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Olga Aureliano: In a super engaging episode, singer and composer Dêza, together with poet Odara Rufino, share their experience with hearing impairment: from the similarities and differences between congenital and acquired deafness, their current interdependent relationships, and many other topics that require a change of attitude and empathy from society. This is DEFIÇA OF THE OIÇA, our sixth episode.

 

 

[intro music]

 

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[track]

                             

Dêza: I have hearing loss, can you please speak louder? 

 

Odara: What? Hello? I can't hear you very well.

 

Dêza: I didn't understand what you said.

 

Dêza and Odara: Defiça das oiça!

 

Odara: Disability doesn't limit us.

 

Dêza: Singing is my job.

 

Odara: I write poetry.

 

Dêza e Odara: Welcome!

 

Dêza: Hi folks, this is Dêza. 

 

Odara: Hi, I'm Odara Rufino. Dêza and I are artists, friends with hearing loss, and we are here together to talk about our auditory disabilities. Talk to us, Dêza!

 

Dêza: for those who don't know, I am Dêza, singer, composer, self-manager. I was born in Arapiraca in the countryside here in Alagoas and I live in Maceió, in the Northeast of Brazil. I am a light-skinned black person, have curly black hair type 3b and I have unilateral hearing loss, that is, in one ear only, which is the result of a genetic mutation called otosclerosis, what a word huh?! It started when I was 21 and today, I use a hearing aid. So, I am oralized and I have a recorded CD, which is "Desanuviar" and two singles released which are "Maria Marisqueira" and "Mulher Reverenciada"; and they are on the digital platforms.

 

Odara: and I am Odara, poet, designer and mother. I am from Boa Vista - Roraima, in the extreme north of Brazil. I am mixed race, a mixture of black, white, and indigenous, a light-skinned black person, dark brown wavy hair, and slightly slitted black eyes. I have two books of poetry published, "Rede dos Sonhos" of poems, and one for children called "Desfruta", available as an e-book on the Hotmart platform. I am bilaterally deaf (in both ears), with a profound degree of hearing loss, and have worn hearing aids since I was two years old, which allowed me to be an oralized deaf person, a deaf person who hears. What is an oralized deaf person?  It is the individual who reads lips, speaks and masters the Portuguese language, and uses technology which are the devices for hearing.

 

Dêza: Very cool and we are in the podcast Defiça das Oiça.

 

Odara: Yes, this is a chat about how it is to deal with auditory disabilities, and our experiences with the difficulties in the profession and in social relationships, because we are oralized, and of the project we are the only duo that is addressing this issue.

 

Dêza: Yeah, also, we don't have a technical background, okay? We are going to talk more about our experience in dealing with hearing disabilities. And we also want to emphasize that if you have any hearing problems, we advise you to seek professional help. But you can interact with us on social media, tell us what you thought of this podcast and comment on your experience. My @ is @dezamusica and what is yours, Odara?

 

Odara: it’s @odararufino. Follow us, please.

 

[track by Dêza] 

 

Odara: We are not going to talk about how we became deaf. I became deaf because I was born premature. I was born at 7 months and, because of this, I went into an incubator. And there was some medical negligence, and the nurse forgot me in the incubator with a light so that I could produce melanin and it ended up that too much time passed and I started to produce a kind of bilirubin, I almost died of burns in this incubator. And to save me, my parents signed a contract that allowed me to have a blood transfusion. And this blood transfusion could have three consequences: I could die; I could have a sequel, a consequence or something; or everything could be fine and it would be all right. And then they did the blood transfusion and everything, and apparently everything went well. Until I turned two, and I didn't speak. My parents thought this was very strange, and they took me to a speech therapist. And they found out that I had profound hearing loss, a profound bilateral loss of two ears. And from then onward began the search for hearing aids, and this new journey for my parents with a deaf daughter, the acceptance of this, right? Even more so in an era that was not so technological and such, even so they accepted it and continued on, and with two and a half years, I started using hearing aids.

  

Dêza: It's a very interesting story, isn't it? I will tell you mine, which was like this. When I was about 21 years old, I began to notice that I didn't understand what people were saying. People spoke one word and I understood another. It started like this, very lightly, but then it started to deepen. When I was in noisy environments, like concerts, you know, theater, movies, I realized that when people spoke, I didn't understand either. And this started to be more recurrent, but until then, I hadn't looked for any professional help. I thought everything was normal, that I wasn’t understanding. And then the years went passing by and every year I noticed that I was losing my hearing. When I compared it to five years ago, I saw that I wasn’t understanding anything the person was saying. I began to hear more just the vowels, the consonants disappeared, totally, and then I started to switch around words and I began to see that this was wrong and that I had to look for a professional to see what was going on. Then I went to an ENT doctor and at first she said it was earwax. She went there to remove my earwax (laughs), and I returned home and the problem persisted. Then I became curious, and thought "Jeez, what is going on?” And then I started to isolate myself more, like at parties. At the parties I didn't want to talk to people anymore, because I didn't understand. And I didn't want to insist on asking too many questions, you know, all the time asking: "Hi, what are you talking about? I don't understand.” I started to get embarrassed. It started to cause a lot of conflict, with myself, you know? And then when I went to the ENT doctor again. I did several tests. And it was found that I have otosclerosis, which is a genetic disease that started to appear in only one ear, which is my right ear. And otosclerosis, is like this. One of the components of my hearing mechanism, which is supposed to be flexible, it hardened. In medical language it is called "calcified". And then, the sound that comes from the outside when it enters my ear; as this structure that was supposed to be flexible is hard, it doesn't put more sound inside anymore, so it has continued to diminish and now I have 60% of hearing loss today. And I use a hearing aid to be able to communicate with people, but I still can't sing with this device. That is another story that I will tell (laughs).

 

Odara: I wanted to add that my profound hearing loss, on the left side I only have 15% of hearing and on the right side, I only have 5% of hearing. So, what I hear is… the minimum. It's a plane going by... just low sounds. You talked about the percentage of your hearing and then I remembered to mention mine. And this is very crazy, because you can see that there are various levels and degrees of deafness. And yet, the difficulty is the same, right?

 

Dêza: Exactly. My degree I didn't say, right? It is moderate; there is: severe, moderate, deep, light, there are degrees right and… I don't know about you Odara, but I was very embarrassed to say that I had this loss, because I thought it was something that wasn't right… and it was very difficult for me.

 

Odara: Even more so when it's a late loss, right, when you're already an adult.

 

Dêza: Exactly, and then I had to learn to deal with it and learn to talk to people, mainly because I sing, so the people that accompany me (laughs) I thought, "people - people need to know that I have a loss, and that when they talk to me, they need to know for our communication to work… because, many times, it happened that when the person spoke a word one time.. like once my father said, "Dêza, take the little scale [“balancinha”], but I didn't understand the little scale, I understood watermelon [“melancia”], (laughs). So, I grabbed the watermelon, I grabbed the watermelon (laughs) and gave it to him (laughs), and when he saw it, he said “no, but I didn't say this”. I said “dad, I thought you had said watermelon”, so this is a funny thing I'm telling you, but this happened a lot when I didn't use the hearing device. It generated conflict even. So, it is very important that we have this notion; that communicating that we have hearing loss will facilitate our communication with people.

 

Odara: Yes, very different from you, who had to deal with this as someone who heard before and then became deaf, I was already born… not born deaf, it was a negligence that made me deaf soon after my birth. So, I don't have an auditory memory of the world, like you listeners do. So, I was fated to be deaf from the beginning…. and it was not so difficult for me, because my family was very well, ... they knew how to deal with the situation, you know? It is a family that is very… political, a family very .... has an intellect like… has information, and has conditions to…  carry this forward without even being a problem, right? So much so that it was right at the beginning; she is deaf, that’s it, there is no cure, it is an irreversible thing, and that's what we have to accept. Let's see what is best, let's go after the hearing aid, let's do an audiometry and let's see what it is and what should be done, right? To move on with life because life doesn't stop. My father is a musician, my father is a poet, and my mother is a journalist and also an artist. So, because they are from the artistic world, they made a choice that I would be a deaf person with a hearing aid, and also oralized. So, that I could enjoy the technology and science and also a little of this auditory world that there is. To be able to hear music, to be able to communicate with other people…. so that I could not just be a deaf person that signs… because deaf people who sign don't use hearing aids. They are kind of against hearing aids. And my parents were against this. No, let's put hearing aids to give her this opportunity to hear the world.

 

Dêza: It is very important for us to have the hearing aid as a support because it increases our quality of life. I have an aunt that doesn't hear very well and she is entering treatment now, because of her age, and my father also because of his age. He already uses hearing aids in both ears. So, we need to support ourselves, our parents, our siblings, the people who live with us, which is a family environment.  We need support to improve our communication. If we don't communicate, we don't feel included in the world, right Odara? and hearing is a big part of communication.

 

Odara: And those who don't have support at home, in the family environment, it is much more difficult to face the world… being born deaf or being disabled, because all the support we receive at home will make a huge difference in the way we will be in the world.

 

Dêza: And that's where our sociability comes in, when we leave home and go out into the world, the school environment, for example, when we start to circulate in the university we start to have more people talking with us, professors talking to us, we start to live in a world where we need more empathy, you know. We need people to be empathetic, because since we don’t hear, and when we speak, Odara, since we are oralized... When we don't hear, we get stressed. I used to get stressed because I didn't understand what the person was saying, and this was frequent. In a conversation I would ask several times: "Uh, I don't understand, I don't understand.” And I needed the person to have a certain empathy with me (laughs), and to understand me, and also to have some change in the way they were going to communicate with me. To have patience with me, to understand that I didn't hear very well, so they needed to repeat the word… It wasn't something that I demanded, but that in communication it needed to be like this… and within all of this, empathy for me is the most important thing, eh? in social relations like this.

 

Odara: Totally, focusing on the issue of school and university, as soon as I left to have contact with the world, it was a very big blow because the world is a world… it is apathetic, right?, that has… I think it has almost zero empathy right, very few people who have empathy in the world and it is an excluding world, it is an ignorant world, and so it was a very strong blow. When I realized what it was to be deaf outside the home… because at home I was always very well loved, very well treated, very well raised, but outside the home, I realized what it was to be deaf outside the home. Especially at school because at school I suffered a lot of bullying. I was excluded… But thanks to the efforts of my parents, the response I gave to get out of the exclusion that I suffered, was through my commitment and my performance at school, because I was always an excellent student and I always got high grades and I felt happier this way. I was not shaken by the prejudice that I suffered, because I knew my potential. I knew that my deafness did not diminish me, because I got high grades, I was a good student you know? and this made me calmer because it was when I understood that a hearing disability does not diminish you cognitive level, right? It doesn’t diminish anyone's intelligence. But even though I suffered bullying at school and everything, I thought that when I got to the university, I would find a better reality, because everyone was older, more experienced, university, college, imagine a maturity, you imagine that there are mature people there, but no, it was worse. Because I met a lot of people much older than me, and people much more ignorant than the kids in elementary school, for example. I would even like to tell a little story that is recent from the university, that happened to me, which is to expose the farce that is inclusion in school and the university. I was in college, I was studying visual arts, and I got to class… ah.. it was a lab for creativity, and the teacher arrived with a proposal to play a song from a little speaker, a really bad little speaker, for those who hear, and much more for those who are deaf. But she put on song from the little speaker and suggested that each student close their eyes, listen to the song, and visualize a picture with that song. I told her: "look professor, this is a very difficult activity for me and it doesn't fit with my reality, I'm deaf, there's no way I can do this activity. It won’t work"; and you know what she suggested? She asked for me to get out of my comfort zone, she said "look, I'm sorry, I'm not going to change my lesson and I think you better get out of this comfort zone and try to do the activity.”

 

Dêza: Yeah.

 

Odara: It really hurt me a lot, because I was born out of my comfort zone, right? Since the beginning, being deaf in the world I've been out of my comfort zone for a long time and she told me that, you know?

 

Dêza: Yeah.

 

Odara: It was a very big shock; because she herself could have left her own comfort zone to give me an good lesson, you know?

 

Dêza: And what is this comfort zone, right? (laughs), what is this right? Because we expect empathy, in all issues, right? With the issue of hearing impairments it is no different. So, when we ask, please repeat the word, or when we ask, please… we can’t do this activity due to biological reasons, we are asking for empathy, right? So, especially in a school environment, in a school, everyone who participates in that school: students, teachers, coordinators, cleaning staff, cafeteria staff… we need to be in an environment where everyone is humanized, where there is more equity, where we feel that everyone is participating in that environment. And like this….  I think that we can have a more beautiful world... I would say, yea, more beautiful because when we understand the other, we start to have a change in our relationships, and I think that everything we need nowadays is this change. That we live in a more loving world, where we can understand the other's side, where we can put ourselves in the other's shoes and create a reality where everyone is participating, right? and I don't know about you, Odara, but when we say “please”, we shouldn't even have to say please, but we say please, because we are already embarrassed to say that we can't hear very well, right? So, we are already breaking, we are already leaving our comfort zone when we have to say (laughs) please, because we are embarrassed. I mean, I was. Today I don’t have so much, but I used to have a lot of embarrassment, so I wouldn’t speak at all… that I had this hearing disability, and it got in my way a lot… So, we also have to change, right? From a place of shame to a place of speaking when we can speak. Which is our case… we are oralized. It is not every deaf person who is oralized, just remembering this.

 

Odara: Yes, it's about empathy, equity. I see it a lot as an event like this; well, there's a picture on the internet like this: Three people looking at the landscape, only one person is tall, he can see beyond the wall. One person is medium, and can't see beyond the wall, and another person is very small, and can't see beyond the wall at all. In equity the tall person doesn't need a support to climb up on to see beyond the wall; but the average person and the small person; they need it; the average person needs a little support to see beyond the wall and the small person needs two supports to see beyond the wall. What does equity propagate? Equity propagates… you analyze the reality of each individual, and try to help, to improve the life of this person, because equality disregards the differences of people, right? Everything is the same for everyone, but it is not, everyone isn’t the same. Everyone is the same in differences, everyone is different. So, we have to have look at each person specifically. Each person deserves a differentiated look, each person deserves an empathic look, so that they can follow their life and that is it. I see that, as you said, that change comes from ourselves, but we work together. It can't just be us changing and the rest staying the same, so we have to change everyone together. Of course, we have to say: "Look, I am deaf, and I think it would be better if you treated me this way; it would be better if you spoke more slowly, or repeat please, patience please”. We also have to teach so that we can achieve what we want, because many people are ignorant not because they want to be, but because they have never really put themselves in a situation like this, right? There are people who have never even lived with a deaf person and don't even know in the slightest how it is to relate to a deaf person. So, we also have to provide some relief a little bit, we have to teach, we as deaf, we have the mission to teach and promote change.

 

Dêza: and it’s exactly due to this that's why we can't be scared to talk, right Odara? We have to say it.

 

Odara: Exactly.

 

Dêza: and we have this loss… Mainly because, for us to live in a more loving world… speaking, listening and being listened to is a two-way path, hearing and being heard, who doesn't want to be heard, and who doesn't want to hear? I just wanted to tell you about an experience I had, about this issue of equity that happened now. My hearing aid, it broke the little tube, with the use of the [face] mask, I was taking the mask off and it ended up breaking the little tube, and then I received a call from Otomed, which is the place in Arapiraca - I actually want to send a hug to the people of Otomed who are listening here - which is where I could receive my free hearing aid, which is through the SUS (Unified Health System – Brazilian Universal Public Healthcare System). 

 

Odara: How great.

 

Dêza: Really incredible, isn't it? We don't have money to buy the devices, so the Universal Public Healthcare System does for us. And then she even talked to me; she said: "look, Dêza, we saw the video you made and everything", I said: My hearing aid, the little tube broke”, and she said “look, we know the difficulty and everything, and we will help you to have an aid which will allow you to sing, because I couldn't sing, I can't sing or listen to music with the hearing aid. I can't, because it keeps giving me sound interference, so for me it is a very, very, very big struggle. I can't describe to you how it is to go on stage and not be able to hear myself very well to sing. And I need to hear myself. So, I end up being the different one there (laughs) in the musical environment, right, everyone using their ear normally to play their instrument, to sing their music and I don't feel very included within my own work environment, right? and much less an environment where equity exists there, because it is a very big struggle until today.  I went to a concert last Saturday and I couldn't hear myself, I used my auditory memory, I mean, what I have in my memory I reproduced by singing, to be able to be in tune, right? The rhythm at least I could hear, but my tuning was very difficult, so, it is important for me as a singer, to be able to hear myself in order to sing. It is important for us to be heard in a conversation, in normal dialogue, right? With those whom we live with, it is already a large ask, to have to say that you haven't heard the word. Now imagine someone singing without hearing themselves (laughs) how do you do it?

 

Odara: A challenge.

 

Dêza: It is a very, very, very big challenge. I end up sweating, seriously. I end up getting sweaty from all the effort I make. I turn my neck to see if I can hear. But then I got this call from Otomed and this is going to be resolved. Soon enough I will have a new device where we will do the tests and God willing, I will be able to sing and hear.

 

Odara: That's great.

 

Dêza: Yes, and I will be able to hear myself better.

 

Odara: For me, on the contrary with the hearing aids, I listen to music very well, I love music, I cannot live without music. Given that my father is a musician, I was able to develop a form of hearing with the hearing aid that is even a little bit demanding. Even at the time of adjustment of the hearing aid, when I go to a speech therapist, I’m like, ‘no, now the sound is more muddled, the sound has to be better, cleaner’. Thanks to my experience with music that I have every day. You can see how music is fundamental, right?

 

Dêza: That's awesome.

 

Odara: I was even like, when I met you, I was very impressed. Holy molly, deaf and a singer?! That’s incredible!

 

Dêza: (laughs)

 

Odara: That is marvelous!

 

Dêza: Yes, it's a question of auditory memory a lot. And the people with whom I work, they need to know and help me. Make signs for me. If I get out of tune, they have to help me. They have to have 100% hearing with me there. It is very important to have someone by our side who can also help us listen in certain moments. I've gone through the experience for example, of singing in a music competition in New York, and I was in the hotel room sleeping alone, with my ear that hears better laying on the pillow and the ear that doesn't hear well away from the pillow. In the morning when I woke up, I heard the hubbub of the girls talking, "did you all hear? Did you all hear?” Then I was like “no, I didn't hear, what happened?”, then the girls spoke that the fire alarm had sounded. My jaw dropped to the floor. I mean, if there was someone there…[if] the building had caught fire, I probably wouldn't be here today on this podcast talking (laughs) with you. The importance of us having someone on our side, right Odara, who hears.

 

Odara: I have always been at risk because of hearing loss. Even now I have been thrown into a new reality because recently I became a mother and with motherhood, I realized that I am totally dependent on someone's ear, because at night, for example, I take the hearing aids out to sleep. I do not sleep with the devices, and one thing I love is to sleep in deep silence. But with motherhood, I had to change this because there is a little being that cries at night, wants to suckle, wants to be held, wants attention, and I realized this thing of having someone's ear to ask, right, it's a dependent motherhood, we are dependent on someone's ear. This is a little frustrating, but for those who have a support network, for those who have someone to count on, this is also very good.

 

Dêza: Once I was, I was crossing the street and…. I just didn't hear the horn (laughs). I don't know how or why I didn't hear the horn. In São Paulo city there is a lot of noise in the center, everything is very loud and a mix of sounds, you know, everything, and I didn't hear it, so, if I didn't have someone there by my side to warn me that a car was coming, once again maybe I wouldn't be here talking on this podcast (laughs).

 

Odara: It is very difficult, deaf people are always at risk. You have to have someone by your side, you always have to warn them, because even with a hearing aid, sometimes we do not hear. I myself have run the risk of being run over several times, and luckily it never happened, I am glad I am here (laughs).

 

Dêza: We are.

 

Odara: (continued) to speak in this podcast.

 

Dêza: Again, the question of empathy and the people who are by our side to understand us, right? That we have in some way, no matter how much we use hearing aids, we need this. This support in the family, at school, everywhere we walk, on the street, if we have a partner, if we do not. With whom we live and so… I began to realize that people who are not empathetic, they end up being a little more difficult for us to deal with, because when we find an empathetic person, okay, everything is all right, keep on keeping on, but when the person does not have empathy (laughs), then the challenge begins. Because either you have the patience, right? if it is an environment, for example: an institution where you go to the secretary, the person who serves you, or I don't know, the cashier at the supermarket; an environment where everyone circulates.

 

Odara: Public, right?

 

Dêza: Sorry, I didn't understand, what did you say Odara?

 

Odara: In the public environment, right?

 

Dêza: Yes, in the public environment, exactly. We end up dealing with all kinds of people, so it is not always that we will find empathy. So, for example, I once went to a supermarket, and the cashier of the supermarket, she, she said: “Do you have your social security number [on the receipt, a common practice in Brazil]?” Then I said: “What? I didn't understand”, and she said “Are you deaf?! Can't you hear what I'm saying?” and I was like, oh, no…now what? And I said “Yes, I am deaf, and I am not hearing you, can you please repeat?” It’s not nice to speak like this friends… “Are you deaf?!” because it ends up in some form hindering our communication. Some people may feel offended, but I try not to feel offended anymore, because I think that the world is already full of offenses, so I try not to fill my world with offenses, but it can happen that the person doesn't feel very well there.

 

Odara: This situation in the supermarket line up, in a public place is very recurrent. Even more so now during the pandemic, now that everyone is wearing masks because, I for example depend on lip reading, and now in the pandemic, it is a very difficult situation. Everyone is masked, and for me to be able to explain myself in a supermarket lane, and say, look, I am deaf, speak more slowly so that I can try to hear you, or just imagine! I think she [the casheer] asked for my social security number, I'll just say my number and imagine that is what she asked for, but it’s a very annoying situation right? We have to explain ourselves every day. Explain to everyone that we are deaf, that we have to change our behavior, even of ourselves, and of other people. It is very sad to see that most people are not empathetic. Most people do not want to change. Most people do not want to better serve people with disabilities, especially people in these public environments. It's something that I even wonder, how can a supermarket employ someone who is not trained to work in a preferential service checkout lane [for people with disabilities, pregnant women and elderly which is a law in Brazil] because normally the people that are there…. They seem unwilling to be there, you know?

 

Dêza: Yes.

 

Odara: They don't make any effort to serve people with disabilities well. I think the first criteria they should have is if the person is qualified to serve people with disabilities, right? In a preferential line.

 

Dêza: I was participating in a women's school that has training, and in this school one of the teachers… who at this point I want to send out a kiss to her, teacher Ariane, who I learned so much from about ableism. In the middle of the class... I think, professor, I will allow myself to speak about it here in public… which I think was a great learning experience be for you too. At one moment, in the middle of the class, she said “there is no one deaf here”, and I didn’t say anything at the time, I let the class continue on. Many days later we were conversing and for some reason we returned to this point… Ah yes, we were speaking about fatphobia, and then she said we have to talk, we have to talk, we have to converse, we have to have a dialogue to promote change, dialogue is fundamental. Then I said: "Teacher, I'm going to talk to you here, this word already existed here; are you deaf? Then she asked me for forgiveness for the mistake and everything, and our conversation was very beautiful and where this conversation ended up, she said: “ah, I didn't know that you have hearing loss and I think this is something that you have to talk about and that is when I learned this term "ableism", I said:
What is this ableism?” Then she began to explain, and it was really important - this conversation with the professor - we were talking about college earlier, right? school, and how important it is for us to have this other side shown, right? that something happened; a question like this “there is no one deaf here, ah are you deaf?” And instead of taking offense, there be the opposite, that we be able to speak, that we be able to understand each other and promote change. I think it is through this path that we need to walk, right?

 

Odara: I think that ableist expressions are very engrained, eh? Sometimes we end up engaging in them, even without meaning to. It’s an everyday occurrence. For instance, “being a John-without-arm” (“dar um joão-sem-braço”) [An expression used to refer to a lazy individual], you know, expressions like this, that are full of prejudice And every day we have this exercise, to get rid of these ignorant expressions that are rooted in us. And one thing that I think is important for us to sell this thing of ableism, is the example of the story of overcoming. I think this is horrible. Because if we stop to analyze it, everybody is overcoming something every day and the fact that we are disabled does not make us heroes or inferior, you know? It's not our fault. We came into the world or we got a disability, so it is a challenge for sure to face life with a disability, but it is not an example of overcoming, for example, to say: "Wow, you overcame it". This is not a compliment, you know? And this plays a large part in ableism, and it is very good for us to propagate anti-ableist behavior, because it will change people's behavior a lot.

 

Dêza: And this change is also our responsibility to promote, right? Not everybody will want to, and that's ok. We can't (laughter) promote change for others, but starting with us, right? Just by us being here, Odara, in this talk, talking about our experiences; It's already promoting change. So, I think we are doing our part, with all our sympathy (laughs), but at least it leads to a reflection, because I think we can't be embarrassed to speak about our experiences. Because it is exactly by talking that we will promote this change, right? And I remember that I was very embarrassed to say this, and when I was embarrassed to say that I had hearing loss, it hindered my life a lot. And from the moment I started to use hearing aids… and I only started to use hearing aids because I said that I had hearing loss and someone came and helped me, my sister took me to the Otomed clinic, and I was able to then hear better with a hearing aid, my quality of life increased a lot. And I started to overcome the prejudices that I went through when I had the loss of hearing, and if I encounter prejudice now I will know how to deal with it because I have already worked on this, and it is very important that we know how to handle it when we suffer from prejudice, because we will promote change and may even help other people promote change in their lives.

 

Odara: Yea, and about the question of shame, I think that we I think that we are only ashamed because society is not educated. If society were educated, we wouldn't be ashamed of being who we are, understand? And more than a change in ourselves; it is to provoke change in society. Because the difficulties we go through, we are not the ones who cause these difficulties, we just encounter them, right? We have to overcome them every day. I used to be very embarrassed. It is very recent that I ‘came out of the closet’ of deafness, very much due to Paula Pfeifer and her "the deaf who hear"  that is her project, and from there on seeing people who are deaf and oralized, coming out of the closet, identifying themselves as deaf. Then I had the courage to open up to the world and say, “no! I am deaf, if you do not want stay by my side, sorry, if you want to stay by my side, great, let's evolve, let's learn, let's touch this bubble, and learn to live with differences”, but also like… the principle blame for the shame of the person with a disability is society.

 

Dêza: Society is all of us, right? We all form society. We have a structure that is administrative, judicial and executive, right? Which are the three powers which organize what we call society. We have NGOs, which play a super, ultra part in this organization of society, inclusively that we are here today due to an NGO, and a university, which are also part of society, clearly. And within the context of society there are judiciary powers that guarantee us our rights, right? The laws of man here on planet Earth. Ah… which sometimes… like all human beings, we are contradictory, and it’s fine to be contradictory, but from the point of view of Law/Rights [the word for “Law” (as a discipline) in Portuguese translates as “Righ”t (Direito) in Portuguese there are “Right’s Schools” (Escolas de Direito) instead of “Law Schools”], we have to have our rights attended to. People with disabilities, us, we have our rights our laws. But within the law that talks precisely about hearing impairment because there are several other disabilities, we, I Dêza, am excluded from the law, and I will explain why. This year, when the vaccine doses started, the first dose, we had that thing about comorbidities, remember Odara? The priorities for the vaccine. And so here I went to research if I, as someone with a hearing disability, had priority in the line for the vaccine due to comorbidities.

 

Odara: Yes, and this priority line, you had to present your audiometry. To prove that you, for example in my case, the disability, I had to present my audiometry. I had to show my hearing aids to be able to prove my right to take the vaccine.

 

Dêza: Exactly. So, you had the right, and I didn't. Why? Because the Braazilian Health Ministry understands that people with hearing disabilities, they have bilateral hearing loss, just like you. They don't hear from the right ear or the left ear. I only hear from one ear. I have 60% loss in one ear, which is called unilateral. So, I am excluded because of this. What happens then? All the rights that apply to those with hearing impairment, I don't have. Which means, the law does not understand me as disabled. 

 

Odara: Even though you are.

 

 

Dêza: Even though I am. And I, as someone who has hearing loss, go through the same prejudices, the same problems, the same challenges, the same embarrassments, the same issues of talking to family, at school, on the streets, everywhere I go. You and I have already spoken about this, we are speaking about it here again, but we are different, right? Our hearing loss does not differentiate us.

 

Odara: Yes.

 

Dêza: As much as you have profound and I have the moderate, we have this. We have this issue with being excluded from the law.

 

Odara: We shouldn't create a hierarchy, right? Because even though we have different degrees of difference, the difficulty is the same. As you just mentioned the difficulties are the same, so there shouldn't be a hierarchy.

 

Dêza: And then we end up debating all of this and my reflection is like this: within society, within my relationships, I would like to be, to hear and be heard, for there to exist empathy within my conversations, and I would like to have rights. I’ve gone above and beyond. I started out embarrassed to say that I have hearing loss, I lost my shame, I'm here talking about this and I would like it to be the law; beyond the law (laughs) so that we have equity in all of this; all of this that we just talked about here.

 

Odara: And talking about laws; one thing that makes me a little sad, is that the law in the constitution is beautiful in theory, it's beautiful; but in practice we don't see movement, much less for people with disabilities. Many people who have a disability don’t have an awareness of the rights they have or that they should demand, and it is very important that everybody who has a disability go after a dossier of laws, and after the Statute of the Person with Disability. That they go after the legislation of the person with disability. To be able to realize the rights that they have to demand because they are not few. There are many rights, and we have to demand them in order to make them happen.

 

Dêza: So, let's go after our rights.

 

Odara: And fight.

 

Dêza: And fight and keep fighting because life here may be brief, but it's eternal, right: It will go, it will go, and everything we achieve today we are fighting for the people who will come in the future.

 

[music track by Dêza plays]

 

Odara: Let's make some recommendations here? Of books and movies about deafness. Which movies do you recommend Dêza?

 

Dêza: Look... lately I have watched a couple of films about this issue that really touched me. One was "Sound of Silence", "Sound of Metal" which is a movie from 2020 and tells the story...

 

Odara: Wonderful.

 

Dêza: Yes, wonderful! And it tells the story of a musician who in the middle of working, he loses his hearing, and he goes on dealing with this, and it's very beautiful the way it's approached. This question of the person who has lost his hearing, and how he deals with it. It's very interesting. I'm not going to give spoilers, don't worry. But it's a movie that’s well worth watching. Another one that I recommend is "The Bélier Family", which is a 2014 film that tells the story of a girl who is a singer, and her whole family is deaf. So, the whole film takes place within this story. Anyway, it is very beautiful. This movie made me cry, Odara. I swear to you I couldn't handle it. It's beautiful, beautiful, beautiful.

 

Odara: How nice.

 

Dêza: Watch it. And Beethoven's Secret, which is another Beethoven movie, right. He wrote the Ninth Symphony. He was already deaf, and it's one of his best-known symphonies, one of his most popular. And it is also a very interesting movie, right? I watched these because they had to do with music. I am a singer... so I went after this theme. But there are many other incredible movies, but I will list these three here for you, okay?

 

Odara: Yes, and you are a kind of a Beethoven.

 

Dêza: I am in this place of the singer that can’t hear when she sings, right? The memory is auditory. Now I want to know from you, what are your book recommendations for us?

 

Odara: Yes, I have two books that are important for me. Two are by Paula Pfeifer, "Chronicles of Deafness" and the other is "New Chronicles of Deafness". She speaks very well about the reality of the deaf. And this other "New Chronicles of Deafness”, is for those who are implanted, right? Those who use cochlear implants. And the other book is Brenda Costa's "Belle du Silence", which is an internationally recognized model who was born deaf, but she entered the fashion world being deaf, doesn’t use a hearing aid and until today is a renown. So those are my indications.

 

Dêza: Very good. We want to thank you for the audience. Follow us on social media. Here who is talking is Dêza, my Instagram is @dezamusica. Dêza with a Z and Odara's @odararufino. That was the podcast Defiça das Oiça. Now Odara will close with the poem she wrote herself, especially for this podcast. Now to you Odara!

 

Odara: Defiça das Oiça

 

I want to tell the world

That I was born from a deep silence

But today I stay in silent mode

Only when I want to.

Today I don't tolerate

Who remains in prejudice

Who doesn't humanize.

Nobody will shut me up

My voice is of someone deaf

But it's a voice that is active.

Remove your prejudice from my path

I want to pass with my deafness

And walking ahead, I glimpse

A place where ableism has no place,

Nor ignorance, either.

As Leminski once said

"That of being exactly what one is

will still take us further."

Being deaf does not cause a problem for anyone

Nor would it cause a problem for me

If everyone tried to know about the subject

And knew that accessibility is a joint effort.

The lack of humanity is the real disability.

Even if they try to mute me

There is nothing that will change my experience.

Today I open myself up and shout with all my strength,

loud and clear that I am defiça das oiça.

 

[track by Dêza]

 

 

[intro music]

 

Olga Aureliano: This channel is produced by the NGO Ateliê Ambrosina from Maceió-Alagoas, and financed by Western University in Canada, with myself Olga Aureliano in mediation and local production, alongside Vanessa Malta and Bruna Teixeira, my team partners. Anthropologists Nádia Meinerz and Pamela Block are researchers on the project, and the script, recording, and editing is by Dêza and Odara Rufino, co-creators of this episode; the finalization and vignette is by Rodrigo Policarpo, and the transcription is mine, with proofreading by Bruna Teixeira and English translation by Deise Medina and Matthew Medeiros.