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Defiça Experience Radio



Title: Defiça Experience Radio

Release date: 12/27/2021

Co-created by: Ticiane Simões and Lays Barros

City/State: Maceió/AL



Ticiane: Hello.


[they speak at the same time]


Lays: Can I start too?


Ticiane: Let's go! Good afternoon, people! Let's start again what I said.


Lays: Excuse me? Can I speak? Do you want to start?


Ticiane: Yeah, I guess I thought I'd introduce the podcast first.


Lays: Okay. Aha.­­­


Ticiane: And then we'll introduc­e ourselves.




[intro music]


Olga Aureliano: In the first episode of Defiças [Disability] Portrait, we brought on Tiago Abreu and Bruno Filmann, who live in Porto Alegre, Rio Grande do Sul and they produced content with everything that is best: gay love, autism, and smart talk. Today we are going to talk about visual impairment, in a humorous and very sincere meeting between Ticiane Simões and Lays Barros. One of them has been blind for only one year. The other has never lived with a visually impaired person. They decide to walk together through the streets of the city Maceió, Alagoas, recording their honest relationship to their first encounter with disability in radio-experienced way. Let's go with them.


[intro music]


Ticiane: Good afternoon, people who are here listening to us. This is the podcast Experience Radio... No, it's not the Experience Radio podcast, it's just one episode.


Lays: It's the first episode.


Ticiane: Yeah.




[throughout the episode in the background, sounds of street ambience, sound playing in the background, peddler talking loudly]


Ticiane: Hi Lays.


Lays: Hi Tici, how are you? [laughs]


Ticiane: We’re recording already. [laughs]


Lays: At last we meet.


Ticiane: Right? It took a while, but it's being done! Alright!, let's do the experience I am so eager!


Lays: Imagine me!? [laughs]


Ticiane: Let's go! Hello, folks, who are listening to us. This episode which is entitled Defiça [Disability] Experience Radio is presented by me, Ticiane Simões dos Santos, actress, art educator, I am a black woman with black eyes, black hair, Afro-indigenous, I have curly hair down to my shoulders, I am 1.63 meters tall; and next to me here, in this partnership, is Lays Barros. Introduce yourself Lays!


Lays: Hi everybody, how are you? I'm Lays Barros, I'm 33 years old, I’m white, with long brown hair, brown eyes, 1 meter 58. I'm a massage therapist, I've been living with visual impairment for a little over a year, I'm considered monocular of the right vision (eye), low vision; and totally blind of the left vision (eye).


Ticiane: And now, I invite you to dive a little into what was our experience in this episode, which aims to capture the experience of a non-defiça [non-disabled] person, which is me, in a first meeting as a guide. - I wanted to propose a route like this to us. As we had decided to go to the waterfront from here, we should go by train.


Lays: Gee! [laughs] Cool…


Ticiane: Have you ever been on a train?


Lays: Not like this, but I have been.


Ticiane: You've been before.


Lays: Before, exactly.


Ticiane: I would like us to cross here, from Downtown to the station, right? We would talk and chat together here about this route and about the other things that cross us. Then we go by train to the final station, which is there in Jaraguá...


Lays: Uhum.


Ticiane: And from Jaraguá, we take an Uber to somewhere on the shore that we want to do the recording at. Is that okay?


Lays: That's fine, we can go to Pajuçara, right? Ponta Verde.


Ticiane: Yeah, I think that would be the best place.


Lays: Humhum.


Ticiane: Let’s go?


Lays: Lets! You've never had contact, right? So, to...


Ticiane: Never.


Lays: Right, we can start with that, right?


Ticiane: Yes.


Lays: So, one of the difficulties that many people have is how to reach out, right? To the person who lives with the disability, like so as not to “have too many fingers” (i.e. so as not to be too overbearing), right? And so on, so that we don't make the person feel uncomfortable, ahhh treat the person normally. Just not pulling them by the arm is great, right? There are people who come and approach us, pull us by the arm, grab our shoulder out of nowhere, you know? It scares you a little bit this, but other than that it's ok. You do it as you usually do, like when you walk with your nephew or with your wife.


Ticiane: I would also like to know about this, this noise, right? Because here it's a, like... The importance of hearing, so how hearing became something much more sensitive, with its necessity as a source of guiding you, right?


Lays: Yes, yes. Besides the cane, right? We identify through sounds, and here, what you’re picking up on… It really is noisy. It’s the noise of the loudspeakers, the sound of people, so it really does get in the way.


Ticiane: Yes. Let's go, then? Let's conduct our podcast, our experience together.


[street noise, sound in the background, wind, people talking very quietly, sound of the cane dragging on the floor]


Ticiane: Hey Lays, it's... how much, how much vision do you have?

Lays: So, I'm monocular, total blind in the left eye, and low vision in the right eye. I have a little more than 5% in the right eye. And since my case was internal, right? They say that there is no surgery for this, it was a brain tumor that affected the optic nerves (music in the background), it is still in the study phase, you know? With stem cells and such. If I'm not mistaken it is Thailand, the place that is being studied.

Ticiane: I know.

Lays: But I'm here to be a guinea pig too, if need be. [laughs]

Ticiane: And this was how many years a go?


Lays: It’s been 1 year and 7 months.


Ticiane: It was recent .

Lays: It was, it was.. Everything we lose.. is already painful, right? And vision which is a sense, like 100%, right? In human beings, everything is visual, right? Especially nowadays, this question of social media networks, of everything, you know? around us. It was painful, it was a continuous process. I woke up, and out of nowhere my left vision was already gone, so it was like a scare, right? Let's say a scare, but everything is a matter of adaptation and re-signifying, right? I usually say that the world is totally the same as it was, the only thing that changed was that I am seeing less and this helped me a lot right at the beginning, to lose the fear, you know? To walk, to this whole process of change, because the world is the same, only what changes... [interruption] you saw, right?

Ticiane: Yeah. [laughs]

Lays: We were passing by and...

Ticiane: You didn't hit her, did you?

Lays: No.

Ticiane: She hit you!

Lays: Yes. She almost kicked you, right? The cane.

Ticiane: Exactly.

[merchant man's voice in the background, doing voiceover; sound of urban commercial ambience]

Ticiane: No, we're going to go on, but the ground changes here. It's broken, it's pebbled.



Ticiane: Okay, now it's back.


Lays: That's what people...

Ticiane: Reacting? What people?


Lays: Around, no matter how much we have the cane, but people are always distracted, right? So, you kick the cane or bump into them. In the beginning it used to happen a lot that people would bump into my shoulders, especially in supermarkets, and there is not such a big flow of people, you know?

[urban ambiance, man shouts in the background: "cold water", ambiance continues].

Ticiane: Yeah, well. What I have observed from the people around... It's the first time I've ever stopped to observe how people react. They look. I think also due to the fact that I’m recording, right? It’s drawing a lot of attention. People really observe, what we are doing, right? They look. I think that the cane is something that calls strongly to people, but until now, I haven’t observed anything… pejorative. I think it’s coming more from a place of strangeness maybe, you know? I think that if we had more people, more different bodies occupying this space, maybe it would be more natural, right?

Lays: Yes. Yes, I usually think the following, it's not the people who have disabilities. It is the place that puts disability, you know? Because if that place is there, super accessible to serve a wheelchair user, a person with visual impairment, anyway, so the problem isn’t the people who live with disability, it’s the locale, that who knows, is full of holes, with a pole in the middle of the road. Here, for example, I don't feel any tactile paving. There isn't, right?

Ticiane: No, here there is none.

Lays: There is none. So, that makes it difficult, right? Although many of them, tactile paving, end up leading to a pole, leading to a wall, but anyway, it would already help, right?

Ticiane: Yea. No, here I don’t see any, not on this side that we are going towards. We're going on the left side of the sidewalk in this business area, but on the other side we don't have it either.

Lays: When people see the cane, they already...

Ticiane: Yeah, the cane...

Lays: [...] they already move away a little bit, right?

Ticiane: Yeah. In reality, they come, right? As if they were going to cross paths with us. When they see the cane, they kind of jump, they get scared, they have different reactions, depending on how distracted or not the person was. [wind noise] Oh, it just happened, the guy had to lift his foot, but he was on his cell phone.

Lays: He even bumped into my shoulder.

Ticiane: He still bumped into you, right?

Lays: Yes. It's like that distraction thing, isn't it? It seems that everyone is not paying attention, they are on their cell phones.

Ticiane: Here there’s a traffic light. What do you do to you cross?

Lays: Here, you just go with the flow, because usually there are people to your side, right? As I have my low vision, sometimes I can, depending on the time of day, I can perceive when people are crossing.

Ticiane: I understand.

Lays: but, the interesting thing, I don't know if you've seen, those beeping traffic lights.

Ticiane: Yes, yes.

Lays: Very important those ones.

Ticiane: It blinks, right? Like a [imitates sound] pi, pi, piii.


Lays: In front of the mall, Maceió Shopping they have one. This is interesting, because… it causes the perception that the signal has closed.


Ticiane: The sidewalk, you'll have it now. Yes, now there’s a wall. Yes, now we are going to pass through the outdoor black-market stalls here at [...] Palmares Square.




Ticiane: Thank you.


Man: You're welcome. No worries.


Ticiane: He was sitting on the ground with his legs like this in the middle of the road.


Lays: Then he got up, didn't he?

Ticiane: He got up, jumped up [laughs].

Lays: There are people who are very polite, who we meet. You meet all kinds of people, right? But more those who help.

Ticiane: Yes.

Lays: There are some... [unfinished sentence]

Ticiane: Ooo, thanks.

Lays: [...] there are some people who infantilize too.

Ticiane: It’s as if you don't even have autonomy of choice, right?

Lays: Hum-hum, and it becomes very infantilizing, like laying out food for you, you know? If it were up to my mother I would be inside her house like this.

Ticiane: [laughs]

Lays: But then, it's just a process of adaptation for her too, right?

Ticiane: Yes. There is a little hill here.

[urban ambience, commerce, random music, sound of the cane on the floor]

Ticiane: Back to the wall now. There.


Lays: I think this is the second time I've walked here Downtown [interrupted].

Ticiane: The chair.

Lays: Out of nowhere a chair.

Ticiane: Yeah.

Lays: In the middle of the sidewalk.

Ticiane: As if it weren’t enough to have the sidewalk full of holes.

Lays: The sidewalk is all bumpy. Yeah.


Ticiane: How long did it take you, Lays, to feel confident, like this...

Lays: To walk?

Ticiane: Of walking, like, of your independence?


Lays: Yeah, I still feel afraid, you know? I think it became a notorious [laughs], but it was much more. I started inside the condominium to take the cane, to walk by myself, but I felt much more confident with Ciro Accioly's classes, with professor Delberto, of orientation and mobility.

Ticiane: Look, we are going down a step now.

Lays: This gave me more confidence, because it is very challenging, you know? They really challenge us to go out safely. And to do the activities, right? In the orientation and mobility course. It was only from then on that I started to lose my fear.

[ambience, sound of cane on the floor].

Lays: It is a challenge.

Ticiane: It's closed. Do you want to go alone or hand on shoulder? Nothing.

[wind noise, ambience]

Ticiane: The sidewalk. There's a little step before. There. It's bumpy there, but it's going up a little bit. And that's the wall, here on the left. Okay, the ground is very cobblestone... Yes, but there are no big steps or [...]

Lays: No obstacles, right?

Ticiane: No, no obstacles. It's just irregular.

Lays: Those places like that, it's more complicated, because it hooks the tip.

Ticiane: Yes. I've seen some that have a little wheel. Does it help, what is it for, is it a choice?

Lays: I haven't experienced it yet, but my teacher taught us that those wheels are usually for places where you don't notice the sound of the cane. The wheels, it glides without so much sound and they are for places like hospitals, theaters.


Ticiane: I see.

Lays: But I know people who prefer the wheels.

[ambience, sound of cane, man calling for the van]

Ticiane: More this way. Now a step here.

[ambience, sound of cane, man calling for the van]

Lays: We're already close to the station, right?

Ticiane: Yes, very close, already. We're almost on top of the train tracks. We're crossing that last one train... [unfinished sentence].

Lays: I noticed the sound of the train, but as we were walking down the Palmares Square, we crossed that sign there, I realized it was the station.

[people talking in the background]

Lays: The sound of the train, as we hear it from far away, right? You can already perceive it too.

Ticiane: Yes.

Lays: To locate. We already know where we are.

Ticiane: I hope it won't be long. Let's go? [noise of the cane; wind] now you are already over the line, over the rail. The first one passed. The second one. Now come here, to your right, so we can cross the main road now. Just a minute. Go ahead.

[sound of cane dragging on the ground, urban ambience, wind]

Ticiane: Here the ground is already marked, here where you are on top of, see?

Lays: Hum-hum


Lays: The tactile paving?

Ticiane: Yeah, here is the little ball and this one here...

Lays: The little ball shows that there is an obstacle.

Ticiane: Is it? And here is the little square. The little ball, has the boy. We're going to make a right here to go in. [ambience] Okay, and now all the signalization is on the floor, does it really help you? Over Here, to the right. There.

Lays: Here, right?

Ticiane: Yeah.

Lays: Following the tracks, right? This here is very important, but many, many people who live with disability don't even look for it sometimes, you know? This here. And sometimes an accident happens there are now signs [....]

Ticiane: This way.

Lays: [...], and ‘ah but wasn’t it written that there was tactile paving, and the person didn't even feel it, They didn't even look for it.

Ticiane: The hose.

[wind noise]

Ticiane: But don't you think it's also a place of non-formal learning, the person grew up and needed to adapt?

Lays: Yes.

Ticiane: So they end up not getting used to it, it ends up coming later.

Lays: Hum-hum.

Ticiane: Like something more, right?

Lays: Exactly. There is the perception that this will, in a way, will help you, right? Until then you didn't really have it, like I am learning everything anew as I am learning everything again, right?

Ticiane: We are already inside the station, I will try to find out the time of the next one, then we can sit down and talk a little more, I think now without all this tension [both laugh]. Lays here, there is something here.

[ambience, sound of cane]


Ticiane: Hello, how do I know when is the next train to Jaraguá?


Man 2: To Jaraguá? 4:45.


Ticiane: What time is it now?


Man 2: Oh no, sorry, 4:30, it’s 3:45 now.


Titian: 3:45, 4:30. And it returns at what time?


Man 2: To Jaraguá, right?


Ticiane: Yes.


Man 2: What time does it get there?


Ticiane: What time does it return?


Man 2: What time does it return? [people talking] 5:15.


Titian: 5:15. No I’m just going and returning and just wanted to know. [woman speaking] It leaves there at 5:15, right?


Man 2: Correct.


Ticiane: Ah thank you! Well, Lays, from what we can see now, given the time of the train, I think it would be better if we call an Uber from from here to the waterfront, then from there we do this part of the experience, then we call a new Uber from where we are, and it will drop us off at the station. And instead of us making this trip going, we make this trip by train coming back, what do you think?


Lays: Great.


Ticiane: Great, so, I'll call the Uber, and while we wait we can chat, making use of this quieter space, more calm, less tense. Regarding public transportation, have you ever traveled using the bus?


Lays: It was normal, I was a bit scared the first time, I was accompanied then also. Stay at the front of the bus, and… normally I ask the driver that he advises me when we are near the stop so I can get off, and he always tells me so that I can get off. No one has ever complained about this, since I always have the cane right? And I sit in those chairs... What do you call them? That seat...


Ticiane: Preferential.


Lays: That’s it, preferential [preferential seating for the elderly, pregnant women, and disabled people], there’s never been a situation where someone has ignored me and stuff. Also due to the cane too I guess.


Ticiane: You don't have a demarcation of a blind person, do you? The whitened eye... Does that make it difficult for people to see you as a blind person?


Lays: Yes, yes, of course, it is already complicated, isn't it? For people, even with the whitened eyes, there are people who don't look into their eyes.


Ticiane: Lays, how do you go about choosing clothing, or choosing something in the city center, besides this chaotic noise, how do you go about buying something, to be a consumer in this space?

Lays: Yeah, it's complicated, isn't it? As we saw, but.. I still use my residual vision, although it’s just a little, a bit more than 5%, but I focus more on like, the texture of the clothes, you know? Corduroy-textured fabric, you know? That fabric that I like…now the colors are a bit more complicated for me.  I only identify warmer colors, like red, black, white too; but I still use my residual vision and sense of touch, right? To choose, in the choice of clothing.


Ticiane: Do salespeople help you? How do you do it? Besides being accompanied, right? You said you always go out with someone.


Lays: They always do, especially when buying clothes, but the salespeople do, they always help me. One time when I went out on my own I went to the mall, and I got there and was choosing a pair of shoes for my nephew, a pair of running shoes, and after everything, the saleswoman who was helping me chose, she say’s "- Lays, please, sit here for a moment”. So, I said "okay, I wonder if she wants to sell me something?” [laughs] So I sat there on one of those stools that they have, and then she said: "let me switch your shoes, they are switched around.”. [laughs]


Ticiane: You wore them on the wrong feet?


Lays: On the wrong foot! Yup! Then I said: "oh my God, what a mess! And she said: "no, it has already happened to me, seeing, imagine! [laughs]


Ticiane: Nice.


Lays: But it happens, right? Nobody is really free from the rush.

 [Change of scene/environment noise]


Ticiane: The car is already stopped there, waiting for us.


Lays: On the other side?


Ticiane: No, it's on this side. More to the right here, Lays. Okay, there you go, it's already in the lane. This here, on my right.


[street noise, wind, sound coming into the car]


Lays: Good afternoon!


Man 3: Good afternoon!


Ticiane: Hello good afternoon. [GPS noise] What's your name? 


Man 3: Aislan.


Ticiane: Aislan. How old are you, Aislan?


Man 3: I'm 22.


Ticiane: 22. Aislan, have you ever transported a person with a disability in your car?


Man 3: First time.


Ticiane: First time?


[GPS noise]


Man 3: I haven't been doing this for long, it's only been around nine months.


Ticiane: Ah. We are recording a podcast about... A podcast episode about accessibility, the city, and people with disabilities and some of the issues that cross our lives in this place. We are recording it right now, can I use your voice in the podcast?


Man 3: If it turns out good, yes. [laughs]


[loud wind noise]


Lays: Were you nervous? You didn't sound like it. [laughs]


Lays: As natural, as daylight.


Ticiane: Isn't it? It was calm, it was a great chat, very good, thank you. Thanks to you too, good job.


Man 3: If you can evaluate?


Ticiane: Yes, I will! [end of Uber-ride]


Lays: No crosswalk right? From what we've been through.


Titian: No. [laughs] and I'm looking here, I don't think there's any over there either.


Lays: There isn't? Shall we risk it? Do you want to take a chance?


Ticiane: There's one here, there's a pedestrian crossing here, but it's not... It is a crosswalk, but it only has that signal that flashes all the time, you know?


Lays: I know. Let's test it, we'll even take the opportunity to see the education of the people from Maceio.


Ticiane: Just like downtown, right? [laughs] even with the signal open.


Lays: Let's see.


Ticiane: Look, it's already stopped here. It's already stopped.


[ambience, sound of car brakes, sound of cane dragging on the ground]


Ticiane: Super easy, just hold the cane out. [laughs]


Lays: It was! I thought it was easy. I thought that... There are many places where it takes longer.


Ticiane: We arrived. There's a tree here, over there [noise of motorcycle passing]. There. It was.


[ambience, wind]


Ticiane: Do you want to go to my right side to gain a sense of where you are in reference to the wall?


[ambience, wind]


Ticiane: I think I'm less tense now. [laughs] I was more tense, I think downtown, I was more tense. There were a lot of things in the middle of our path, a lot of people all the time crossing and, finally, a lot of [interrupted phrase]. Lays: Good afternoon!


Lays: Good afternoon.


Woman 1: [unintelligible]


Ticiane and Lays: Thank you.


Lays: You think for me, right? To walk there and me too [inaudible phrase].


Ticiane: yeah.




Ticiane: They stopped for us, let's go. Thank you! [ambience] Look at the post on top. There, you can climb up there. That's it.


Ticiane: How is Lays, the mother? I just found out a few days ago! [laughs]


Lays: [laughs] Really?


Ticiane: Yes, I was looking for you on Instagram, which I hadn't looked at yet, then I started to look and I saw you with him.

Lays: He’s 13 years old, Gabriel.

Ticiane: Gabriel.

Lays: And I am Liz's mother too, my little dog.

Ticiane: So then, how is this routine?

Lays: Well, he lives more with my mother, because as my mother lives in the interior and lives alone, he is her company, you know? But we are always stay together on weekends, when there are events at school too. I try to be very present in his life, you know? And that's it, he is my little cutie.

Ticiane: How was this moment...

Lays: Of change, right?

Ticiane: [...] of change, of adaptation, anyway. Even though he lives far away, he must have felt this sense of...

Lays: Yes, yes. Just to start, in the moment of my surgery they told him, right? That I would be going through surgery, it was a nine hour surgery, so, they thought it was better, right? To make it very clear, right? What was going to happen and so on. He went to Youtube to research how to perform a brain surgery.

Ticiane: Wow! [laughs]

Lays: He is this kind of guy, you know? He is super curious, he says he wants to be a surgeon, so for him that [...].

Ticiane: Look, we gained accessibility.

Lays: Yes. Good thing here, tactile paving. After walking how many meters?

Ticiane: We walked a lot to find it, and it's a little piece of a sidewalk, just at the door of the hotel.

Lays: Hum-hum.

Ticiane: We're going back to the real world.

Lays: Already over here, it’s all over.

Ticiane: Yeah.



Lays: And, the question of adaptation. I don't know, [high-pitched wind] not only because he is a pre-teen, but also, I see him very open-minded, you know?  He helps me a lot with apps, he is a little hacker, you know? He likes to mess around with technology, and he is always helping me with accessibility, in relation to apps, helping me with this adaptation.

Ticiane: That's great, Lays, and how did it turn out... A little further over here, there are some plants here that can hurt you. How ended up going … your.. Lays the professional? What did you work with before? How was this adaptation?

Lays: So, before I worked in commerce, I was a sales promoter, when it happened, right? The visual loss, yeah... Given that it was a long process of adaptation and visual loss and surgery, I had to leave my job, and I won’t have it again, right? Until then, I'm on benefit. It was then, at the beginning of the year, that... I started to take a course in massage therapy, I always wanted to, actually. I used to get people like that, you know? Already...

Ticiane: Liking to massage

Lays: [...] yeah, massaging, the hand, the shoulder... I say, "ah, why not, right? Let's go! And that is where I rediscovered myself with massage therapy [strong wind] I always say that it is...

Ticiane: Hold on, just a minute. Now here, there is water underneath.

Lays: Wow.

Ticiane: I went too.

Ticiane: [laughs]

Lays: Gee [laughs]. You went when I did.

Ticiane: Also! I wet my feet, but I'm wearing Havaiana [flip-flops] too.

[ambience, sound of cane hitting the floor].

Lays: That's part of it.

Ticiane: Yeah. It went up. Over here, to the left. There's a young man sitting here, hello.

Lays: Good afternoon!

[wind noise]

Lays: So, the massage therapy, it's... It helped me a lot. It was in the beginning, right? I needed to get out, mobilize myself to the course to do it, right?

Ticiane: It was a stimulus too, right?

Lays: Yes, for sure. To get out of the house, right? Because, due to the visual loss, we hold back a lot, we stay in our own little world, locked up in the house and that stimulated me to go out, to seek new things, a new profession and I really found myself again. It's wonderful to work with what you love.

Ticiane: And today you are already working with this?

Lays: Yes.

Ticiane: There's a guy here on the floor, a little bit more. To the left, there are now some tables here. A little bit more. There, now you can turn forward, that's it, now.

Lays: It's a bar isn't it?

Ticiane: It's a bar, and they are using their tables on the sidewalk.

Lays: On the sidewalk.

[urban ambience].

Lays: I think the biggest difficulties here on the waterfront are these things like this, bar, pick up and use.

[urban ambience]

Lays: But in relation to the sidewalks, it can't be compared, right? Especially that part of the... [unfinished sentence]

Ticiane: Yeah. This way. That's it. [sound of cane; wind] but the ground is pretty good here too. [dog barking] there's going to be a little grass now.

Lays: Like you were saying, right? Even the most precarious sidewalk can't compare, right?

Ticiane: Yes. Okay, here it all is... You had commented earlier about the time you prefer to leave the house, this time when the sun is stronger, you can get a better definition, right?


Lays: Hum-hum, yes. This time, after 4:40, five in the afternoon, it is more complicated, because there is the sunset, right? And then it gets much less illuminated. It's just like that, contrast, that I can identify.


Ticiane: Yes [...] Sit here on the stool, here, you can sit down. [sighs] I think the summary from here on the waterfront was wet feet [laughs]. The cars that stop, it's the first sign of a want to cross or whatever, this was very striking, and here there was something that downtown, ah... It grabbed my attention… which is that it was a place where everybody was staring

Lays: Here is it more?

Ticiane: No... Here nobody stared.

Lays: How come!

Ticiane: Yes. Here, it was only when we were crossing or when it seemed that you were going somewhere that you were going to hit, that's when we drew attention, but that was also a situation that drew attention, but coming from a place of them wanting to warn you, you know?

Lays: Yes, I know, of wanting to help really, right?

Ticiane: Exactly. We passed by the doors of some restaurants and there were always vendors there right? Attendants at the doors. They became a bit tense when we got close, but completely different from the exotic place that we appeared to occupy when we were walking through downtown, you know?

Lays: Hum-hum, interesting.

Ticiane: It's as if it were more strange to have you Downtown, than to have you at the waterfront, you know?

Lays: I understand, I understand. Because sometimes it's, "- my god, right? The person in this mess?

Ticiane: It is... it is as if [...]

Lays: In this mess.

Ticiane: [...] I think it is also a question of, maybe of...

Lays: Cultural?

Ticiane: [...] of habit too, maybe here blind people are able to walk more here, than downtown.

Lays: They walk more.

Ticiane: Yeah, hum-hum.


[ambience, car sound, opening and closing the door – Getting into Uber]

Ticiane: Good afternoon.

Man 4: Is it near here?

Ticiane: Yes, at the train station.

[sound of Uber's cell phone notification, car noise, gears, wind)

Man 4: [unintelligible]

Ticiane: Like this it’s good. What is your name, sir?

Man 4: Guilherme, José Guilherme.

Ticiane: Jose Guilherme, how old are you Jose Guilherme?

Man 4: 21.

Ticiane: 21, how long have you been Uber?

Man 4: [unintelligible – possibly says 9 months].

Ticiane: Have you ever picked up a person with a disability?

Man 4: I have. I one time picked up a woman, jeez, this little disabled person [using diminutive “inha” in word for disabled], a visual one, and the little poor one went to get in the back seat the other way around. It generated a huge mess!


[Ringing bell noise as a warning sign inserted in editing, out of ambiance]

Lays: Ops, wait, José Guilherme, no, not little poor disabled. We're not little poor people, that's a pejorative way of classifying us, okay?

[return from ambience]


Ticiane: Oh, yeah? [laughter]

Man 4: Instead of her entering with her foot on the right side, she wanted to enter on her back.

Ticiane: Ah I know.

Man 4: And I came down and, no ma'am, it's not like that no and she said, "- but it's like that!"



Man 4: Then she said, "no, but I'm right, you want to put me in the wrong"; then I say, "no ma'am" [laughs at the same time] and she said, "no Sir, I'm getting nervous". Then I said, "There's no use getting nervous, you're wrong". Then she took it very calmly, held it, held the door, and she went in. When she went in, she was laughing at herself.

Lays: She didn't understand.

Man 4: She thought the car was upside down. I say, "lady, the car is facing that way"; and she said, "which way? I don't know which side?

Ticiane: [laughs] Is this the case you remember as the funniest?

Man 4: That was the last one, it was very funny. I beat her with a thing called vision.

Ticiane: There, in the Lighthouse?

Man 4: At the Santa Luzia Eye Institute, the one in the Cave. Then she was laughing at herself. It's here, isn't it?

Ticiane: Yes, but I think it's at the other entrance.

Man 4: Okay. It's right here, where the turnstile is.

Ticiane: Right here.

Man #4: Are you guys from right here, from Maceió?

Ticiane: Yes, yes we are.

Man: You're taking the train?

Ticiane: Yes.

Man #4: For a little ride.

Ticiane: Yes. Ticiane: Thank you.

Man 4: Thank you guys.

[urban ambience, wind, car door closes, sound of cane]

Ticiane: Steps here to climb and the train is already there.

Lays: really?

Ticiane: Look, the tip.


Lays: Wow, the tip.

Ticiane: There, now it's done! Do you prefer the ramp or the stairs?

Lays: The ramp.

Ticiane: [laughs] It’s over here.


Ticiane: Here, here it is. Now to the right, climb up.

[ambiance, sound of the cane dragging on the ground, wind]

Ticiane: The train is empty, empty empty.

Lays: Really?

Ticiane: Uh huh... I think we'll just have...

Lays: The conductor? No?

[both giggling and talking at the same time].

Lays: Oh my god, it's one of the pearls.

Ticiane: Hello, good afternoon! I’ll take two. To Downtown.  

[urban station ambiance]

Ticiane: How do you do it? It's up here, isn't it? Here?

[ambience – Change of setting sound]

Ticiane: Is it here? Here? I put mine, let it pass now, then I'll show it for you now.

Lays: Yep.

Ticiane: Here Lays, come here. There is one here, here, then put it inside, the other side sideways here [laughs] there!

Ticiane and Lays: Thank you


Ticiane: Here it is signposted on the ground. This side, this side, this side. Yeah, here, now this way, straight. Here, that's it, it fits. This one here goes all the way until the end [ambience] there it goes, here is a door of the train already, of the LRV. Let's go in and wait inside.

Lays: Yep.

Ticiane: There's a hole here, that's it, from there to here, and it's gone. Wow, we're the only ones here [laughs] not in the back, way, way in the back there are some people.

Lays: Let's go there.

Ticiane: Come on? Let's go to the back?

[train ambience].

Lays: Those chairs are blue, right?

Ticiane: What?

Lays: Blue, those chairs?

Ticiane: Yes, and there are some green ones which are the preferential ones. Let's sit down?

Lays: Let's.

Ticiane: Sit over here by the... There's a lady here, this way.

Ticiane: Hello, good afternoon. What is your name?

Woman 1: Good afternoon, Isabel.

Ticiane: Isabel [loud sound of ambience] it seems that everyone who goes up here comes to the back, doesn't it?

Woman 1: That's because when it stops at the terminal, when it leaves, it's closer.

Ticiane and Lays: Oh, I see. Yeah, he already knows where to get off.

Ticiane: It goes until where?

Woman 1: It goes to Bom Parto. It terminates now in Bom Parto.

Ticiane: Really? It does’t go through Bebedouro?

Woman 1: Not anymore. It only goes as far as Bom Parto.

Ticiane: Because of Pinheiro's case, right?

[bell ringing, suggesting editing alert; end of ambience]

Ticiane: Wait, Ticiane, wait a minute, not Pinheiro's case. The case of Braskem's criminal extraction of salt that is sinking 5 neighborhoods in the city of Maceió.

[return to the ambience of the moving train, train horns]

Ticiane: It's arriving. Let's go? More to the front, yeah. More towards the front.

[ambience of the train in motion]

Ticiane: To the left, Lays.

Lays: What?

Ticiane: To the left. This way.

[Change in audio – ambience noise change]


Ticiane: I would like to understand, how is this space of mobility for people with disabilities, how do you all deal with it? If there is something thought about it, we saw that here there is this horizontal accessibility, right? On the floor, but, for example, inside the train there is no warning about which station you are arriving at or anything like that, right? That could make it easier for the blind person?

Man 6: Yes, the LRVs, they used to have warnings, right? At each station, at each stop, but over time physical problems happened inside the LRV, and then it we started losing it, right? This issue of sound warnings. In the stations here, at least in the central station, we see that we still have...

Lays: The tactile paving?

Man 6: Yes, the tactile paving, but I believe it's not perfect, right? It's not in the state that it should be… because, for example, over here you don't have it anymore.

Lays: It ends, right?

Man 6: Yes, it terminates, it ends, and it shouldn’t right? That is, this project was not well executed, so we still have many limitations, right? And when we realize that there is some person who is going through problems, to understand the logic, right? Or has some visual impairment, we try to help, you know?


[bells ringing, suggesting editing alert; end of ambience].

Lays: Oops, help is always good and we need it, but autonomy is essential.


[return from ambience]

Ticiane: Anyway, let me see here, is there anything you would like to say to complete?  A part of your story? Some situation? You know, like anything that you would like to be in this podcast?


Lays: Boy, there's a lot of things, but it's more just funny situations, you know? Like the one about shoes, you know? I one time even grabbed my grandmother's breasts [both laugh]. I went to hug her, she grabbed one arm here, and the other, you know? [laughs] And then I grabbed her breasts [laughs] and I started swinging them, and jeez I died when I realized. Just some funny things like this.

Ticiane: And in case of a bender?

Lays: So, the first party I went to after the visual loss was a concert, in a concert house that we have here, it was... in January of this year with Mara Pavanelly. There we were at the table, right? We couldn't get up because of the pandemic and all, and I was very well seated at the table, when the show was about to end, then the girls said: "- Lays why do you look so much over there? And I said: "Why? It’s the stage, isn't it the stage? Then, "No! The stage is on the other side, you are looking at the bathroom! [Both laugh].

Ticiane: You were asking for an encore for the bathroom! [Both laugh].

Lays: Right? I said, "- really? Why didn't you tell me?  I spent the whole night looking, thinking I was looking at Mara Pavanelly [both laugh] but it doesn't matter, I had fun either way, it was very good. It was unforgettable.

Ticiane: Oh, very good…

Lays: The main thing is that people should put themselves in the other person's place. To think that, right? The world out there that we need to be in, needs to have accessibility for everyone, it needs to be welcoming, right? As I said, the place itself is what is disabled. Disabled in receiving a wheelchair user, like those sidewalks that we walked on there. For me it was already difficult, imagine for a wheelchair user? Impossible to get by there. So that's it, it's consciousness, empathy, you know, mainly.

Ticiane: I would like to know, to finish, if you would like to use this space now to thank anyone, if you want to send a kiss to Gabriel... [laughs] or something like that, just so we can finish this experience of ours with a golden key.

Lays: I just want to take the opportunity of this podcast, of this episode, to thank all the people who have been with me since the beginning of my process. First of all, honor to God, my father, my mother, they are my parents who made it possible for me to be here today. My sister, my son, my nephew Iago, Joyce, my companion. I am grateful for all the patience and for everything. I also want to thank my experience partner, Ticiane, thank you, thank you. You were the best, you were 10, thank you very much too. And to everyone who is part of Portraits.


Ticiane: Thank you Lays, thank you for your dedication, thank you for your will, at last, there were many, many things that made it possible for us to be together, so I leave, I leave this experience a much more attentive person. There was a word you said about the place of empathy, I came out a more empathetic person from our experience, from our afternoon, from our interaction. I also wanted to say thank you so much for being able to have experienced this, to the portraits project, I think it's an amazing and necessary project.




Ticiane: Hello, everybody who listens to us, good afternoon. No, I don't think I will say good afternoon, good evening, or good morning, because people can listen whenever they want, right?




Ticiane: I think that's it.


Lays: Yeah.


Ticiane: Opening, right? I invite you to dive into the nãnãnãnãnã. Let me see if I could say something else... No, I think that's good.


Lays: Yes, it was great.


Ticiane: Okay, then I'll edit that part. It’s over.




[intro music]


Olga Aureliano: This channel is produced by the NGO Ateliê Ambrosina from Maceió-Alagoas, and captained by the Western University of Canada, with me, Olga Aureliano in mediation and local production, together with 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 Ticiane Simões and Lays Barros, co-creators of this episode; the finalization and intro music is by Rodrigo Policarpo, and the transcription is mine, with proofreading by Bruna Teixeira and English translation by Deise Monica & Matthew Medeiros. See you next Monday!

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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