “But why can’t you stand it?” And they told me, “You can’t say anything, but I’m going to tell you everything that happens at this school.” They were there for almost an hour, both of them, in front of me, telling me how badly the administration was handling Lucía’s situation, all the hardships they had gone through for Lucía to be admitted to the regular classroom, without achieving anything. That wasn’t an ASD classroom; it was more like: “Disappear and don’t bother us.”
They told me that if there was an end-of-year party at the school with water guns, everyone would have it in the main courtyard, and those with autism — the five from the ASD classroom — would be in a plastic pool, a very nice, beautiful one that the school bought, but in the back, next to the garbage bins. Lucía spent her breaks alone; I would sometimes go to see her secretly so no one would see me, and she spent them alone, every day. Do you know what it’s like to spend every day of your 6 years of life alone, in a separate classroom, because you make people nervous? They told me outrageous things, and they told me not to tell them, but today it’s impossible for me not to tell them. They had seen all the struggle I went through to get them to tell me the schedule, but what struggle? What struggle do I have to go through for a teacher to tell me my daughter’s schedule? If my son gets the schedule on the first day of school… The struggle was because, since she wasn’t admitted, what schedule were they going to give me?
Then I would ask them to tell me the hours she was in the mainstream classroom, because I know they have to meet a certain percentage of hours in the mainstream classroom, but of course, since they weren’t meeting them, they couldn’t tell me anything and I would get angry. I asked them to tell me what they were working on in class so I could help her at home in the afternoons, as I had always done. Was that so bad? They didn’t tell me. But how could they tell me if they never went to class? I just asked them to tell me what they had done in class and to tell me something, that Lucía didn’t talk, that six hours in a place without talking and without me knowing what was going on… I’m her mother, damn it! Okay, maybe you don’t tell me for five days, but at least on the sixth or seventh day, you’ll have to tell me.
So, in that third year, I did have a lot of help from the PT and the speech therapist, who did inform me a lot about everything, and I did have many meetings to see if I could achieve those things, but I achieved nothing, another lost year.
And why does Lucía have to sit alone in a separate place in the dining hall? Look, she’s a person, not an animal, she’s just another girl who comes to this school, who pays for the dining hall like everyone else and who should have the same rights as everyone else. Why does she have to be separate, if Lucía wasn’t aggressive? Because she once pulled a girl’s hair to get her attention, but that only lasted a very short time. Sometimes they told me: “My goodness, what a day Lucía has had today, I can’t take it anymore, I’m going home.” I understand that it might have been difficult to be with my daughter sometimes. I haven’t argued about that, because at that time she might have had more tantrums. She didn’t understand, she didn’t know, it was all very, very complicated, okay. But I am her mother, if you tell me that… What would happen if I were working at the hospital and said: “My goodness, your father, I can’t stand him. I’m going home because your father, who is my patient, whom I have to attend to, because it’s supposed to be my job, who has the right to healthcare, I don’t want to treat him.” My daughter also has the right to education, even if it doesn’t seem like it.
It was all like that, crying, having a bad time, coming home angry and achieving nothing, and time passing and achieving nothing; talking to the administration, talking, talking, talking and never achieving anything. I only achieved something when I wrote about it on Facebook, when I wrote about it on Twitter, or when I wrote a post on my blog. They didn’t like that, of course. You can have help or not, and I haven’t had it. So, third grade was another lost year. Of course, I understood everything, I was going crazy saying: “This is happening, but is it true that I see it this way or am I imagining it?” “But isn’t it really like this and are they doing everything they can?” “But these two girls told me everything in great detail…”
The courage to say what you feel when no one seems to listen.Belén Jurado and her family embody humility and the courage to say what you feel when no one seems to listen. Belén is the strength to show weaknesses without giving up. Even if you falter sometimes, she has woven a network, a lifeline of hearts that embrace her, love her, and cherish her whenever she needs it. Lucía is pure light, light and flowers, and colors, and silence that speaks, and words that convey more than the letters that add up. Four people who form a family whom I admire and adore, and for whom I will always be grateful to life for having crossed my path.(Fernanda Valdés, activist, friend of Belén)
As if they had a piece of furniture
Do you remember you have a student named Lucía? Disappear during lockdown.
Summer arrives, another year lost, and we move on to fourth grade, thinking: ‘Let’s see if in fourth grade we get lucky and the teacher who comes wants to be with my daughter, doesn’t make her nervous.’ It turns out that in this school there’s a teacher who has been working for a long time, one of the longest-serving, and I think they thought: ‘Well, let’s put him with Lucía in fourth, fifth, and sixth grade, and we’ll have her in the classroom the whole time, so at least the mother will shut up and leave us alone.’
And so Lucía’s years go by, until 6th grade of Primary, drawing in the mainstream classroom, in fourth, fifth, and sixth grade, every day inside the classroom, yes, but drawing. We continue with the same questions: ‘What are you doing?’ And we still don’t really know. Another new special education teacher arrives who is a disaster and does absolutely nothing — according to the inclusion assistant, with whom I got along very well—. I find out things. For example, the science teacher assigns a project for class, and Lucía doesn’t get it. I requested a meeting to ask: ‘Why isn’t Lucía assigned the project?’ I understand that Lucía can’t do it the same way as the other children, but maybe she can do it differently, she also has a right. I don’t know, I wanted them to tell me what they were working on, but I never knew. In reality, I never knew, at first, because they didn’t work much, they didn’t do anything. And I think in the end they did work on some things, like coins and that, but that’s all. They kept Lucía there, but as if she were a piece of furniture, and as soon as she wanted to leave or if she got up or did something that wasn’t ‘right,’ they sent her to the ASD classroom.
We keep asking for many meetings, we keep saying that, since she’s in, she should be worked with, not just be a piece of furniture. I’ve celebrated Lucia’s birthdays, I’ve done so many things, I’ve done my part, I’ve given my life to a lot of things and I’ve never had anything. Compared to Marcos, everything was totally different, there was no comparison between one thing and the other, not at birthdays, not at anything. Lucia would ask me to go to other children’s birthdays and I would have to say: “No, Lucia, we can’t go to any birthdays.” And over time I think: she didn’t go to a birthday because she never got invited, because she spent every day alone in the playground. It’s very important, I think it says it all, when a child doesn’t go to a birthday. It doesn’t seem important, but it is.
Every day I asked this tutor teacher: “What have you done? How has Lucia been?” And he would stop with me many days, but I noticed it was a bit like: “I’m going to shut you up so you don’t complain too much,” since he only told me: “Lucia has been fine.” But I kept finding out that Lucia wasn’t working, from the children in the morning in line, or from the integration assistant. So I would say: “But what’s the point? There’s no point in her being in the ASD classroom, but there’s also no point in her just sitting there like a piece of furniture enduring things and explanations.” You don’t have 20 children and mine does, mine has the same right as the others. “I have a lot going on each day,” they told me. “I’m very busy and I can’t.” Yes, I understand you’re very busy and can’t, but you can at some point, right? At some point, it’s possible.
Or when I went to meetings with the counselor, I would say: “Well, I don’t think it’s normal for Lucía to be alone in the playground all day,” because Marcos started talking and telling me that he saw her alone, that she was alone in the dining hall, that she was always alone. His phrase was: “She’s always alone.” And I would say: “Well, if she’s always alone, there must be some problem, because you also have to do your part so she’s not always alone.” And the response was that it was very good for her to be alone in the playground, because she had to let off steam from being in class for so long. Being alone in the playground for six years was great for her. In the end, they wanted to trick you.
Is the law being followed? I imagine it must be difficult, but well, then they should remove the law, they shouldn’t put in the law that everyone is equal, that there are minimums to be met. But of course, that would sound horrible: Who is going to vote for the one who puts in the law: there are a few of us who have certain rights and then there are a few others who have less, and this is better for everyone, because we optimize resources, and we put them on these and these others who are abandoned? Of course, no one is going to vote for that party, nor support that law. So, I would like, if it’s so difficult or impossible, for them to remove it, to state what they are going to do. That is to say, we are going to move on to this one, we are going to educate them, we are going to teach them some subjects, and these others we are going to treat like in a nursery: if they are thirsty, we will give them water, and the sun won’t hit them here, they will be in the shade, and we will have them play with puzzles. Let them say it like that. (Rubén, Belén’s husband)
The pandemic arrived. After Ayuso said we shouldn’t go to school, my son Marcos, who would have been 8 years old by then, started receiving emails with activities to do, simple activities. I know the school was in a huge mess because they didn’t know how to handle it. I understand, the situation was very difficult. But I didn’t receive a single email, not a call, nothing at all for Lucía until two and a half months later, and all because I wrote about it on Facebook. I wrote asking how it was possible that my son received an email every day, that they had a blog, that they worked with him, and that we heard nothing from any professional about my daughter until two and a half months later. That’s not possible. The day after I wrote it, the head of studies called me, apologizing.
If I don’t tell you to send me tasks now, it’s a minimum of: ‘How is Lucía?’ They knew about everyone else more or less, but they knew nothing about Lucía. It’s not an apology, doesn’t Lucía exist? Because I told her: ‘Do you remember you have a student named Lucía?’ ‘Yes, of course we remember.’ Yes, yes, because it was all very nice words, but in reality, they hadn’t remembered. Everything was like that and everything had to be fought for.
I had the contact of the support teacher, we had a good relationship and we texted on WhatsApp and one day she tells me: “Belén, they haven’t let us call you at any time. We’ve been forbidden to talk to you.” So, it’s not just that the administration doesn’t create a blog for my daughter, which I don’t want them to do, or send her an email saying she has to do these worksheets or anything. No, it’s that now all the teachers who are there — the speech therapist, the support teacher, and the tutor, the music teacher — none of them think to ask: “How is Lucía doing?” With Marcos, the difference was huge, because that school is very good for those who don’t have autism. Because for my son it has been a very normal school, the project for X, the project for Y, all very innovative, with tablets… If I had only had Marcos, I would tell you that school is very good, but with the experience I had with Lucía, it’s impossible.
It was quite a statement of intent. At the end of the school year, to top it off, to say goodbye to us, since no one had said goodbye or anything, and since there was no end-of-year trip that year and we couldn’t have a party with the children because of the pandemic, they decided to have a small party via video call. All the children would connect and all the children would read something, and to announce this party, they sent out a sort of photo collage where Lucía didn’t appear. I knew and was aware that everyone would connect, except mine because they hadn’t told her, but I spoke to a mother who told me by chance. These are things I think they could have told me, because she could have connected too, even if not all the time, at some moments. But no, Lucía was still invisible and a nuisance, she wasn’t just another student, she was the one who caused trouble. When I found out she wasn’t in the photo, I got very angry, honestly. That’s when the mothers started talking about the photos in the group, and seeing how little help I had received from them, I thought: ‘Look, I’m leaving the group, because this can only hurt me.’ Sixth grade was already ending, and I spoke with the teacher, I spoke with the administration again, by email, and I told them why Lucía wasn’t in the photo, how strange it was, and I told them: ‘Of course, since she’s never there, how could she be in the photo if she’s never there?’
Just then, shortly before, was when they evaluated her to decide where Lucía would go, and I think they didn’t send us to special education because they thought I would say something about it, write about it, make a fuss in some way. I think they were a bit afraid of that, and they sent her to a high school with an ASD unit, which is where we are now.
Mom, is Lucía going to high school next year?
One day, Marcos asks me:
—Mom, is Lucía going to high school next year?
—Yes, well… We don’t know yet. They have to see at school if she goes or not.
—And if not, where will she go?
—Well, there are two options: that one and some schools that only children with certain “difficulties,” like her, attend.
—Mom, does the school decide for all the children?
—No, with Lucía and some others…
—Well then, when it’s my turn to go to high school, I’ll go wherever she is. If it’s to a special one, then that too…
—You can’t go there…
—Gee, Mom, you make it so difficult… When it would be so easy to go all together.
Marcos, 8 years old. (Blog “Lucía’s Room”, 09/30/2019)
Convince professionals
Lucía’s right to education depends on a PT convincing all the teachers.
We came to the high school very scared, because we didn’t know what to expect, if it was going to be difficult for Lucía, since elementary school had been very complicated for all those six years. We expected high school to be really bad. But we arrived and, well, we have a PT and a professional. I didn’t know them much the first year, because the pandemic was still going on, honestly, and I only knew the PT, whose name was José. I can’t say this PT treated me badly at any time and the truth is I have no idea how he treated Lucía inside. He would occasionally go out with her, explain a little about what they were doing in class, but as far as I understand, Lucía still wasn’t attending any classes, she was still in the ASD classroom almost all day. Although the treatment in the first year of ESO was very different towards us —it wasn’t as bad or as aggressive—, things were more or less the same. They told me that because of the pandemic and all that, it was very difficult for Lucía to enter the class, so we continued with practically the same thing.
The school’s inclusion coordinator, with whom I had a relationship, told me that the speech therapist—whose name was Rebeca—and she were going to go to the institute with Lucía for the first few days to accompany her, and they were excited about it. But during the pandemic, all of a sudden, she stopped messaging me, and I haven’t heard from her since. I still see her, but she doesn’t talk to me. I don’t know what happened there; I think they gave her an ultimatum from the administration because one time I ran into her in the courtyard, she on the inside and me on the outside, and she told me, “If they see me talking to you, they’re going to scold me.” So, I stopped bothering her, or rather, I stopped having that personal relationship with her, so it wouldn’t affect her personal life either. And if that’s what she wants, then I don’t want anything either. In the end, José told me that it was impossible for him to get in touch with the school to have meetings with them, to get some information about Lucía.
All of a sudden, they gave her a girl and a report, nothing else. It was a bit of what I could tell them, but of course, since many professionals don’t believe mothers much, they wanted or needed more. I can’t say he didn’t believe me, but he needed these people from the school to get in touch with them to talk a little about Lucía. To this day, I know that it’s not mandatory to do that; the school just has to give its report or whatever paperwork it needs to give, but it’s not mandatory to have meetings. That’s something I’ve never shared on social media, but, for example, I shared it this morning. Because there are things I don’t share because I’m afraid, since my son is still at the school, but I’m going to tell everything, without caring about anything.
She doesn’t manage to get them to contact her, she calls the administration, they stall her. She calls again the following week, and they keep stalling her, until she gives up. She can’t get in touch with anyone at Lucía’s school to guide her a little or give her some advice, and ended up telling me that it was the first case he had encountered, that he had never known anything like it and that he would get to know Lucía himself.
So, the first year of high school, we continue the same, nothing changes, and in September of last year, a new PT calls me. I don’t know if this teacher left, but out of the blue, this teacher who had been there for many years, left. A new PT, Antonia, comes in, who is the one we’ve had this year. We’ve been very lucky with her, and it depends a lot on her whether Lucía enters the classroom. She told me to my face at the door when she took Lucía out once, that she had to convince the professionals to let Lucía enter her class, but she told me: “I’m charming them all. In other words, I’m managing to get her in.” We’re talking about Lucía’s right to education depending solely on a PT charming all the professionals.
We are talking about how much more difficult first year of ESO is for Lucía, who doesn’t understand many things, than first year of Primary, but if in first year of Primary they wouldn’t even let her in at any point during the day, then in first year of ESO, in a science class, it’s impossible for Lucía to keep up. But it’s her right to be there, to be in the class, and maybe she can be taught in other ways, because at home, Rubén and I teach her a lot of things and we are not professionals. Rubén works in construction and I am a nursing assistant, so we are not people with extensive studies or anything, but we achieve many things by insisting and by trying different ways, but when it’s not even attempted, then it’s impossible.
Convincing the professionals. For us, who are seeing it, feeling it, that this is the case, that you have to convince teachers for them to let her in, that the PT has to charm the music teacher, I don’t know… I can’t imagine being in a hospital and saying: “I won’t attend to the seven o’clock patient, their family will. I’m not changing their IV fluid canister.” Choosing not to, you have to go down the entire hallway, whether you like it more or less, but your job is to finish the hallway and have gone through all the rooms, doing what needs to be done. And we get the feeling that they couldn’t skip my son Marcos. I’ve never felt that Marcos is being skipped, but I’m sure it happens to other children, that it’s not just about disability, but about thousands of things, that there will be children who are difficult and it’s easier to ignore them, instead of thinking about why they are difficult. But well, with children with disabilities, it’s very normalized to do nothing and for nothing to happen. (Rubén, Belén’s husband)
This year, now in 2nd year of ESO, we’ve had things that I haven’t liked either, because although we’ve done better with the PT, there’s an inclusion assistant named Margarita, who is the same type of woman as those at the school, and something happened with her at Christmas. I drop my daughter off one morning, I go to the town hall, which is next to the institute, five minutes away, and they call me on the phone and say: “Belén, you have to come pick up Lucía.” And I say: “Why?” “Yes, because look, it’s better if you come pick up Lucía.” I finish my paperwork, I rush to pick up Lucía and she comes down. That day was already close to Christmas and there were days when the children didn’t go to class or took exams, and this inclusion assistant told me that I had to take Lucía, but I knew that day there was a theater performance there, they had said it before in some email and I had been telling Lucía every day: “Lucía, on this day there’s theater,” since she likes it a lot. Well, when I arrive to pick her up, Margarita comes down with Lucía crying and saying:
—Theater yes, theater yes —she says nothing else.
And I say to her: “But why do I have to take Lucía with me?”
“Yes, you have to take Lucía with you because she lowers her mask and cannot be in class with her mask down. You should be satisfied that we haven’t given her a reprimand.”
“But, Margarita, how can you tell me this, if Lucía spent the entire last school year with her mask down?” “Because it’s true that she would lower it and raise it, but Lucía is not required to wear a mask.” “At least let her go to the theater, please. I’ll wait at the door and when the theater is over, I’ll pick her up and take her home.”
—No, no, you have to take Lucía with you.
And I was right there in the institute’s hall, where the secretariat staff are, and they were telling me:
—You have to sign that you’re taking her.
—I am not going to sign that I am taking her, because I don’t want to take her and today is a school day. Lucía has to be here, like everyone else.
I saw myself there with the integration aide, the people from the office telling me to sign, and with my daughter crying and repeating: “Theater yes, theater yes.” And I started to get nervous, wanting to cry too. In fact, I started crying and said:
—But Margarita, why aren’t the others leaving and she is?
—Well, because the others don’t lower their masks, and on top of that, the others are bothered by your daughter sneezing with her mask down.
—Well, if they’re bothered, they should be the ones to leave, but because my daughter sneezes, you’re not going to kick her out of class, are you?
—Yes, yes, you have to leave.
—Well, if you say I have to go… I don’t think I have to go, I think Lucía has to stay and, at least, please, I beg you, just let her go to the theater, I’ve been telling you for many days. Let her.
—No, no, no, you have to go.
—So you don’t want me here.
At that time, I didn’t know the PT was out because she was on sick leave. All I knew was that Margarita had taken her downstairs and that the other classmates were upstairs in class, and she was the only one who came down there. So I came home with Lucía, crying a lot, I’ve rarely cried so much, because it was unbearable. I spent a Christmas that was horrible, thinking about what my daughter would be doing there, if they didn’t like her, if they kicked her out for lowering her mask.
I found out about the mask situation and Lucía is not obliged to wear one. So, there was no basis for that, but I went home with my daughter and for the remaining days of Christmas, we didn’t go anymore, because she told us not to. After Christmas, Rubén was here, and one day he went to pick her up and then spoke with the PT, and she explained that she didn’t know anything about us being kicked out. So, Rubén told her everything that had happened and the PT told him that she was not aware of what had happened. That she didn’t know and that she was on sick leave that day due to coronavirus and that the aide was afraid that all the students in the ASD class would get infected, so she started calling their parents, and it turns out Lucía was the first. It turns out the others also left, but Lucía was the first.
The institute isn’t exactly a walk in the park right now, but there is good will. Like this SLP, for example, who is very different from this inclusion teacher, who will do her job there, but I don’t know if she does, honestly, I’m not involved and Lucía can’t tell me, but regarding family interaction: zero, nothing, the worst possible way for one person to be with another. Because I work in hospitals and you can be one way with families or another, and she chooses to be bad to us.
Little communication with the family over the yearsRegarding communication at the institute, last year a little, much less than we would have liked, but much more than we expected, for it to be the institute, and this year there are two teachers there in the ASD classroom: one doesn’t leave and another one does leave and is very normal. We are very happy with her. But now she has been on leave for 15 or 20 days and now, specifically today, she went on an excursion and we know she returned with both arms and both legs and the clothes she was wearing, but we don’t know anything else. (Rubén, Belén’s husband)
For example, recently, this SLP [Speech-Language Pathologist] resigned again because she’s sick, and it turns out that a week ago they held a cooking workshop in the ASD classroom. We’ve been complaining all year that they don’t tell us anything in the agenda, that hardly anyone comes out to tell us anything. This has been the case with Lucía, and it continues to be the case to this day. We complain nicely, please, and nothing. Well, a few days ago, I was with a mother of a child from the ASD classroom at the door, waiting for Lucía to come out, and she started telling me that there had been a cooking workshop, that they had made some nuggetsof chicken and that they had eaten them just before leaving school.
So, Lucía takes her sandwich every day, which she ate at eleven during recess and around one-thirty she eats some nuggets of chicken. Well, I get home that day, and since I don’t know anything and nobody told me anything, not that there was a workshop, nor that Lucía had eaten some nuggets, so I give Lucía her normal, everyday plate of food. My daughter eats again for the second time, because she doesn’t speak… Because, of course, the other children went out saying to their mothers: “We ate nuggets“, I’m not eating today.” This mother tells me: “It’s because my son didn’t want to eat.” And I say: “It’s because your son can talk and tell you, but mine can’t, and since no one tells me, he eats twice.” So what did Rubén and I do? We wrote an email and since then, for the past couple of weeks, they write something in the agenda every day. The email we wrote them was friendly, we were saying, please, they had to tell us things, that nobody would like to eat twice because they couldn’t speak and that it shouldn’t happen again. Then they called us to apologize that same night, the PT, the one who was covering for the one on leave, called me that night to apologize and said to me: “I hope Margarita, who is the integrator, also apologizes to you.” And I said: “Well, don’t you worry.”
I knew Margarita wasn’t going to apologize to me. In fact, they didn’t have to apologize to me. If anyone had to apologize, it was to my daughter, who had eaten two plates, one after the other. The next day, the PT came out and we talked. She told me Margarita didn’t want to apologize, and I said, ‘Well, don’t worry, it’s okay, let her do what she has to do, and that’s it.’ Look how different this PT is, who receives the email, who listens to me and understands me, and after understanding me, she stands up for me in a way, saying, ‘Hey, if I’m wrong, I want to apologize to you, I want to understand you in some way.’ And then there’s the other one, who doesn’t give a damn and that we depend on that, on people’s goodwill for education. We’re talking about something very serious: you can’t eat twice because you don’t speak, you have to write it down somewhere, you have to say it somewhere. These are essential things that they take for granted that she’ll tell us, but they know she won’t, because they are with her every day.
The institute, until today, has been like this, with things like the Christmas incident and others like the PT, who pushes a lot for her to be able to, to join music, to play an instrument. We are violating Lucia’s right to education, but right now, that’s how it is, that, or go to special education. So, for now, we’re holding on here. Next year we’ll move on to third grade, and I suppose it will be very similar. We’ll be here until we can, until they kick us out again.
In my own words
I was the one who was in another world, and from then on I started to meet other families who were going through the same thing.
Regarding my more activist side, I always say that I started by raising awareness about autism and debunking false myths, this idea that they don’t want, don’t feel, live in their own world… When Lucía was diagnosed with autism and the school didn’t know what it was about, I started that way on social media. It helps me personally, but little by little I grew in that sense and also listened to other people, other families. When in 2nd grade we started with all this school stuff, I naturally began, in my own words—I’m not a writer, nor do I pretend to be, nor have I ever known how to be—to write in a simple way and with normal words about what was happening with Lucía day after day. I told everything that happened: if she was alone in the playground, if she wasn’t in the yearbook, everything…
From then on, I started to connect with many people and listen to many families who told me the same things I was saying. Impossible, I didn’t believe that this was happening to so many people, to so many children, I didn’t know that was the reality. I was in another world, I was the one in another world, and from then on, I started to meet a lot of families, a whole lot, especially when we did “The book and the flower.” That’s when I met many people who were living in the same situations as Lucía.
They asked me for help, and I often don’t know how to help; I’m nothing, I’m just a mother. I listen, that’s it. Now, for example, we are giving talks, and I am very interested in showing that this reality exists because hardly anyone knows about it.
Struggle, love, generosity, and humility.Belén, like many mothers in families affected by disability, is invariably accompanied by adjectives: brave, fighter, intrepid, tireless, and above all, unyielding. But all of them, far from being a source of pride, are an imperative necessity in defense of the frequently violated rights of our daughters and sons. But, moreover, Belén is pure love. She loves her own, Lucía, Marcos, and Rubén, but she also has pure love for everyone, those close and those far away, but especially for the most vulnerable girls, boys, and people.
Belén, thank you very much for the “Madres” project, for opening “Lucía’s Room” to us, your home, your life, and your heart, and for giving us the opportunity to witness how, without grand theories, but with words and actions full of wisdom and with your life full of coherence and dignity, it is possible to combat the daily pain of exclusion, of being ignored, of invisibility, while your joy, your light, and your great humanity shine through; in short, for your boundless generosity.(Concha Casasnovas, activist and friend of Belén)
I did this because it helped me to do it, but also to give a voice to many people, so that what is happening can be seen, because it is a reality that is very silenced, that nobody knows what is happening. That what we live is not education and that segregation is not just being referred to a special education center. Segregation is millions of drops falling day after day and people don’t see them, because in my son’s school, families think the school is the best, they think the principal is phenomenal… I’m amazed every time I read in the WhatsApp groups, because I think: “How can you say that? You don’t really know what you’re talking about.”
Light in moments of darkness.I met Belén through social media and have been a loyal follower for a long time. Belén Jurado is truly all of that, she is simplicity and humility. She also has a gift that comes from her brilliant intelligence and humanity. With that gift, she knows how to reach deep inside and stay there, which is why she has a very large and devoted group of unconditional followers. Belén has been a light in many moments of darkness, and although Lucía’s story is full of injustices, she has always known how to give it the place it deserves. Her voice, her life testimony, her determination in defending Lucía’s rights have always paved the way.
The other day, a mother of a boy who was in the same ASD classroom as Lucía at school told me, and he will be moving to high school next year: “Belén, did you know that we’ve been assigned to yours, to Lucía’s high school?” I said: “Oh, really? Then, next year, we’ll see you there. Let’s hope the professionals get in touch with the high school staff, because it wasn’t possible with Lucía, but maybe it will be with your son.”
Creo que todo lo que yo he escrito también ha servido para que las cosas hayan sido de diferente manera para otros niños que han seguido en ese cole, porque luego me lo han comentado. A lo mejor para Lucía no, pero para otros cursos que vienen detrás de Lucía, que habían estado en el aula TEA, hay muchas cosas que se han cambiado por yo escribirlas. Yo podía haberme ido a denunciar a inspección y decir: “Mira, está pasando esto”. También en alguna ocasión lo hice, pero yo lo escribía también mucho por mí, porque a mí me venía bien y porque yo sabía que ellos me leían. Lo sabía porque las de AMPA me dijeron que por qué escribía.
La gente es injusta, pero nunca te rindas. Un día, cuando yo era pequeña, iba paseando con una niña por una calle cerca de casa. De repente oímos mucho ruido y vimos a lo lejos que venían muchas motos. Cuando ya se acercaban, reconocí quién era… La primera moto era mi hermano (podría tener unos 17 años y yo 10) detrás de la moto, enganchado a la parte de atrás, llevaba una cuerda con muchas latas atadas que rozaban el suelo. Detrás de él iban como 15 chicos de más o menos su edad gritando y riéndose de él… Era de día y pasearon una y otra vez por las calles del pueblo. Una vez más, salí corriendo a buscar a mi padre, pero no llegué a tiempo. Cuando por fin los encontramos, estaban en un corro… Esos chicos lo rodeaban, él estaba en medio y se hicieron sus necesidades encima de él, en su abrigo nuevo que con tanta ilusión se había comprado unos días antes…
When my father scolded them, they kept laughing and wouldn’t stop saying, “He’s silly, can’t you see?” To which my father always replied, “Let that be the last time.” And he would cry, but it was never the last time; on the contrary, it happened more frequently. That day my brother decided he would never speak again; I couldn’t help him.
When it was all over, I was crying and said to my father, “Dad, we have to do something, I can’t bear to see this every day…”
When Lucía was diagnosed, my father told me, “Do you remember when we ran looking for Toni?” It might happen to you again with Lucía. People are very unfair, but never give up. Always ask for what is rightfully your daughter’s. Don’t give up.”
In these years, during which I saw that my daughter was not given what she deserved, I always remembered that, and one day I met Rafa’s brother. He was the brother who had managed to fight for his brother’s rights and never gave up, and I couldn’t stop listening to him, reading him, and even getting a hug from him.
To this day, my brother still doesn’t speak, and although I no longer think it’s my fault, I can’t stop telling everything they did to him, what he suffered until he lost his voice. Lucía also has no voice, but I do, and for the sake of both of them, for their dignity, I must not give up and fight for what is theirs. I learned that a long time ago.
You are very important to me because your words help me to be strong and not give up.
Thank you again, Nacho, I will continue sharing your words which I now also make my own, and which after so many years I can finally shout and turn into dreams.
A dream I have longed for since I was 10 years old (I am 40) and which, thanks to you, I am achieving. A big kiss
(Blog “Lucía’s Room”, 09/30/2019)
Present and future
A person’s worth is not measured by what you can or cannot do.
Lucía will be here in high school, supposedly until she’s 16. Unless they tell us otherwise at any point. And, as far as I know, there’s only one high school here, and we’re talking about Leganés, which has I don’t know how many thousands of inhabitants. It’s huge, and there’s only one high school here that has vocational training modules and transition to adult life programs, which are like workshops where they teach you different things: how to cook, how to iron… That’s the only option left after high school, and I don’t know if we’ll take it. The other option would be to go to a special education center. That is, after everything you’ve been through, after everything, you go to a special education center until you’re 21, which is when they kick you out. Future prospects, I don’t see any. I see it getting darker and darker. Before, I had a lot of hope and saw things differently, perhaps, but as I’ve experienced so many bad things, I don’t see much. I wish I were wrong, but there have been too many stones in the road. I was so deceived and believed things were going to be so different…
We went to all the places with such enthusiasm and being good people —because I think my family are all very good people—. We have suffered tremendous blows, one after another… And why? Because she has autism? Why? Why do they want my son but not my daughter? It’s just that to me they are the same, so does one need more help in some things? Marcos also needs a lot of help in others. I understand that Lucía doesn’t have language, has a lot of difficulty with comprehension, many things, of course, I’m not saying she doesn’t. But a person’s worth isn’t measured by what you can or cannot do. But yes, in society and at school it is measured by that, it is measured like that.
Uncertainty about the future.We were emotionally better in those years and held onto more hope. Now we have less, we see that this education thing is ending, that it hasn’t served as much as we initially needed and wanted it to. We are starting to see the future, which we don’t know very well what it will be like, but oh well. But we have a lot of knowledge about Lucía, about who she is and that, in the end, that is all that matters. (Rubén, Belén’s husband)
I wish I could talk about great support on this journey, but even people and professionals I thought could be supportive have ended up failing me too, and it has hurt me a lot. I can’t say that the other mothers at school have supported us. One girl was very nice to Lucía, but to this day there’s no relationship. The other day I ran into a classmate from school, and she greeted me, but didn’t even say hello to Lucía, who was right beside me, because Lucía, as she seems invisible to many people, they see me, but not her, even when she’s by my side.
I would have liked not to have to convince any professional for my daughter to be in a classroom, and for no one to convince the professionals for my son to be included.
I grew up in that environment all my life, with everything related to my brother, in the fight to also recognize the value of people, whatever they have. And when Lucia was diagnosed, I always thought the fight would be like with my brother, but I imagined it more in a social way, not at school. So, I have a strength that I can’t explain, that doesn’t allow me to stop doing what I do, which I know are simple, homemade, and personal things, that I have no idea about, but I believe it’s very necessary for this to be seen, claimed, and continued. Just like Carmen, Paula, Alejandro, Noemí, all those people do the same as me. Some do it one way and others another, but we are there rebelling a bit against what exists. We have no other choice. They don’t give us another option either.
About the author
I am Alba Aguilera Rojo, a young woman, a social educator, who has always been driven by social and educational issues. I currently work as an educator in a child protection center and I am a student ofMaster’s Degree in Social Change and Educational Professions from the University of Málaga. I decided to research more about inclusive schools and about women activists for the right to education.
By volunteering as an educator scout For many years, I have tried to commit myself to building a better and more just world, with the conviction that education is the fundamental tool for it.
Notes
- This is a special classroom for students with autism spectrum disorders.
- PT is the common term in Spain for teachers of Therapeutic Pedagogy.
- The expression “to go through the registry” refers to formally requesting the meeting, with a written document submitted to the school’s administration office and stamped with an entry date, so that there is an official record of the request.