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Self-portrait of women with disabilities: the look from the inside, the look from the outside



Title: Self-portrait of women with disabilities: the look from the inside, the look from the outside

Release date: 2/28/2022

Co-creation: Gislana Vale e Olivia von der Weid

City/State: Fortaleza/CE e Rio de Janeiro/RJ



[intro music]


Olga Aureliano: “Self-portrait of women with disabilities: A look from within, and a look from the outside”. It is the last episode of this season of Retratos Defiças [Disability Portraits]. Olivia Von der Weid and Gislana Monte talk about the poetic and political dimensions of accessibility, especially in the cultural field, taking as a starting point the experiences that each one has been treading through the studies of blindness and low vision.


[intro music]


Gislana and Olivia: Self-portrait of women with disabilities: A look from within, and the look from the outside.


Olivia: Gislana is a black woman, her skin is not dark, as she normally says, from the Northeast with a delicious accent from Ceará. She is part of a vibrant circle of women who lead a very powerful and charming collective, the Brazilian Movement of Blind and Low Vision Women. She is doing her PhD in Psychology at the Federal University of Fluminense and is a collaborating researcher with Conatos. She usually talks to people from her home office, an image that has already been etched in my memory, where part of a closet appears in the back, a window in the background, a fluttering curtain and the sun of Fortaleza shining outside. I would say that Gislana is a woman of fiber, of linen fiber, firm, resistant and at the same time light and flexible. With this fiber of which she is made, she weaves beautiful and varied existential landscapes of her being a woman.


Gislana: Olivia is a cis, white woman, with brown eyes and hair, who talks about her home in Rio de Janeiro. A professor and researcher from the Federal University of Fluminense. She researches about women with visual impairments, weaves embroidery with our lives; it entangles us and entangles itself. She makes poetics of blindness, of knowing how to live and knowing how to be. She talks with us, thinks with us, about the magic of feminine time, of always and now. I once heard a talk, that the person said, when you photograph a person it is as if you put their soul in that photo, they are not only portrayed, they are somehow placed in the feeling. It's like an instantaneous snapshot of that moment. It's joy, for example, she'll be smiling with a light expression. If it is sadness or apprehension, then the photo also registers this feeling. It is not just the place where the image is registered. And then there's something that I was also thinking about for blind and visually impaired people, in general, also for people with low vision. We worry a lot about asking the person if the photo is good. What is a photo that looks good for a person and for me? For example, it could be a good image, but it could also be that the person is asking: “what is being portrayed in that photo?”. Because, sometimes, the photo, it is not, it is not a photo, structurally perfect, but it is a good photo, from that moment, right?


Olívia: I think there are many interesting things there for our exchange, right? Of reference, right? Like thinking about what is a good photo for example? If in terms of framing, it means what you are able to see in that photo. And if this question includes this, a good photo is a photo in which we can see that it is framed, that the person is within that register, right? You don't have your hand out of the picture, for example, right? Or a good photo can also be thought of in terms of aesthetics as well, right? Is the person ‘good’ in the photo? Signifying that she is beautiful, or are she is smiling, right? What also is beauty? This is all a concept that we can problematize right? What is being beautiful also, right? Thinking about the transposition of this too, one of the things I saw in my doctoral research which always instigated me a lot, and I think this is also what motivated me to create the title of my thesis, is that the image is not only visual, right? This word “image”, we associate a lot with the visual, right? But an image can be a series of things, multiple forms of registering the experiences that we have, right? It can be an olfactory image, an auditory image, right? This is what we are provoking here as well. A record of a portrait which is not visual. A portrait which is auditory. And what would that good photo be like, well, that good record, that good image, right? If we bring to this field, you know, the multiple possibilities that the image can have.


[sound effect of a photo being taken]


Nayara: I'm Nayara, I'm 29 years old, I'm a black woman with black skin. I have black eyes, black hair, thick lips, thin eyebrows. I have a nose that is a little bit fat [full; cheinho]. My face, it's thin, I wear cherry colored lipstick, I'm dressed in dark denim shorts. I'm wearing a white bodysuit with straps, I'm wearing sunglasses, I'm wearing big silver earrings, my hair is loose and curly at the height of my ears. I have small ears and I'm getting ready to go to my sister's house because it's a beautiful sunny day here. [sound effect of digital photo being taken] I'm a black woman, I'm young, I'm 29 years old, my name is Nayara. I have low vision, I undergo treatment at AFAC – it’s my rehabilitation, since I searching for my autonomy, and on Tuesday there was a wonderful encounter, with wonderful people, where I felt very happy to meet Gislana. I was with Luzia, Vanda, and it was a wonderful encounter with my friends. It is very important for my treatment, my rehabilitation, where I have been seeking my autonomy. After we left AFAC, we went to a wonderful restaurant.


[sound effects of a picture being taken and then of ocean waves, wind and beach ambiance, over the next paragraph]


Nayara: Hi girls, yeah... I'm Nayara, I just took a shower, because here in Rio de Janeiro, here in Niterói, it's very hot! I'm all dressed up... [salesman in the background: Buy a popsicle!] wanting to go to the beach. I'm at home, but I feel like going out on the beach, enjoy that ocean blue, that sea breeze hitting my face, that blue sky, that radiant sun. I'm in a bikini, I'm wearing red lipstick, with silver ear hoops, my hair is tied up, and I'm in my room, wearing white headphones. I'm wearing a bikini. The color of my bikini, the top is black and my bikini bottom is all leopard print. I'm all set to enjoy the beach!


Olívia: So, we're... you're looking at this album of portraits by Nayara, right? There are 3 portraits, it is a sequence of 3 portraits, which lead us to who this woman is, right? Yeah... in this first one, we meet Nayara physically, right? I perceive a bit, from this self-description of herself, the details of her face. For me it's as if she had made a portrait of her face, mainly. I don't know if you have that impression, Gislana.


Gislana: Yeah. She defines her characteristics a lot, right? And so, in the way she describes it, you see this diversity of possibilities. Because when she describes her hair, she talks of the hair of a woman, of curly hair, which is a very strong thing in black women, the black skin. And then she goes on to describe other aspects. The thin face, the thin eyebrow, the wide nose and thick lips. She goes on constructing references…. that are ethnic I think, racial, which is very much a thing of Brazil, of the Brazilian person who has many nuances, racial, belonging to... in this thing of many mixes of race, ethnicity, I think it's a little, we see this when she speaks about her description.


Olivia: And she goes on being very detail-oriented, right? I keep imagining, in a parallel, with photography... an approximate image of the face, right? Because she enters into the details of the face, goes into the detail of the relief, the lips... it has texture for me, this portrait, right? Texture of the nose as well, the shape of the nose, the shape of the lips. I think this is very beautiful, the way she goes in creating a spoken portrait, bringing in texture, right, of the face.


Gislana: Exactly. I think she really zooms in on the face, on the features. And she speaks slowly, as if she were at the same time, running her hands over these places.


Olivia: Exactly.


Gislana: That she is informing us about. We have this sensation.


Olivia: And I, while I was talking to you, about this impression of the close-in zoom, and the texture, I made the gesture here with my hand, to put my fingers on my face, on my lips. And you just described exactly that, right? As if you were going through it with your hands.


Gislana: Yeah.


Olívia: I made the gesture in that sense, with the nose, you know? Getting close to it. And the vision, this vision of touch, which is this close-in look, right?


Gislana: I think so too.


Olivia: [Inaudible] this portrait of her will be very beautiful. And then in her second portrait, she  brings me a more existential landscape of the moment she is in today, right? It's... When she speaks of “I'm a woman with low vision, I'm doing rehabilitation, I'm looking for my autonomy” right? We already enter a bit more into this place of subjectivity. This existential landscape of hers, I don’t know, right?



Gislana: It’s a process of constructing life, I think it’s that. Because sometimes when you think of a portrait, you think of a portrait that says something about that moment. But when she portrays herself in this place, it’s as if the portrait of her moves to another place. As if she were taking various photos of moments and placing them there sequentially. I had this impression.


Olivia: Yes, and it makes up, right, a scenario, a little broader for us in terms of “who is this woman?”, right? And “what moment of life is she in?”, as you say, right? Building her life. Now also in this moment of recognizing herself from a new place, right? As a visually impaired woman, in search of her autonomy and, at the same time, in this place of conviviality, right? That opens up a whole... a whole new scenario of relationships that she finds at this moment in her life, right? I think these women who are with her in this scenario, she quotes, right, some of the women, who are part of this movement - the Brazilian Movement of Blind and Low Vision Women - are part of this time of the construction of her life, right?


Gislana: I think this is important, yes, because it's... a portrait, sometimes, it, it portrays a very lonely dimension of us. Me in that place, in that territory, at that time. And she goes on... creating a portrait, where she accompanies other women to live in other places, to live in other spaces, you know? I think this also greatly enriches this photograph she takes of the time she is living.


Olivia: And another thing I think is beautiful, is that she relates this to autonomy, right? And then, we see there, a notion of autonomy within this lived experience, right, her lived experience? A notion of autonomy that is not solitary, that is not alone. It does not necessarily mean doing everything alone. It is an autonomy that is built together. I don't know if this... if this is… for me it is relevant when she says “autonomy” and talks about her friends who are with her together, in this construction of autonomy. So autonomy is built together, not built alone. 


Gislana: Yeah. The place of the collective in her life, right? To feel belonging, because when you take a photograph, you take it in a place, in a time. And then it's... sometimes it's in your home, sometimes it's at work, or on your leisure time, who knows! But it is a place where you feel you belong, you are part - at least, momentarily - part of that place. And when she relates this autonomy, with the participation of her friends, of the women who are with her, I think she provides this understanding. That autonomy is also made in the collective.


Olivia: I think that's very powerful, right? Autonomy has to do with participation, it has to do with, you know, being a part of, belonging.


Gislana: That's it.


Olivia: This is a very powerful idea of autonomy, isn't it?


Gislana: Yeah.


Olívia: And in the third scenario, we also get to know Nayara who, who circulates, right, circulates in territories, who circulates on the beach. I feel like in this third audio, almost the heat that she is bringing, right?


Gislana: Yeah.


Olivia: There's something about the heat, I don't know, the temperature that really calls my attention, in this third portrait.


Gislana: And what about you, you're from a very, very... diverse place. When she talks, because like, when she talks, when she narrates the clothes she is wearing, which is the bikini, and talks about the leopard print clothing, the, the, I don’t know, her bikini, she assumed another voice, like, very sensual, right? So, she translates this moment of sensuality that I think is a little bit this dimension of her youth that she brings with it. A woman who goes to the beach in a bikini, who thinks she is beautiful, who wants to show her... the beauty of her body, her skin, her youth, I understood this moment a little from this place.


Olívia: And that freedom too, you know? She talks about the wind, she talks about the beach, the sun, the heat, right? And she is at the same time in her room, but she can inhabit this beach scene, right? Which is what we also worked on and has already exchanged a little, right? In other moments, about these... this imaginative horizon, right? Not necessarily, that we need to take a picture, standing. The spoken portrait gains a liberty in relation to the place where you are.

Physically.  Because she is physically in her room, but imagination takes her to the beach.


Gislana: Yeah.


Olivia: And she goes to the beach with everything. With her clothes, with her body, with heat, scenery, you know, everything.


Gislana: That's it. I think there's this relationship, a freedom to be able to translate the landscape… from the understanding that I want to be in this place, I am going to this place, right? And I think this is a place of fantasy even, that portrays a thing, a place, a person, allows for it. I think she uses this mode in a very possible and broad way, when she portrays herself here in this moment.


Olívia: And at the same time, I keep thinking, the place of fantasy is built from a bodily memory of lived experiences and experiences, right? We only fantasize what we have elements to fantasize from in some way, right? So, this beach inhabits her body and she recalls, takes up this place of memory to build this scenario again in the now, right, for us. From this spoken portrait that she describes, she narrates beach experiences, which inhabit her body, right? that she is reconstructing for us in this spoken portrait. I end up imagining a bit this scenario of the montage, you know? Of the collage, of the composition of a scene from this, this memory that the body brings, you know?


Gislana: This provides a bit of a technological dimension, because in futuristic films, we always see the holography thing. Of how a body, even if not physically, can move from one place to another. I think she provides this holographic portrait of being in the room, being in the place, and at the same time being at the beach, where she intends to go (laughs). I think it’s a bit of this.


[sound effect of a digital picture being taken]

[song Chão de Estrelas sang by Nelson Gonçalves as background track through the first portion of next paragraph]


Sônia: Good evening, my name is Sônia Marche. I'm arriving from a serenade, after almost 2 years of a pandemic. A wonderful song is playing, 'Chão de Estrelas'. I am a black woman, with not so dark skin, with fine features, my hair is brown and short. I'm wearing black clothing, a pair of black mesh pants, half pantaloons - because my legs are short, I can't wear full pantaloons. And a black blouse and on top to compose, a little coat with wide sleeves printed with various colors. I'm wearing a necklace with the black agate stone and gold earrings, and also gold rings to match the outfit. My shoes are black with, with a little gold embellishment. My expression at this moment is one of great joy, because I'm doing something I like, and I'm in the midst of wonderful people. [digital picture sound effect] Good afternoon, today I'm going to create a photo... a photo that is not very common for me. Even the smile becomes distant when this Christmas season arrives. I love Christmas. It's a joyful party, full of love, and I'm sad for just one reason; my mother managed to gather all her children, daughters-in-law, sons-in-law, grandchildren, around her. And I, wasn’t able to manage this feat. I become sad. At the time, no. At the time I become happy/rejoice with those who are present, those who participate, because Christmas is love. But the feeling becomes visible on our faces. I’m not able to relax, I’m not able become totally happy, about this. I wish it were different. I know all my children love me, I love all of them, my grandchildren, but I can't gather them all, for various reasons. The three, the three that already... more than three, right? Because it's six, nine, eleven, thirteen out of three, it's thirteen. And we become like… with a feeling of emptiness. My feeling today in my eyes is a feeling of emptiness. I wish it were different, that I could be happier, writing and talking about myself in this text, but that's how I feel. [digital picture sound effect and background track] Good afternoon. In this self-portrait, what will really be marked is my contentment, because I will make a self-portrait of my satisfaction in having managed to prepare the house for Christmas this year. I managed to make the arrangements, the arrangements I wanted and our house was able to become very beautiful. Of course, I had help from my son-in-law, who is super patient and, and he has the ability to do the things I ask for. I want this, and he does it. So, I was able to have a living room divided into an arch, I was able to put in a gold lamé curtain with, uh... with red bows, and red and gold ribbons and balls, which turned out really, really pretty. I divided the space. With this division of the space, I made a nativity scene - because there has to be a nativity scene for Christmas - and my grandchildren really like the nativity scene. I made a corner for Santa to rest, with a basket of Santa Claus resting, there's a lot of Santa Claus in that corner; and these were the arrangements I managed to make, and this gives me a lot of satisfaction and joy. For this, I am happy.


Olivia: Guys, what is Sônia, right? (laughs).


Gislana: (laughs) She creates a narrative that is very perceptive… to her feelings, right? You can almost catch it, right?


Olivia: Very sensitive, huh? When she brings up, in the first audio, when we spoke about Nayara, the impression that I had of Nayara was of a portrait of her face. Not with Sônia. She creates a portrait where you can see the whole body, because she enters!


Gislana: Everything.


Olivia: (laughs) Yeah... she gets into this detail.


Gislana: Those half pantaloons (laughs), I was thinking: “what is this?”.


Olivia: Those pantaloons, exactly (laughs).


Gislana: Short legs and a pair of half-pantaloons (strong laughter).


Olivia: She gives a dimension of height, very precise, you know? When she brings up this example of the pants, half-pantaloons. And the relationship that I think she has with her body, in this place of a woman. First the voice, right? Sônia's voice is that of a woman, right? Older… she has..


Gislana: She's elegant, her voice, you know? Very pretty, I think.


Olivia: Exactly. It’s elegance that really called my attention. Elegance in her voice, elegance in her clothes, in what she wears, in the description she gives of the necklace she's wearing, right? The necklace, the earring, right, and the pants themselves, right? The pantaloons.


Gislana: Yeah.


Olivia: And she goes into detail about her shoes even. That’s why I was like, wow! It's a photo... it's a full-length portrait.


Gislana: Of the whole body. Perfect. It’s exactly that.


Olivia: Very interesting, isn't it? And Sônia's voice reveals a lot to me. The figure she is, in this place of age, wisdom, her particular way, you know? The calmness also conveys a calmness to me.


Gislana: Yeah. And this second photo, with this lamé curtain, with red ribbons. I was imagining this (laughs). A basket of Santa Claus resting, what is this?!


Olivia: Yeah, the second photo, already brings us into the space of her home.


Gislana: The environment, a lot of detail of the environment. It makes you feel like going out looking for each one of the things.


Olívia: Every detail of the environment, exactly. The room that was divided with this curtain in another environment so that the nativity scene could be there in another corner, right?


Gislana: And Santa Claus in another.


Olivia: Exactly... Santa's basket. It's as if we entered this house, right? Inside this living room, and saw these details of the arrangement of this space, right? The contentment/satisfaction, she portrays her satisfaction/contentment. It is also beautiful how she brings the emotional state that she is in, right.


Gislana: Yeah


Olivia: And she brings this figure of this son-in-law, who for me also appears in this portrait, right?


Gislana: This family relationship, you know, of support, of… right?


Olivia: Yeah, mutual support.


Gislana: Help, welcome. I think that's it.


Olivia: Then she talks about this relationship of help, right? Which I think is very present in everyday life, it's... of people with disabilities, in general, but of all people, right? This relationship of interdependence, of help, of support and how this is built in a network of affections, right? She says, she says of him, how much care he takes, right? He knows what she wants. I found that very beautiful.


Gislana: I thought so too. I think it portrays this thing a lot, of a helping relationship as a partnership. It's not something like… doing a favor, but it's a partnership relationship. One thinks, one does, the other thinks, and the first does, I don't know. I think it's a relationship of exchange, even of good will, of doing so collectively, which I think is very good.



Olivia: Yeah, exactly. And then we get to this other portrait of her, which brings a very strong emotional landscape, it's a family portrait, right? A family portrait, well, very accurate. I thought it very beautiful the way she brings, in this family portrait, all the complexity that is this place of family, right? Of our expectations in relation to what happens, at that moment of Christmas, of being together. Then she brings the memory of her family, her mother, this question of lineage, you know, this is present, this family genealogy. And at the same time a frustration in relation to desire, you know, of her what she would like and what happens, right? That this frustration is not due to lack of love, but is simply due, right, because life is complex and families and relationships are complex, right? And we aren’t always able to meet our, our expectations, right, for those moments.


Gislana: So, when she talks about this, I have the impression of a person at the window, looking at life, you know?


Olivia: Look at that, how beautiful.


Gislana: Seeing this image of my mother who used to do that. I remember a lot, that this was also a very present thing in my house. And she does this as if she were looking through the window of time. I think this is similar, I really like this image.


Olivia: This image of the window of time is very much in this void, right? She portrays this emptiness, this window of time and this emptiness, you know, that she brings. In my eyes, it's empty, because maybe she's not looking at that window, right, of time. This clip [image] is very beautiful, this family portrait. Then [dependent] how the portrait is spoken of, these nuances can appear, which possibly if they were present in another photographic image, I don’t know, but how would they be different? Right? I think it's more interesting to emphasize the differences, right, not so much the comparison to try to see what one does better and the other doesn't, but the differences, the singularities of a spoken portrait, right? This photo is very beautiful.


Gislana: The spoken portrait allows you to sew-in different elements. Feelings, the... the physical element, the element of the perception of things, of the elements that are building that portrait. I think the elements, they take on a very… active listening form, when you listen, you… they parade in front of you. While in... in a photo taken, even when it is part of an album, right, the album brings things separately. It brings that photo, another photo. And in... in this photo, it's... in this portrait made by the sound of words, I think you go along sewing together the different elements in the same place. It's as if you were gluing together parts of those elements that construct that photo. I think that's it.


Olivia: I liked this image of sewing, Gislana, that you proposed. That's it, right, little by little. Because there is a temporality of speech, right? Vision is instantaneous, you looked and saw. Speech gradually builds, she sews, she composes a scenario, little by little, you know, bringing another element that is, I don't know, the curtain, which she describes there, brings in another element, which is the nativity scene, then suddenly it starts to appear, you know, this image that we go along forming in our own heads as she speaks. These elements begin to appear and are sewn into this image. Very pretty.


Gislana: Yeah. Santa Claus resting... I was thinking, you know, what? Santa Claus leaving and entering the basket to rest (laughs).


Olivia: She says Santa Claus, then she says several Santas, so I wondered... (laughs).


Gislana: Yeah! (laughs). I thought some leaving, others entering... (laughs).


Olivia: A Santa Claus Convention! (laughs)


Gislana: (laughs) of Santa Claus (laughs). I kept thinking about it too. A basket full of them, one leaves to go to work, the other returns to rest.


Olivia: Taking turns, you know, taking turns. Very nice. It's a composition and an orchestra, right, at the same time (laughs)


Gislana: That's it. Each one takes on their role in this landscape.


Olivia: Yeah. How this is a lively portrait.


Gislana: [They] come and are placed, come and place yourself in your role, in your place, in your… auditory spatiality. I think that's it.


Olívia: And that's the difference, right? Of a spoken portrait, that focuses on spatiality, which is this one of her house prepared for Christmas. And the other, which focuses a lot on this portrait of a landscape which is internal. On emotions, feelings, on subjectivity… but which brings with it this place of family, of belonging as well. So, these are portraits with landscapes [images] that are very different. This variation is also very interesting. So, these are the two great women that we invited to portray themselves, right, on this show, Sônia and Nayara.


Gislana: Yeah. And they bring a lot this relationship between being young, being old, not as a distortion of time, but as a complementation, time is like that. Time continues on, it brings other experiences, other speeches, other understandings. In the end, you will see in Nayara and Sônia's speech, two temporalities of life placed in a very possible way. Because, when you think about portraits of disability, you think you're going to portray a condition of sadness, suffering, pain. And in fact, in the two women portrayed, what jumps out of this photo is their lives. Their lives, the way they face their lives, their moments and disability crossing all this as a condition of existence. But not the condition propelling or impeding life. I think this is an important thing for us to think about when talking about portraits of disability.


Olivia: I think this is really important. Marvelous commentary. Because that's it! It is part of what, what is the daily life of these women, but it does not define their existence, it does not define their experience, right? It doesn’t determine... in terms of identity, necessarily, right? Although it also permeates that, but that's it, it's a condition with which you live, with which you live, right, I think too.


Gislana: And it’s part of human diversity. I think this for me has been an important motto for us to understand. Disability as part of human diversity. These people, these women have disability in their lives, but they also have other things: family, youth, aging… feelings, loss, excess. Everything that other people also have in their lives, I think, in other ways, in the same ways, I don't know. I think it’s more or less this.


Olivia: Yeah. The condition... is a part of the spectrum of what it means to be human, right? That's it. It's a diversity, it's a singularity that enters together with all the experiences that any human being will live, right? In relationships with family, with friends, friendships, which are also built from this experience of disability. New landscapes open up, right? It's not just closure. I think this is also very important, right? There are relationships that are built on conviviality, interdependence, friendship. Openings that arise from this, this element of life, right?


Gislana: Yeah... I have a question, in relation to a, a portrait, an image, right? Ah... I always discarded several… I never want anyone to send me several images. Because like, I think it confuses me a little. If they send me one, and we, they tell me what’s in that image, then we choose one, for me one is enough. I’m not an accumulator of photos (laughs). I don't have a crowded gallery. And then I discovered something too. I post on Facebook and I post written portraits. I write things that portray soundscapes. I post very few photos. At first, I was annoyed, because I saw people posting a lot of pictures. And then, I kept thinking that I had something wrong with me, because I didn't have a photo add. Then later, I understood that when I write and post there, in some way, what I'm posting is a written portrait of what I'm thinking. It is not an image photographed specifically with a body, but it is an image photographed from an idea. This is what I think. When I read my posts, I think that people respond a lot to the posts I make. They send messages there, and say what they think. And I think somehow they see what I'm thinking.


Olívia: This is interesting Gislana, because it also brings up a lot ah... how much we record through these supports, right? These supports which can be through photography, but how much do we retain from what we recorded? From what we photographed? When you bring up this issue of excess, right? Because I think we live in a world that is very guided by this… this logic, this visual regime, you know? Everything is image, everything is a photo, a selfie, right? Everything...


Gislana: Uhm.


Olivia: We see an excess of images circulating right? You gave this example of how on Facebook, people upload a ton of images. But what is left, right, when we record? What makes us record a scene, right? And then you are bringing up, precisely, that for you, you bring up these words, you know, from what you registered, that this is a way of you bringing up your experiences right? Bringing to your consciousness a little more of that experience, right, of that scene. And then, this support that we are going to use to register, it can be multiple, right? I think that a bit of the motivation for this podcast is to also expand these forms of registering/recording right? From these singular corporealities of women with visual impairments, blind women, with low vision. They invite us to think a little bit about this, right? The register/record doesn't have to be just photographic we have many ways to record/register an experience and in a way that it becomes marked/poignant right? How do we let ourselves be affected, then, by that moment and collect. I keep thinking about this, this idea of ​​making a collection, you know, an album of portraits. How can we collect, right, our experiences?



Gislana: I went to a museum course, and there was a painting that I even saw when I was able to see, at MASP - Museu de Arte de São Paulo [São Paulo Museum of Art]. There was a painting that portrayed a black woman, with a white child on her lap, a lighter-skinned woman next to her and a white man behind them both, right? I had seen this photo and I saw this one, it's a painting by a painter, I don't remember their name. And then I took this course and the professor, who was a black man, came to talk about this issue of blackness, ancestry... he read this painting and I never forgot this painting, it's in my head. The black woman was a woman who came from Africa, that's why she was dressed - and then he went describing her clothes - she is wearing a turban, barefoot with the child on her lap. The child is the grandson, ah, son of these two who are with her. The lighter-skinned daughter, who is already a lighter Afro-descendant daughter, but mixed, so to speak, wearing shoes, without a turban on her head, with other characteristics. The man is a white man, right, the man who is behind, who we believe is the child's father, who is holding the two of them like this, and the child is light-skinned, with curly hair and naked, right? So, he built a trajectory of this image, you know? I began to think, how can an image say so many things to us? The first time I saw this in a museum, I had no idea. Although the painting has a name there that can give this indication, I began to perceive other nuances of this issue of race, exposed in that painting. Then I also began thinking, that the reading of the world also of the images, as a narrative description of that image, it also proposes things to us, right?


Olivia: This is something that is very strong in the experience of those who are going to narrate, describe... my experience at least, you know, I don't know if in everyone's experience. But whenever I'm going to do this exercise of describing an image to a friend, to a person who doesn't see, you know? To a person who doesn't see with their eyes, this invites me to step into that image in a way that I wouldn't necessarily have done if I was just visually relating to it. This very place in the narrative that you bring, you know? By narrating an image, I can go deeper and discover things, sometimes even seeing things in the image, that I wasn't seeing before, that I wasn't noticing before. Due precisely to this aspect of pausing and speaking, you know, and finding ways to say that, even if not in a descriptive way, as impartial and objective as possible, right? We are also looking to refine this way of narrating and speaking about some situations, they ask for a more objective description, others ask for a more poetic description. There are many ways to narrate, right? But either way, this experience of describing and narrating images is very rich in the sense of expanding our ways of seeing, you know? I think there is this point of exchange, of reciprocity that happens in the relationship between vision and blindness. This can’t be thought of as a one-way street, right? Which sometimes we think in this way, that this technique is for people who can’t see, or for those who are blind. People who can see doing something for others, but it’s not. In reality it’s…


Gislana: It isn’t.


Olívia: It's an invitation for us to enter and dive more and more into our experience of seeing, right? That's what blindness also offers us in this relationship, right? This is beautiful, because it’s a field in which we also need to deepen our ways of looking and we realize how much vision isn’t a given. It's not the same for everyone, right? Also. So, I think this is something that is revealed in this encounter, you know, between vision and blindness.


Gislana: I think, I think, that this issue of the portraits that each person makes or narrates - even among the people who narrate this, from their, their understanding and their visuality - they... give the dimension to aspects that sometimes... a person speaks to me, in the group of blind women, she recalls a story about her life. Then she talks about aspects of it, and when she talks, she's describing what she sees, and when I hear this, what I understand is from the perspective/position of my culture, from the place that I occupy, because what you see it is not something that is just resolved through the image. So, a portrait of a situation, of something, of a moment, of a place, it brings with it this more ample dimension of seeing through other senses and aspects. Someone tells me a story, and I see it through my own perspective, because they are telling it through their perspective, because she sees it through that perspective from the position she occupies. But what she sees or portrays, brings with it this aspect of the location we occupy right?  


Olívia: Exactly. And just how much can we open up this dimension, that is so rich, of memory, experiences, registrations, as an aesthetic form of experimentation with these other sensorial ways of describing/saying an experience or recalling, or creating a record/register right? Which is what we are proposing here, but I think it associates - I want to open another key point here for our conversation - which is the association of this aesthetic dimension, with ethical and political commitments in discussions, in speaking to people with disabilities, right? 
Because, what we are doing here, has an important aesthetic dimension, which we promote, right, our ways of recording. A portrait, can be a spoken portrait, it doesn't need to be a photograph, it doesn't need to be a visual image, right? And that does matter for people with disabilities and for people in general because it also has a political effect, right? It also has an ethical effect, right? Which is how to consider these multiple corporealities, as corporealities that produce processes that are poetic, you know? poetics in areas of aesthetics, of language as well. I think there is this important point, when you bring this point of registering an experience through speech, through writing. It also brings with it this dimension of the ways of speaking. It has an effect, right? In this political area, which I also think it’s worth us commenting on.


Gislana: I think that this issue of spoken photography, also reveals the territories you inhabit, because the impression I have is that people who see, right, who are sighted, they lose the dimension/perspective that a non-sighted person also occupies a territory. It's as if your territory doesn't exist. So, they take possession of your body, take possession of your understanding, predict what you want. Often times this dimension of non-territoriality by normative non-visuality, I think is also a place that people occupy too much. It's as if since you don’t see in a normative way with your eyes, there, placed on sometimes, it’s as if you don’t perceive. I got this impression a lot. As I live with people, especially those who do not have contact with people who have some type of disability or even visual impairment. It's as if the person wants to anticipate you, your territoriality, you know? So, like pull up a chair, sit you down, push you cross [a street]. I think this is a bit the dimension that the normative sight removes from the perception of other senses and other modes of sight. This anticipation. In the past, photos had a negative, which was a register to later turn into an image when it was developed. So, it's as if the sighted person has a negative of your photo before you even think about which photo you are going to make. How do you anticipate that which you don’t already know? What, what attitude, what place will this body occupy? How can you already... predict that he is going to sit down? That he's going to get up, that he's going to knock, that he's going to I don't know what? How do you think this? I also think that this concept of anticipation is what those who see do upon those who don't. It brings a lot to me, this dimension of non-recognition of other sensory possibilities, I think.


Olívia: That touches me. Because there's the point that…. visuality, how does it function? This question of anticipation, right? Vision anticipates, but in this anticipation it doesn't allow you to perceive precisely the whole of the experience, right? You just filter through one channel, which is a channel of distance. I can see from a distance, right? So, before it touches me, before it affects me, I'm already predicting or projecting what's going to happen. Then how much do we end up not living experiences right? Because of this anticipation. It's something you're bringing, right? So how much do people who are able to see end up in a state of visual arrogance, right? Not allowing themselves, not only - of course, that also has an effect on the relationship, which is what you bring, right, that it is for you to project incapacity onto the other, which I think is also very serious, right - but also, it's also depriving yourself of living an experience from another place, right? Which is precisely to permit things to arrive. That you to experience through that of another, this other body, this sensory body that you also possess, right? That you can experience events through other channels, right? The channel of hearing, the channel of touch, the channel of being touched, you know, of allowing yourself to be affected too, a little bit of this dynamic, right, of our tactile corporeality that is not only in the hands, it is in the whole body, right. So, I think there is something very interesting here, in this place of the relationship. First, of course, the predominance of vision in our everyday relationships, which makes people who see, think of themselves as being in a place of hierarchically superiority, and this is a problem, that we really need to deal with in the relationship between vision and blindness; and also, this other question which is how much is lost from experiences when relying so much on a single channel, right, which is this visuality.


Gislana: Description for me, [self] audio-description, has the characteristic of attending many different audiences, and it has a dimension of… having differences depending on for who, the place, the environment, what you are wanting to… ah… people understand from your speech.  I always look to make this descriptive landscape of myself, because I am not one [thing], I am many, all people are many [things]. So, I think we keep providing this monologue of “I'm so-and-so, I do this, I say that”, I think it's a little reductionist for those who are listening and for those who are speaking. I think self-description is a very interesting informative place. I think it's the place of creativity, which is something I've been asking myself about, what is it about the subjectivity in what we do? Because I also think that audio description needs to more profoundly discuss the subjectivity of what it does. I think it is important to review this dimension of subjectivity: I describe and period! No. I describe and what happens?


Olivia: There exist other ways, right? Of creating access, that may not be through this channel of language. I think there is an element here which is also interesting for us to think about. How much do we utilize a sensory channel, which is hearing, which is what we have in common between people who see and blind people. So, we go through this channel which is a route that, in a way is easier, let’s say, it facilitates, for those who see. But how would it be to move away from this place of comfort, you know? To get away from a common sensory channel and even amplify modes of access. Opening up the possibilities of lived experiences, that people who see do not necessarily dominate.


Gislana: With words, right?


Olivia: With words, exactly. So, how does the description I make affect the audience I'm addressing, right? How does it affect these people? How does it arrive and how does it affect I myself? Because I think it's also this exercise, right? Of also hearing myself stemming from what I have described; of hearing other people without necessarily seeing.


Gislana: The Convention and the LBI [Brazilian Law of Inclusion], they talk a lot about this removal of disability as a matter of the person for a social issue, in the midst of barriers. But, at the same time, I think it also misconfigures a dimension that... I have a disability. The disability is also mine. It [the responsibility/onus] belongs to society to solve questions of possibilities for me to be able to live with differences in this world that…. Is so normative and equal. But I also have a disability, and the disability, is mine. It is from my position. It can't be denied by me, as if, the removal of barriers alone could solve this disability. This doesn’t solve it. Because also, there exists something in the corporeality of each person, which are the possible solutions for each one for their own coexistence within their environment. I think that we also need to think from this position. A social position is, for me, fundamental. Resolving barriers, solving and bringing up the issue of differences and diversity, from a place where you only perceive from one position, is fundamental. But it is also important that I understand the singularity of the disability of each individual person. Why am I saying this? Because these past days, I co-lived along side people who have other other disabilities that are not my disability. Other singularities, to resolve their own questions. And there are other elements that enter into the construction of their disabilities, which are not in mine, and which also has its own different elements. That which is an impediment of the very disability of each person, may not be an impediment for another person. You know? So, this is why this very dimension of the “portrait of disability”, of portraying disability through a perspective determined by a particular person, it is a snapshot of that place, that life, that culture, that dimension that that person has. But it does not represent the dimensions of everyone with a disability; women, blind people, low-vision people, who have a condition within this segment, but are not the only ones, and the issues are not the same. Because I also see a lot, people going from one specific normativity, the normative body, and entering another normativity, which is the disabled body where everything is the same. If blindness is the same, if low-vision is all the same, then you are going to treat these diversities within a single unit. I think this also has to be reviewed. You can’t take a normative reference from one place, then apply it in another place through another determined element. Non-vision, or non-seeing through a physical body, through the eyes for instance, understand? So, I notice this a lot, because even among us people with disabilities, this dimension of there being singularities in each person, sometimes we lose this [understanding]. We want people to react to determined situations in the way that I, who have a culture, who have a human dimension of different personal characteristics, would react. It doesn’t work like this. It’s not like this that…that we provide this dimension of removing normativity from one place, then applying a disabled normativity for a collectivity of people who have a disability, thinking, living, and facing issues in the same way. This is not interesting [good]. I think it is necessary that among ourselves, who have a disability, that we perceive ourselves from this place of diversity in differences. The singularity of each one of us. I think this is important.


Olívia: Technical information, co-creative duo Olívia von der Weid and Gislana Vale. Women portrayed: Nayara Santos and Sônia Marcha. Audio editing: Ana Lu Mendes.


[intro music]


Olga Aureliano: The script and recording is by Olivia von der Weid and Gislana Monte, co-creators of this episode. The finalization and intro music by Rodrigo Policarpo and the transcript is mine, with revision by Bruna Teixeira and translation by Deise Medina and Matthew Medeiros. Nádia Meinerz and Pamela Block are researchers of the [Disability] Portraits Defiças  Project, and Vanessa Malta works with me in the local production. That's it, folks. We have reached the end of this season marked by incredible disabled co-creations. Thank you so much for following our channel, and the updates of our website and our networks. All of us from the NGO Ateliê Ambrosina and the Western University of Canada, thank the co-creative duos for their participation. And on behalf of the entire team, we wish that 2022 will tell a new story for our country, a positive story, and full of opportunities for us, defiça [disabled], and for our Brazilian people. See you later!


[intro music]

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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