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Ableism and care in the trajectory of an autistic mother



Title: Ableism and care in the trajectory of an autistic mother

Release date: 2/21/2022

Co-creation: Dienuza Costa e Valéria Aydos

City/State: São Gabriel/RS e Porto Alegre/RS

[intro music]


Olga Aureliano: Stories are good to think about. In this episode, Dienuza Costa tells (and sings) her life story, intersected by the experience of being an autistic, peripheral [from poor “peripheric”, away from the city center, urban neighborhoods] woman, activist, academic and mother. The songs lull us through the self-ethnographic script co-created, along with Valéria Aydos. Stay now with "Ableism and care in the trajectory of an autistic mother."


[intro music]


Valéria: I'm Valéria Aydos, I'm a light-skinned woman, with brown eyes and long, curly, light brown hair. I'm 48 years old, and I wear prescription glasses. I'm an anthropologist and my latest research interests have been on working with autistic people on experiences of co-produced knowledge. This podcast is one more of these experiences. In it I act solely as a mediator, as someone who thought, together with Dienuza Costa, about the production of her auto-ethnography. She talks about some central issues so that we can know and understand the embodied experiences of a life crossed by several social markers of difference, among them, autism. Stories are good to think about. Storytelling is also a way of bringing the feminine to the academy, subverting the positivist logic that ties down forms of knowledge. In her narrative, Dienuza talks about central themes for disability studies such as: ableism, intersectionality, care networks and interdependence. She also talks about the specifics of what we can call invisible disabilities, such as autism and the daily violence that autistic people suffer when they are made invisible, discredited and have their most basic rights denied. For production we have different strategies. In a first moment of conversations about the themes that would enter the narrative, when we chose those that talked about being an autistic woman, mother of autistic, in a city in the interior of Rio Grande do Sul. Then, in a second moment, Dienuza produced reports of her life story, exercising a free chain of retrieval of the memory of those moments. And finally, the text was read, worked on and permeated by new reflections and new elements that were not there, but that the two had already shared in two years of joint work. The narrative also has the central element in Dienuza's life and production of subjectivity: music. The songs chosen by Dienuza, not only talk about her from relevant moments in her life, but are also from Taylor Swift, who is one of, one of the hyperfoci of this woman that we are going to meet now.


Dienuza: My name is Dienuza da Silva Costa. I'm 35 years old and 11 months old. I was born on December 27, 1985 in the city of São Gabriel, Rio Grande do Sul. I'm a white woman, with short black hair, with a discolored streak that falls over my eyes. I have a mole, a small dark spot in the upper corner of my mouth. I am an autistic woman, mother of a 7-year-old autistic boy, I am a caregiver for my grandmother Nair who is 94 years old and lost her sight some time ago. I also took care of my brother Diego, who was visually impaired due to Type 1 diabetes. I am a member of ABRAÇA, the Brazilian Association for Action for the Rights of Autistic People, and a neurodiversity activist for the rights of people with disabilities. I am also a student in Biological Sciences, and I intend to continue my studies in the field of Anthropology of disability studies. Telling a little about my story, my brother, as I said, is called Diego. My sister, who is not of blood ties, but is a sister as much as my brother, was called Marilei. She is a nurse, and before choosing a profession, she helped raise us both. My mother was called Yara with a y, but she wrote Iara with I in honor of Mãe d'Água [the Mother of Water], right? Whose legend tells the story of a Brazilian mermaid, who enchanted men with her beautiful voice. Also, known as Iemanjá, the story of Iara has an indigenous origin with our ancestors, and as a History and Geography teacher, my mother had deep ties to our Brazilian and gaucho history and our legends. In addition, she was the daughter of Iemanjá, baptized, and her parents were married on the day that Iemanjá is celebrated, precisely in her honor. To talk a little about my father, he was a closed man, he liked technology and reading, he graduated in Economics, he was very fond of gaucho traditions and I was very attached to him. My father did his best, you know, to give us comfort, study and health treatment, when necessary, in addition to encouraging us to practice various cultural activities. He was very proud of his children, but he was very demanding, you know, regarding our school performance, in any activity we did. My brother lost his sight when he was 12 years old, but before that, he already played the 8-bass harmonica, including, in CTGs [Centers of Gaucho Traditions] and in competitions, right, across the State he also sang and played the guitar. I grew up with a lot of financial and even food limitations, because the priority of healthy food was for my brother, and I understood that, even as a child. In fact, I grew up seeing the differences between people as something totally normal. I didn't see him as having a disability. Even since he did things normally, I just understood, and remembered, his difference, his illness, right? Or his visual impairment, when I heard someone saying ableist things, or feeling sorry for him. In my thinking, like I think, of my grandmother’s, he was a person a bit like any other, with one difference, that he needed someone to give him support sometimes and to explain the things that we could see, and he couldn’t. I loved audio describing, especially movies, video games, soap operas. I believe that the naturalization of human diversity, and disability is the key to ending ableism. A child is not born with prejudice, they become prejudicial with what they learn. I lived alongside music since I was in my mother's womb. Loud music didn't bother me, it still doesn't bother me. I slept anywhere, during gaucho parties and festivals, and CTG dances. I slept under the table, a mattress, I slept in the chair, I slept in the car seat. My brother played for about 8 hours a day and mainly at night, and he also taught me to sing. Because I have hearing considered good, I learned the notes quickly, but not so much how to sing. And I've saved some 40 trophies that I played with singing music across the State. This story is not very pretty in my memory sometimes, since I lost several competitions with prizes, and a singing contest, interpretation of songs, already recorded, that is, covers, when I started to compete very young. My father always asked to see the spreadsheets, right? That it was a paper that the judges graded after announcing the winners. I always wanted to know where I went wrong, that is, since I was little. In the end I got high grades and sometimes higher than the competition, in the written test, when it was a question of traditional garments, right? About Gaucho history. In dance, in the events I participated in and everything else, but during interviews I lost grades for not looking into the eyes of the judges, for not understanding some questions, for expressing myself directly, which was considered impolite. And at the beginning of the learning process, of musicality, I had enormous difficulties in the question of interpreting a song, that is, what the author felt. Justly, I who didn't even understand my own feelings. So, it was with the reciting of poetry… and it was even harder for my brain to speak with exaggerated intonations, which I didn't even understand where it came from. Because I couldn't express myself in such a sentimental way as I saw other girls doing. So, over the years, music has remained my therapy, my refuge, my biggest hyperfocus. Just like autism, activism, disability rights, as well as the anti-ableism struggle, inclusion, and accessibility, which I continue to fight for until today. Since 2008, I have been hyper-focused on international music. And together with her and my father, I got to know Taylor Swift's songs. This is part of me, because each song of hers reminds me of a moment in my life, and many times accompanied by it. Normally this helps me get over my pains and longings, and sometimes I hear and remember. I listen to the same singer's albums every day. It's a ritual. It's the autistic routine. And if someone messes with this, it bothers me a lot, right in that moment. Now, while I write, my husband takes the opportunity to listen to something different. My son does the same thing as me.


[Dienuza sings Taylor Swift’s song Long Live in English]

“Will you take a moment?
Promise me this
That you'll stand by me forever
But if, God forbid, fate should step in
And force us into a goodbye
If you have children someday
When they point to the pictures
Please, tell 'em my name

Tell 'em how the crowds went wild
Tell 'em how I hope they shine

Long live the walls we crashed through
I had the time of my life with you”


Dienuza: Part 2. Childhood and school trajectory. My childhood was a little different from other children and I could see that clearly. The way I acted differently, how I behaved in a peculiar way, was something always pointed out by my parents, by my family, by my aunts, by the teachers as something wrong… or something correctable. The fact that I liked things [that people] called “adult things”, you know? That... I didn’t like to play, that I liked to read books, that I didn’t like to play with other girls, or children in general. My stims were very demanded upon, especially in school. And this bothered me a lot. It felt like I couldn’t be me. And since I was a child who didn’t like to go to the public square, the park, I was even more strange. I liked to construct a barbie house even, but then I would get tired. I wouldn’t even end up playing [with it]. I always had a lot of difficulty with play. I was interested in concrete thinking, put into action. Or rather, for a child it would be the process of putting a rug on the floor of the patio of my grandmother’s house, where I decided to live at 6 years of age. It’s what I had fun with.

The wooden and plastic furniture imitating the original, since I couldn't buy the real thing. It made me spend a lot of time, measuring space, putting everything in perfect order for me to consider it in my imagination, the house of my dreams. However, when I finished putting together this dream house, I was exhausted, and I don't think I wanted to play anymore because I didn’t see the point in it… in those dolls. And I wouldn’t even end up finishing the decorations. In this, I didn’t have any friends, because my peers didn’t want to play with me. Generally no one understood my tiredness for interactions. Sometimes it would even cause fights with other children. I thought it was normal to do this. I thought that the neighbor was wrong in insisting that I should want to play with her. School then was a process that was a bit complicated in my life, right? I don’t forget the meltdowns… what they call “crises”… that I had… and from everything I heard from peers when it happened. I was in preschool for a short time, like a week, because I couldn’t stand my peers screaming, crying, speaking loudly among themselves, nor with me. I was already literate since I was 5 years old, or earlier, so I thought everything was really annoying/boring. I hated painting, drawing, and abhorred recess. This happened daily. And I spoke to the teachers and principal that I didn’t go to school to play. I wanted to do math, write, and read. And today painting is a problem because I don’t know how. Definitively I hated being in a school environment. Since I couldn’t stand the noise, I couldn’t stand being outside of my comfort zone which was my house, my room, or other places I liked to go. Until one day, due to so much crying, they called my parents who ended up pulling me out of school. It wasn’t a very good thing, the punishment that occurred. I had the right to play, I had the right to TV, but… I had no other way, because the next year I went back to school, straight into the first grade, and it almost happened all over again. So, every start of the year was very difficult for me. Changing routine, changing the classroom, changing the teacher, changing peers, always ended up in a meltdown, sometimes even self-aggressively, which would make my father go there and take me out of the classroom by the ear, while my classmates would laugh at me. “Ah, she must be doentinha [sick in a diminutive form], retarded." I heard. Remembering that there was little knowledge about sensory load at the time. There was nothing about inclusion. And then there was a lot, you know, little knowledge about what overloaded sensorially, you know? of a child, an autistic person. So, we were treated like problematic tantrum children, right? Because it was very difficult, for example, especially for me, to be in a classroom, away from the people I liked, and close to strangers who wanted to make a lot of noise. It bothered me. And these problems happened until the age of 9. [inaudible]. At some point in this process, I don't know for what motive, probably because of the school's recommendation or something. My mother took me to several doctors, until we found a child neurologist. Today known as a pediatric neurologist. I did several tests, an electroencephalogram, mainly which showed an impairment. Well, I don't know how to go into those details... uhh, but it's something to do with the prefrontal cortex, so I had ADHD too, and in the end, I ended up getting diagnoses of Pervasive Developmental Disorder, Childhood Disintegrative Disorder. And I always ended up having some kind of different doctor or doing an electrocardiogram, which was something that bothered me a lot, and to this day I don't know exactly what I did, but then I found out that when I was a child, I had seizures. So maybe that's why my mother sought so much professional help. Unfortunately, I don't know much about this phase, right? Because whoever could have told me about it is no longer alive. Then in adolescence they started to call what I had Asperger Syndrome. Finally, I got one that, I got a name that was nicer. After an electrocardiogram with a family cardiologist, I remember, then, that I was prescribed the first anxiolytic and soon I was taking antidepressants, at the age of 12 when my brother died, due to complications from diabetes. And since then, I lost, right, my friend, my support network, who explained the relationship between the world and people, I was a little lost. And then came the medicalization, which is what happens to this day. Looking for a remedy, looking to treat a pain that is not curable, like autism, is not. Before the diagnosis of Asperger's, my parents put me in piano class, singing class, poetry class, Rio Grande do Sul history class to compete for the State’s folkloric contests, as I have already mentioned. And all this time, despite the information about behavior at school, which never ceased to exist, I always had good grades, I had some difficulty in math, physical education and arts. Playing has always been a very complicated thing for me, and I was also that so-called boring student, because I asked a lot of things, to make sure I had heard correctly. And yet, I was chosen to be the valedictorian of the eighth-grade class. And at that moment, precisely because of that, I ended up developing nervous gastritis, the depression got worse, the insomnia came back. And I ended up sleeping in class, because I studied in the morning and in the afternoon, and that made me exhausted. It was promptly a reason for my teachers to complain to my parents. If I didn't say much, they called them; if I didn't say anything, they called urgently, if I said a lot, they also called. They went to the extreme of asking my mother, if I used any kind of drug, that she would take care of it, she asked them to take care if I didn't drink or do something hidden, since sometimes I fell asleep out of nowhere in the classroom. In my school they didn't understand that I could be talkative, proactive, hyperactive, intelligent, sometimes only for a certain period, or if the subject interested me. Afterwards, I couldn't take it anymore, I kept quiet, I wanted to go home to sleep. It happened too because I didn't get enough sleep. My mother didn't talk about it at school, because she was afraid that I would be excluded and suffer prejudice from teachers too, I don't know, she never said that to me. But she chose. As far as I can remember, the school didn't know about my diagnosis, and if they did, I wasn't informed. During high school, then, my performance decreased, the school average was seven, then it turned to assessment A, B, C, D and skills. Although I didn't fail, I wasn't better in some subjects, like arts, as I said, chemistry, were the only ones I needed to do summer school. At the time, we took a test called PEIES, I'm old, at the end of the third year, we chose a course at UFSM, Federal University of Santa Maria, and depending on the grade taken each year, and the essay that was of the last year, we could then go straight to the University, without taking the entrance exam or any selection process, remembering that at the time there was no ENEM [National University Entry Exam Process], right? I did it every year without studying any, not a single year and I slept during the tests, due to the overload, I would black out, then someone would call me, give me a coffee, I would come back. Even so, after the final result, I had a party with the approved colleagues, I saw each one in their area, and I didn't even go to see if my name was on my list, in the list of those approved for the course I chose. I went to sleep, suddenly, my colleague knocks on the door, congratulating me, because I was approved, but I hadn't even looked, because I was already sure I hadn't. And then it was a very good surprise, both for me and for my physics teacher, right? Who said I would never pass anything, but I liked physics, I didn't like him. In addition to getting a good grade, in addition to getting a considerable grade, right, in the selection process, I was chosen again to be the valedictorian of the high school class, at Colégio URCAMP, here in São Gabriel, in 2003. And best of all: the party graduation was on my birthday. And then comes the saga of an autistic woman's higher education.


[Dienuza sings Taylor Swift’s song The Lakes in English]


“Take me to the lakes where all the poets went to die
I don't belong, and my beloved, neither do you
Those Windermere peaks look like a perfect place to cry
I'm setting off, but not without my muse
No, not without you”


Dienuza: Part three, university. Yeah... I passed the selection process so to study an undergrad Physics at UFSM, however, I wanted to study Medical Physics. This course was at a private university, with a lot of effort, so my parents paid part of the course, but even though I loved doing what I did, I realized their difficulties providing for me, staying in a different city, paying rent and without me working. During a vacation I spent in São Gabriel, my father had a heart attack, spent weeks in the ICU, then went to Porto Alegre, so I ended up dropping out of the Santa Maria course to take care of him, to be closer. And I don't regret it, I ended up giving up, so I went back to São Gabriel. In 2007 until 2011. And things got worse for my father, and for my mother, my mother had a stroke, she was almost completely paralyzed and my father had a heart attack again, until in July 2011, my mother died in my arms. And two months later, so dis my father. Before giving up, then, from the Medical Physics course, I wanted to report something that marked me during this period. I was doing a subject called Physics 1, this course, we obviously learned some concepts related to Classical Physics. We did a lot of calculations and experiments, there were only five students in the class, but I noticed that the teacher had a certain predilection for asking me questions, and he asked me to solve them on the board, explain the results and etc..., I would sit on the first class just so I wouldn't be distracted, but inevitably, it happened after about 30 seconds, I think. I didn't usually get his questions wrong, but I got nervous, it got in the way of explaining, in short, being quiet, immobile, was what made me spend all my attention, control my body and thoughts, hindered my understanding of the class. Who doesn't like to swing their foot sometimes? This bothered me a lot, not being able to do it, even at a time when I had a discussion with the teacher, for receiving a low grade in a question that I answered correctly, but not in the way he wanted me to do it, because I was objective in the answer. I immediately left the class running to avoid having a meltdown in front of the class. A few days later, one of the professors who was the course coordinator calls me into the room. He said that he had noticed that I had a different way of communicating, of learning, despite being very intelligent, according to him. And I also expressed myself differently than he was used to, a question mark because I don't understand what he called being used to it. He asked me to seek some psychological, pedagogical support, because he thought that even though I didn't look away from the board, in his explanations - in his words - I didn't pay attention to what he was saying and that could be an indication that it was also attention deficit or something else. Remembering that I didn't take my reports, because I imagined that it would harm me more than it would help and we also have a certain internalized ableism, thinking that when we are going to talk about what it really is, people will start judging us for it. And that takes a while to be undone and understood, I'm glad I understand today. Coming back, moving forward in the case, I took ENEM for Biological Sciences, then, Bachelor's in 2006; and in 2007 I started in UNIPAMPA. At first it was a big shock with the reality I was used to in high school and with the few people who were colleagues at the other University. The class had many students, and I was increasingly overwhelmed. As I had reported, insomnia was something that was part of me, I took many medications I was still taking when I entered the University. The neurologist prescribed something, the psychiatrist prescribed something else, the endocrinologist prescribed something else, in short, I took a lot of drugs with a black stripe, for the most diverse conditions because they also did not understand what it was. Some of them felt sick, but even so, some doctors insisted and this happens to this day, unfortunately. Not with me, but with autistic children, with autistic adults, with anyone with any neurodivergence or disability, neurodiversity or disability. So, obviously these medications ended up affecting my performance of the dozens of medications that I had already been prescribed, thinking that what I had was curable, only from the years continuing after I was an adult, but at the time I was a guinea pig, they still do this with people with disabilities today, mainly autistic. Now, interactions in higher education were something that traumatized me in the first week. I really didn't understand the social rules of those people. I didn't understand, because there were groups that spoke badly about each other, and I started having a panic attack, some teachers were extremely unpleasant, they always put me in front of them, with the class glued to the test, claiming that they were going to cheat on me, because I got high grades. And I ended up doing poorly, it was the opposite, because sitting apart from the others, I was already ashamed, and the teacher watching me what I was doing, I couldn't even think. Then came the jokes from colleagues again, once again the ableism appeared. Until a group dedicated themselves to badmouthing me, accusing me of things I didn't do, including cheating, it was a horrible experience, and to this day I haven't had contact with those people, nor do I want to. But there were some that I am still required to interact with. I also had a teacher who humiliated me in front of the class, and kept yelling at me in the hallway, that I was ignoring him, right? It made him angrier. All because I couldn't take the test on the day, he started screaming and saying I was making a clown out of him. Despite classmates trying to hold him back, he already had a history of aggression against another teacher. And he did, he spent the whole class trying to bother the other teacher in the next room, basically he wasn't a person who was in his perfect... who was in perfect condition to teach, right? Then he came to say, screaming at me, out of his mind, saying that I was already a topic in the teachers' lounge, that I had a reputation for being weird, that I pretended to have problems to gain advantages, and that my intelligence was only because of the medication. The same tried to prevent me from doing one of his course’s for having failed a previous course, but they had no connection, they did not connect with one another. I had a meltdown then, in front of my colleagues, and I ran out of the room, crying, an adult doing this, anyway... Soon after, he came to apologize, saying that he knew I knew a lot, but that I ran away from things, and that irritated him. He wished me well, anyway, he had more problems than me and I started not to want to go to class anymore. Especially in the academia, I ended up staying away, right? From academia for about 5 years, I preferred to leave, almost close to graduating because I couldn’t, it didn't do me any good, it was not making me be well, right? So, at that time, I took a course, taught English, worked with some things and then ended up getting married, and my son Arthur was born in 2014. And in 2017, I decided to go back to the University, this time studying an undergrad degree in Biological Sciences, despite I'm afraid to be in a room full of noisy children and teenagers, right, it was my problem in childhood. The experience of motherhood brought me a greater tolerance for noise, dealing with the unforeseen, with the routine that changes all the time, creating a new routine based on his things. Not necessarily my things, as it always was, so it wasn't that easy, mainly because I didn't have a support network, right? Not having a mother to help me, teach me what to do, a grandmother who was too old to help me, so I learned to do everything myself. As a mother, while his father worked, so this was a big challenge, then understanding how a child worked, who was my son, but who I was still getting to know. And after a while, he went to daycare, I already suspected, right? Because he had a 50% chance of having, of being autistic, according to genetics, it's obvious. So, I put him in day care so he could interact more with the children, because he, no, he didn't use to try to talk, but he liked to sing. And I went to class in the morning and in the afternoon, just like he was at school all day. And there were many times that I had to leave early and had problems with some teachers. Motherhood is also an obstacle at the University, it is often a form of exclusion, including. Some teachers didn't accept that sometimes I had to leave early, because they called me all the time, because Arthur was not oralized, look, he took a while to start talking, and because they didn't understand what he wanted. He cried a lot, so they left him in a crib while the other children were playing. The principal would call me, I had to wait for the next bus to leave the University to pick him up. Then I decided that I wasn't going to give up again. With these difficulties, then, I went and started to seek therapy. It was the therapy I started in 2017, kept me, kept me until now. After really seeing so much ableism on all sides, having lived so many things in life like that, which led me to think that I would never be able to do anything productive again, it led to a very strong depression and even an attempt to commit suicide. Even after being a mother, I had tried it before, for the same reasons and before that it was a taboo to talk about, but the truth is that it affects a large percentage of autistic people, people with disabilities, peripheral black people, especially women. Because we don't see easy access to mental health services for free, right? Usually what you get is medication, a consultation and not therapy. And therapy is something that doesn't come cheap, so people with disabilities and, as I've already said, black people, peripheral people and a lot of people can't deal with all this and end up taking it to the extreme. After I started to understand who I am, to accept who I am, to stop policing myself in my behaviors, my way of speaking, my way of being, that saved me. I can tell you that therapy saved me. Just like music, which is also my therapy.


[Dienuza sings Demi Lovato’s song Anyone in English]

I tried to talk to my piano
I tried to talk to my guitar
Talked to my imagination
Confided into alcohol
I tried and tried and tried some more
Told secrets 'til my voice was sore
Tired of empty conversation
'Cause no one hears me anymore

A hundred million stories
And a hundred million songs
I feel stupid when I sing
Nobody's listening to me
Nobody's listening
I talk to shooting stars
But they always get it wrong
I feel stupid when I pray
So, why am I praying anyway?
If nobody's listening

Anyone, please send me anyone
Lord, is there anyone?
I need someone, oh
Anyone, please send me anyone
Lord, is there anyone?
I need someone

Dienuza: A few more accounts of the incarnated experience of ableism, right, suffered by a disabled life and by social markers of race and gender. And some accounts of the caretaker/caregiver and the deficient motherhood. I grew up not knowing what ableism is, at least the word, right, but I knew that there was prejudice against people with disabilities, prejudice against people with disabilities. But today I can still remember a few times when I noticed when this was happening. In fact, I was just naive, when as to what is something bad coming from other people, I hardly notice, especially when it comes in the form of some irony, sarcasm, joke, smile. And what in adolescence was a reason for laughter and jokes among friends, fooling around, in adulthood becomes a reason for trauma, many bad consequences even in professional and academic terms. Not only for me, but for many autistic people I know, that people have a lot of suffering, still trying to fit into the patterns dictated by neurotypicals. I was raised to be an example of a typical girl in Gabrielense society, a small town, right? That's how it worked, and it still works. And then I forgot to comment, right, I was poor, I still am, but I lived with people that we call “high society”, which is not really high, right? From my city. I ended up being forced to do that, you know, I studied at the same school, living with the same groups, but always out of tune, just because of taste. I've always hated the rules I was forced to follow. When I entered the Licentiate course, as I had already said, Arthur was 3 years old, we were looking for a diagnosis so that he would be entitled to a monitor. That's when I decided to go back there as a teenager, seek my diagnosis, again, I already knew I was an autistic person, but people always doubted that, because I hid it for years on end, who I was. Exactly to keep that image of a well-mannered girl and everything else, “gifted” as we say here. However, with the arrival of Arthur, we could no longer let him feel everything I felt, that he would not accept his stims, that he would be scolded by his body functioning differently sensorially, motorically, that he would simply accept being himself, despite the demands that he will face and that he already faces. It's a violence that leaves marks, just as it left marks on me, and to this day I can't get out of my head or change some behaviors that hurt me and that still do, but which I still repeat unintentionally. I wanted my son to know, which I already knew, that he was also autistic, that he was proud of himself and of me, so we embarked on this process together, again. At 31 years old and with therapy, I didn't hide anymore, I acknowledged who I am, I started to go after my son's rights, especially when he was in school and also my rights. I learned legislation, researched, later what I could about it, and the doctor who diagnosed me back there when I was a child was the same one who looked at my son and after a while and said: "- You already knew he is autistic, as well as you are autistic.” And as at the time I didn’t understand much about autism and it wasn’t even a very publicized thing, “the first diagnosis was not the one I gave you”, words of the doctor, “today I can help your son in a way that I couldn’t help you so much.” And that stuck in my head and she was the one who ended up helping Arthur in the beginning. From then on, he started to have access to a support professional at the school, and to the resource room, but it was not that easy, it was a fight marked by many bad things, mainly ableism, prejudice by social class, including this one even seemed to be stronger. I told you briefly, right, some facts so that it is possible to understand my trajectory in the struggle for inclusion and accessibility. The fact is that I had to spend the night studying legislation, both municipal, state, national, human rights, the Convention on the Rights of Persons with Disabilities so that I could argue, you know, with whom there was always someone to try to say that it was not right. So, I had to understand that the law is just a piece of paper, or that it's on paper, it's not good for you to put it into practice. All were phrases that I heard, but I decided to go anyway I was going to guarantee my son the rights he had. So, he got all the professionals, right, specialized educational assistance, speech therapist, psychologist, psychopedagogue and occupational therapist, among others. Despite having rights, it wasn't all the items I got. Because sometimes I heard that my son didn't have an autistic face, by the way, this phrase is said a lot, right? As if autism looks like this, how does diabetes look like this? I don't know what the autistic face looks like? But it's the phrase we hear a lot. And I don't know if that would change when he grew up, but I needed to guarantee all this here at the Municipal Department of Education. After a lot of struggle, he managed to be in an inclusive school. So, when I joined the inclusion nucleus, I dedicated myself to studying the entire pedagogical project of the course, right, the PPC and everything that involved inclusion and accessibility. All the cases I had on the Campus, all the publications at the University related to the subject, from the Universities of Rio Grande do Sul and Brazil, from abroad, everything I could do to improve the place, the place where I was, with what I had to do. I entered without knowing anything about the functioning of this small nucleus and left there with many happy memories, and some sad and good bonds that I created with colleagues called students, but who for me, are colleagues, and a lot of determination to fight more and more for the accessibility inclusion. And for people who, at some point, did not fit the parameters required by a higher education course. In fact, UNIPAMPA's Higher Education, which could not see the incredible potential of each of the students, who sought help in the nucleus; for failing, for getting low grades, for not understanding the content, or for being subjected to medieval teaching methodologies, from teachers who only sought results or publications, numbers for theirs CVs, without worrying about learning or how to teach these students. But I want to make it clear that this is a specific case of UNIPAMPA Campus São Gabriel, at that time, things now I know have changed, that is good, because someone had to suffer a lot for that to happen. But I'm glad it happened. And it started in 2018 and I also remember that all the scholarships I applied for, I had enough grades to get the job, not just scholarships, especially at work. Scholarship, it wasn't meant to be, but it happened. There was a question that is very common, right, for many mothers, “who will take care of your child when, while you are at the University?”. Until one day, I saw a resume these days, a São Gabriel company asking for an employee. The resume should have a photo, it asked if it was a woman or a man, if it was a woman, if she had children, how many children she had, how old was each child, and if she had a car, and if she was married, divorced. And that's not a resume, right! I don't know. And then it still says like this: choosing the type of position, and that was not necessary, no specialization is necessary for any of the available positions. So, the question: for what? It is because obviously an older person will not be hired, a person with a disability much less, a person, a mother with 2 children even less, because it asks the number of children the person has, and who will take care of the children and the age of the children, what does it matter to the company? A lot, right, in capitalism, money is everything, so! People with disabilities do not earn money for companies, they even avoid having the vacancy sometimes, just for that quota, to have a tax discount. So, we know that things here in Brazil are not easy, but we have to fight for them the way we can, and the law is there for that. Anyway, you know, I entered the inclusion nucleus much more for financial reasons, right? Working 20 hours a week, earning 400 reais, right? This is the situation of university students in Brazil, given that the University is [inaudible], so how can a person work and study? They still think, they complain when we charge an increase in the value of the scholarship, and we produce a lot for them, they will be the first authors and we are there alone, right, with the workforce of those who write and think, more than who is in charge. Imagine how many people with disabilities who don't, sometimes have no knowledge of the law, or of certain things, it's much more complicated. They can't even get recognition, because they think that a person with a disability can't be intelligent, can't be capable, and they don't assume ability at any time. When it is right for any educator to assume the ability to learn in some way, because we always learn, we just have to know how to teach. Anyway, I ended up leaving the nucleus in love with the subject, it was already part of my trajectory since I sought my son's rights. It was then that I realized, that I also needed these rights, to know that at least theoretically the law was on my side. Making a summary of my life, as an autistic woman, in terms of barriers, I found them to be the most discreet, the most blatant that excluded or completely ridiculed me, prevented me from having a formal job, a college course with reasonable adaptations, a report - even hating this word - a medical report, a diagnosis, right, that would guarantee these adaptations. My effective inclusion in society, as well as accessibility, would allow a life without barriers and perhaps more successfully. I started talking to teachers, presenting my, my, my demands to sensitivity to sound, to the sound of conversation, to some light, to basic things that prevented me from concentrating on learning, for example, the math teacher, he allowed me to take the test at a different time and in a room by myself. Then I managed to pass, finally, after failing several times. So, these are reasonable adaptations, this is a way of inclusion. And there was also, for example, a case of ableism, of sexism too, when, you know, I was an autistic woman, mother and university student. I decided to travel to participate in an event, in which my work was approved, right? And then came the moment when I was asked, “but you go without your husband, does he let you? Do you know how to get there? Why don't you stay in the dorm instead of staying in the hotel alone?” These, these were just some questions I heard from a person, right, in a superior position during this trip. These questions show how much we women, especially with disabilities, are infantilized and treated as a man's object, right? That you have to be allowed to go somewhere, this is still very much ingrained in people. It is very common to think that people are helpless, especially in my case, that I chose to stay away from the noise and go to the hotel I chose on the Internet, I went alone, the same way I went to present the work. I went to take a mini-vacation, because I'm a mother, right? Tired. But this was the first of many other events that I participated and in some of them I had no problems, quite the opposite. I was very well received. One of these events was in RAM, where I met Valéria, right, my duo on this project and where I felt more at home than anywhere else I had been, right, at events. But also, there was another place I went, that I was criticized, for having gone to present my work and leaving the child with the grandmother. It was me and my husband, who also studies at the same University, and we left our son, our son, with his grandmother, normal, the couple needs to go out too, but it was work at the same time. They even told me that I was lucky to have a husband who put up with me, called me irresponsible and also wanted me to come back the same day. Don't spend the whole weekend enjoying some leisure, atypical mothers seem to be forced to never have a moment of leisure, I think most mothers go through this. Even if it involves work, an autistic woman also has to be grateful for having a neurotypical man who accepts “the strange one”, whatever! Right? But the reality is that a lot of people think it's a blessing that someone wants us, that's our sexist and ableist society, the opposite doesn't seem to exist. Sometimes, then, everything we hear in life and we live like that, right? Like the same time, right, as a woman, as a mother, as someone who is trying, despite all the barriers, to study, a degree is what is also a privilege still in Brazil, because many women, many black mothers, from slums fail to do this education. And whose fault is it? It is the government that cannot take them, give them access to this salary in their own way, have an income and be able to education. And these are situations that will get complicated and will be just clippings that are sewn together, right? And forming a major social problem that we still have. And speaking personally, you know, of everything I reported, a lot, a lot, I couldn't talk here. But I think, I believe that my academic, personal and social performance is much better than many people think. Than a lot of people who think “the weird one" can't. Maybe what I get is not what they think, which is good. And here, for example, talking about it, I think it's good for me, while many will think it's a, silly, a, it's activism, a, mimimi [a complaint], as we hear a lot lately. But not. For me, it's a great opportunity for visibility and representation, and to work with someone else, you know, like researching with Valéria, and learning with her, learning with other ABRAÇA colleagues. And it really changed my life and I have no doubt that I want to go down that path. That was it then, folks. And as you saw in this episode, right, each trajectory of my life had a song in which I sang a little bit that represented that. It won't be different in the end, which for me is the song that most marks, well, what I lived. Her name is “This is me trying”, literally translated, “This is me trying”. I think that's it, right? In my life I'm always trying, we're always trying and it won't be too soon that I stop trying.

[Dienuza sings Taylor Swift’s song This is me trying in English]

They told me all of my cages were mental
So I got wasted like all my potential
And my words shoot to kill when I'm mad
I have a lot of regrets about that
I was so ahead of the curve, the curve became a sphere
Fell behind on my classmates, and I ended up here
Pouring out my heart to a stranger
But I didn't pour the whiskey

I just wanted you to know
That this is me trying
I just wanted you to know
That this is me trying
At least I'm trying

[intro music]


Olga Aureliano - The script and recording are by Valéria Aydos and Dienuza Costa, co-creators of this episode; the finalization and intro music is by Rodrigo Policarpo, and the transcription is mine, with an English translation by Deise Medina and Matthew Medeiros. She works in local production together with me, Vanessa Malta and consultant Bruna Teixeira, and as researchers, the anthropologists Nádia Meinerz and Pamela Block. Follow “Retratos Defiças” [Disability Portraits] on Spotify and Instagram to stay up to date on the co-creations that have been happening in Brazil.

Card cinza claro, quadrado, do podcast Retratos do Brasil com Deficiência. No centro de um triângulo em diferentes tons de lilás, a cabeça branca da medusa, de perfil esquerdo. O triângulo tem pontas arredondadas e está na horizontal, voltado para a direita. A medusa é uma figura feminina, da mitologia grega, com serpentes no lugar do cabelo. O rosto dela é branco e as serpentes são vazadas, com contorno branco, fino e parecem se mover em todas as direções. Na parte inferior, o nome do podcast. A frase Com deficiência está em negrito e Podcast, em negrito, maiúsculo.
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